The biggest trouble with all this is there is not a great deal the caregiver can do about it, which really makes one feel disempowered. All the advice, verbal and written, from the professionals seems to be that one should at all times humour the patient - at all times be sweet and soothing and nice. Well, I have news for all these people...
I appreciate the importance of this approach in institutions that are being paid for providing a service. I also appreciate its importance in dealing with rude, strong and violent patients, of which I believe Alzheimers has its share. The caregiver should not put themselves in physical danger. Luckily, I don't have a problem in that respect - and I am grateful for it - but no way am I going to be walked all over by someone who has my life in bondage, and come up smiling and sweet no matter what. Sorry!
In many ways my mom is back in her childhood and like a child, she will play a situation for all it is worth. Like any parent, I will only take so much - more on this later - and I find I can tell and tell her, and get no change of behaviour - which might make you think she lacks understanding. BUT if I take out my father's Sergeant-Major voice - though I'm a female I have a fair measure of it - and really let her have it (no swearing - my dad never, ever swore) THEN I can achieve a measure of compliance - even if only for half an hour or so while my vocal chords cool down. This is not something I ever do in town of course - it would never do to be seen shouting at a little old lady.
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Saturday, September 02, 2006
Monday, August 28, 2006
Another Cup of Tea ?
Writing my earlier post about the cup of tea and the toilet roll reminded me of something else that happened about a week ago. It had been a hard couple of days in which I was very conscious of the "ball and chain" effect. This probably sounds unsympathetic: I do in fact realise that this situation is very hard for my mom too, though I know her lack of moment-to-moment awareness of what she is doing probably protects her in some ways from knowing the real situation she is in.
Anyway, we had had a couple of days of unrelenting attention-seeking - even more than usual. It is fairly normal that from waking until finally falling asleep my mom almost continually seeks my presence and attention. This is pretty much the norm. Except for essentials when I leave her to take a shower or a comfort stop, or to wash dishes or cook a meal, she has my presence. However I firmly refuse to sit talking to her all day - which I know would keep her happy - mainly because I need to preserve my own sanity and pursue my living on the internet.
It was the evening of the second of these days. We had had our meal and she was propped up in bed because the evenings are cold right now. I was working on the computer when suddely I heard the tinkle-tinkle of falling liquid. I looked round to see something I had never seen before. My mom was sitting with her mug in hand held at elbow height upside-down over the edge of the bed, and the whole contents of the mug - more green china tea, no less - lay on the floor and on her bedside table.
She actually looked quite funny sitting there like that and I have no idea if she realised what she was doing or not, but I suspect she did. I was in a live chatroom at the time and one of my friends commented , "Well, she sure managed to get your attention!" Come to think of it, we had music playing in the room (a rare occurrence) and that may have made her feel my attention was diverted from her.
I can't believe it was just the sound of the music, because I have known her rave on really loudly at times and when I tell her she has been calling out she says she wasn't aware of it. You can't help wondering where the truth of it all is............ I will draw a veil of silence over the following clean-up operations.
- - -
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Anyway, we had had a couple of days of unrelenting attention-seeking - even more than usual. It is fairly normal that from waking until finally falling asleep my mom almost continually seeks my presence and attention. This is pretty much the norm. Except for essentials when I leave her to take a shower or a comfort stop, or to wash dishes or cook a meal, she has my presence. However I firmly refuse to sit talking to her all day - which I know would keep her happy - mainly because I need to preserve my own sanity and pursue my living on the internet.
It was the evening of the second of these days. We had had our meal and she was propped up in bed because the evenings are cold right now. I was working on the computer when suddely I heard the tinkle-tinkle of falling liquid. I looked round to see something I had never seen before. My mom was sitting with her mug in hand held at elbow height upside-down over the edge of the bed, and the whole contents of the mug - more green china tea, no less - lay on the floor and on her bedside table.
She actually looked quite funny sitting there like that and I have no idea if she realised what she was doing or not, but I suspect she did. I was in a live chatroom at the time and one of my friends commented , "Well, she sure managed to get your attention!" Come to think of it, we had music playing in the room (a rare occurrence) and that may have made her feel my attention was diverted from her.
I can't believe it was just the sound of the music, because I have known her rave on really loudly at times and when I tell her she has been calling out she says she wasn't aware of it. You can't help wondering where the truth of it all is............ I will draw a veil of silence over the following clean-up operations.
- - -
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Sunday, August 27, 2006
More Car Episodes
I was talking below about car dramas. A similar situation to the shopping drama occurs if I drive in to my neighbours for a quick chat on the way home. The same attention-getting scenario has been played out there more than once, and the wife now sits in the car chatting with my mom to give me a few minutes peace to talk to her husband, my farming neighbour - a gesture I really appreciate.
One day I was in my driving seat talking to them as they stood by my side of the car. First of all, my mom announced she needed a drink of water, which the wife brought. This has become a ritual - and very often includes "cadging" a biscuit, much to my embarrassment - I frequently now say "no, we will get that at home," when she starts with the drink of water ploy.
Then she complained of a sore back and leg, and turned on a realhy huge hysteria over it, becoming incoherent and mentally and physically agitated to an extreme degree. So we hastily said our goodbyes and I drove down their short drive, opened our adjacent road gate, drove in, closed the gate, got back in the car and realised how quickly she had become quiet. I said to her, "How are you?" She looked at me quite sharply and said, "I'm Fine." (What's wrong with you? - She's good at that.)
I had to count to 10 VERY VERY slowly. Luckily, I had to get out and open my second gate, which gave me what the experts might euphemistically describe as "stress-relieving physical activity". More to the point, it took her out of my immediate range or I might have almost done something un-daughterly. (Heaven forbid - haha!) I have had similar occurrences when talking on the phone to others - the drama starts up and continues until I finish the conversation and turn my attention back to her. I had never before seen anyone "hysterical", but I think this behaviour of hers pretty much fits the description.
These performances surprise me, because by and large she used to be pretty stoical in her behaviour - although my guess is that underneath she also always expected to be the center of attention. And maybe now I am seeing something closer to what she was like as a small child (daddy's favourite I believe), before learning the "appropriate behavior patterns" we all absorb as we grow up.
- - -
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One day I was in my driving seat talking to them as they stood by my side of the car. First of all, my mom announced she needed a drink of water, which the wife brought. This has become a ritual - and very often includes "cadging" a biscuit, much to my embarrassment - I frequently now say "no, we will get that at home," when she starts with the drink of water ploy.
Then she complained of a sore back and leg, and turned on a realhy huge hysteria over it, becoming incoherent and mentally and physically agitated to an extreme degree. So we hastily said our goodbyes and I drove down their short drive, opened our adjacent road gate, drove in, closed the gate, got back in the car and realised how quickly she had become quiet. I said to her, "How are you?" She looked at me quite sharply and said, "I'm Fine." (What's wrong with you? - She's good at that.)
I had to count to 10 VERY VERY slowly. Luckily, I had to get out and open my second gate, which gave me what the experts might euphemistically describe as "stress-relieving physical activity". More to the point, it took her out of my immediate range or I might have almost done something un-daughterly. (Heaven forbid - haha!) I have had similar occurrences when talking on the phone to others - the drama starts up and continues until I finish the conversation and turn my attention back to her. I had never before seen anyone "hysterical", but I think this behaviour of hers pretty much fits the description.
These performances surprise me, because by and large she used to be pretty stoical in her behaviour - although my guess is that underneath she also always expected to be the center of attention. And maybe now I am seeing something closer to what she was like as a small child (daddy's favourite I believe), before learning the "appropriate behavior patterns" we all absorb as we grow up.
- - -
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Saturday, August 26, 2006
Hilarious? Errr......
I just have to relate a "Memorable Event" that occurred this morning. It actually is quite hilarious, though it didn't immediately strike me that way when it happened. It is a kind of confluence between two different aspects of my mom's life.
We gave up using tissues some years ago. My mom went through a period when she had a lot of mucus coming down the back of her throat . The medical profession was not particularly helpful about this, and we just had to ride our way through it - blessedly she is no longer plagued with this problem, probably because I experimented and made some changes in her diet.
At the time though - and it lasted for several years - she required enormous amounts of something to spit into and we would have used several boxes of tissues a day I reckon. Added to that, being basically a tidy-minded soul, when we did have tissues she began to push the pulled-out piece of the next tissue back into the box. And that wasn't all - in time she would follow that with the pieces of tissue she had actually used. Aargh!
So I compromised and bought a nice quality toilet roll - there was much more of it for the price and we didn't have quite the same disposal problems - just over to me to pick it all up from the floor and wherever else it accumulated.
As I may have already mentioned, I have great trouble getting my mom to drink. I make her green china tea and there is always an enamel mug of it sitting on the small table by her side. I am forever making the stuff - or warming it up - and trying to get her to drink it because I know she has headache problems and it's the best stuff I have found to help me on the occasions when I get a headache.
This morning I turned round from working to discover she had sat the toilet roll crookedly on top of her mug of tea, and the part of the roll that was hanging down into the mug had soaked up as much of the tea as it could. The roll was useless, being almost totally soaked in tea - and the tea level for once had diminished quite considerably.
Mission accomplished? Aah well ...............
- - -
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We gave up using tissues some years ago. My mom went through a period when she had a lot of mucus coming down the back of her throat . The medical profession was not particularly helpful about this, and we just had to ride our way through it - blessedly she is no longer plagued with this problem, probably because I experimented and made some changes in her diet.
At the time though - and it lasted for several years - she required enormous amounts of something to spit into and we would have used several boxes of tissues a day I reckon. Added to that, being basically a tidy-minded soul, when we did have tissues she began to push the pulled-out piece of the next tissue back into the box. And that wasn't all - in time she would follow that with the pieces of tissue she had actually used. Aargh!
So I compromised and bought a nice quality toilet roll - there was much more of it for the price and we didn't have quite the same disposal problems - just over to me to pick it all up from the floor and wherever else it accumulated.
As I may have already mentioned, I have great trouble getting my mom to drink. I make her green china tea and there is always an enamel mug of it sitting on the small table by her side. I am forever making the stuff - or warming it up - and trying to get her to drink it because I know she has headache problems and it's the best stuff I have found to help me on the occasions when I get a headache.
This morning I turned round from working to discover she had sat the toilet roll crookedly on top of her mug of tea, and the part of the roll that was hanging down into the mug had soaked up as much of the tea as it could. The roll was useless, being almost totally soaked in tea - and the tea level for once had diminished quite considerably.
Mission accomplished? Aah well ...............
- - -
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Saturday, August 19, 2006
It's My Day Today
It's My Day Today - or, Someone is Trying To Tell Me Something.
After writing the below post, I just happened to glance at the health news ticker I have running on my Health News site and an item entitled "Iodine in bread for brain power" caught my eye.
This article relates a proposal by FANZ (Food Standards Australia New Zealand) which could see IODISED salt (instead of plain salt) added to all biscuits, bread and breakfast cereals under a new proposal to deal with widespread iodine deficiencies in Australasia and encourage better brain development.
This is another interesting read. I believe there are better ways of supplementing with iodine (post below), but it's interesting the authorities are now tying lack of dietary iodine to brain development issues.
Lack of iodine in the developing foetus has long been known as a cause of cretinism. Given the importance of iodine for healthy thyroid function and the thyroid's role in fighting disease and cleansing the blood, one wonders if an improvement in thyroid function would also entail an improvement in brain function in individuals generally, including Alzheimers sufferers.
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After writing the below post, I just happened to glance at the health news ticker I have running on my Health News site and an item entitled "Iodine in bread for brain power" caught my eye.
This article relates a proposal by FANZ (Food Standards Australia New Zealand) which could see IODISED salt (instead of plain salt) added to all biscuits, bread and breakfast cereals under a new proposal to deal with widespread iodine deficiencies in Australasia and encourage better brain development.
This is another interesting read. I believe there are better ways of supplementing with iodine (post below), but it's interesting the authorities are now tying lack of dietary iodine to brain development issues.
Lack of iodine in the developing foetus has long been known as a cause of cretinism. Given the importance of iodine for healthy thyroid function and the thyroid's role in fighting disease and cleansing the blood, one wonders if an improvement in thyroid function would also entail an improvement in brain function in individuals generally, including Alzheimers sufferers.
- - -
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A "Not To Miss" Website
Last night I was researching Kelp on the web because kelp brings the minerals of the ocean into your diet. The mineral composition of human blood is very close to that of seawater. So kelp is a very good way to get assimilable minerals - and it's especially high in iodine, which is needed by your thyroid gland. The iodine in kelp has a wonderful calming effect because it shifts the human motor from high into low gear, as was pointed out years ago by Dr D C Jarvis MD in his books "Folk Medicine" and "Arthritis and Folk Medicine".
After describing two instances in which he used Lugol's solution of iodine to help calm and focus children with racehorse-type personalities, Dr Jarvis says: "Two drops of Lugol's solution of iodine works equally well in an adult. When the stress and strain of daily living create a load that is difficult to carry, producing a state of anxiety, and when the day's problems make it difficult to relax and sleep well at night, then one appreciates the aid that iodine gives."
Try it - either with Kelp, or with Lugol's solution. If you want to use "loose" rather than tabletted kelp, look out for the nice fine powders that are now available. For years I tried to use the granulated form of kelp that was the only loose kelp available, and I found it too rough - I feed that to my dogs and horse instead!
So - while researching kelp on the net, I got onto a website that had me rivetted. Not only is Shirley's Wellness Cafe packed with information and useful links, but the stories of her life and the life of her son Sterling are a must read for all of us who struggle with looking after our family members.
- - -
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After describing two instances in which he used Lugol's solution of iodine to help calm and focus children with racehorse-type personalities, Dr Jarvis says: "Two drops of Lugol's solution of iodine works equally well in an adult. When the stress and strain of daily living create a load that is difficult to carry, producing a state of anxiety, and when the day's problems make it difficult to relax and sleep well at night, then one appreciates the aid that iodine gives."
Try it - either with Kelp, or with Lugol's solution. If you want to use "loose" rather than tabletted kelp, look out for the nice fine powders that are now available. For years I tried to use the granulated form of kelp that was the only loose kelp available, and I found it too rough - I feed that to my dogs and horse instead!
So - while researching kelp on the net, I got onto a website that had me rivetted. Not only is Shirley's Wellness Cafe packed with information and useful links, but the stories of her life and the life of her son Sterling are a must read for all of us who struggle with looking after our family members.
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Friday, August 18, 2006
New Skin Test for Alzheimers
This morning a friend left a URL for me on IM and I think it's something I should just flag here.
It seems a new skin test has been developed that can detect Alzheimers disease in its earliest stages when it's most treatable. I don't know about anyone else reading this but I have to say I definitely do not want to go through this disease twice in a lifetime - the once that I am dealing with now is most certainly enough for me!
I also know from people I talk to sometimes in the real world that folks who have Alzheimers in their family are becoming very fearful for their own futures. If this test really is working, it could be a help to very many lives.
Click HERE for the article. The Editor's Note directly underneath the article itself has some interesting further links to helpful information worth checking out.
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It seems a new skin test has been developed that can detect Alzheimers disease in its earliest stages when it's most treatable. I don't know about anyone else reading this but I have to say I definitely do not want to go through this disease twice in a lifetime - the once that I am dealing with now is most certainly enough for me!
I also know from people I talk to sometimes in the real world that folks who have Alzheimers in their family are becoming very fearful for their own futures. If this test really is working, it could be a help to very many lives.
Click HERE for the article. The Editor's Note directly underneath the article itself has some interesting further links to helpful information worth checking out.
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More of the Same
Experiences of this kind are soul-destroying - exactly the type of thing I was referring to earlier about losing your identity. In fact, my Retail Banker who has been through a similar situation (for a shorter period of time) told me it was months and months after her mother passed on before she shook off the feeling of being hounded when she went shopping.
There is never time to browse, never time to window-shop, never time really for a chat with friends - if one still has any. I bumped into a friend one day on the pavement about 15 feet from my mother's side of the car and in full view of her. This person is an elderly artist who has always supported me with my art, and I hadn't seen her for a couple of years. We stopped to talk and literally in about one minute flat my mother was rapping on her window and waving out to me that she needed attention. I maybe don't have to tell you how angry I was.
It's amazing what we do by way of compromising for the sake of peace. Some time ago, probably in 1999-2000, the same lady invited me to go visit an artist friend of hers - who would have been well worth visitng - and asked me if I would take her in my car. I would really have liked to go, but when I told my mom about the invitation, I got another of those flat, abrupt responses: "Why should you take her out when you could take me?"
The truth of the matter was that at that stage I always took her with me wherever I went and hadn't been out on my own anywhere for years. So I gnashed my teeth. Wisely or not I stayed home as I didn't have anywhere I could readily leave her in those days - If this were to happen now I could probably arrange for her to go into care for the day, although my allowance of Carer Support isn't a bottomless pit.
We don't always see our own situation. Not long ago, a nurse I know who works at the hospital commented, "You are a prisoner in your own home!" It's funny how sometimes our friends can be quite bald about putting out their thoughts. This statement pulled me up with a round turn - I had never quite thought of it in such extreme terms, but in a way she was right and the comment left me feeling miserable for several days. I always regard the Internet as my window on the world and in many ways it is, but that comment left me feeling it was inadequate. It took some mental work to get my equilibrium back again.
- - -
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There is never time to browse, never time to window-shop, never time really for a chat with friends - if one still has any. I bumped into a friend one day on the pavement about 15 feet from my mother's side of the car and in full view of her. This person is an elderly artist who has always supported me with my art, and I hadn't seen her for a couple of years. We stopped to talk and literally in about one minute flat my mother was rapping on her window and waving out to me that she needed attention. I maybe don't have to tell you how angry I was.
It's amazing what we do by way of compromising for the sake of peace. Some time ago, probably in 1999-2000, the same lady invited me to go visit an artist friend of hers - who would have been well worth visitng - and asked me if I would take her in my car. I would really have liked to go, but when I told my mom about the invitation, I got another of those flat, abrupt responses: "Why should you take her out when you could take me?"
The truth of the matter was that at that stage I always took her with me wherever I went and hadn't been out on my own anywhere for years. So I gnashed my teeth. Wisely or not I stayed home as I didn't have anywhere I could readily leave her in those days - If this were to happen now I could probably arrange for her to go into care for the day, although my allowance of Carer Support isn't a bottomless pit.
We don't always see our own situation. Not long ago, a nurse I know who works at the hospital commented, "You are a prisoner in your own home!" It's funny how sometimes our friends can be quite bald about putting out their thoughts. This statement pulled me up with a round turn - I had never quite thought of it in such extreme terms, but in a way she was right and the comment left me feeling miserable for several days. I always regard the Internet as my window on the world and in many ways it is, but that comment left me feeling it was inadequate. It took some mental work to get my equilibrium back again.
- - -
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Monday, August 07, 2006
Explain..............
Maybe I should explain the heading to the last post. Here in New Zealand we have a wonderful children's author called Lynley Dodd, whose alliterative children's books are a household word.
Perhaps her best-loved character is Hairy Maclary from Donaldson's Dairy, who actually featured in a TV ad - I think it was for milk - a few years back. A series of young children and parents were shown "bedtime reading" his most famous escapade:
"Out of the gate and off down the street
Went Hairy Maclary from Donaldson's Dairy..." Etcetera.
For some reason this quote just would not leave my mind when it came to writing the last post - so here's a pic of Hairy Maclary himself, linked to his Author's website: 
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Sunday, August 06, 2006
Out of the Car and Off Down the Street....
Initially Kath wasn't too bad about waiting while I did what I had to do. Then I began to find that she would say to me as I explained that I was going into a shop, "Don't be gone long!" And when I came back "Oh it is SOOO nice to see you again!" - as if I had been away for hours. Then it came to be that if I was away more than a very few minutes she would start to get out of the car - only her lack of mobility prevents her going further - or else open the car door to attract the attention of passers-by. So I would come back to the car to find a group of people around her, which does not make for a good feeling.
I can assure you, it's an awful moment when the Assembled Multitude sees you coming and the heads turn........
On one occasion I took my pc in to be fixed and had to spend a few minutes explaining to the techie what was wrong. When I came out of the shop I found my mother sitting on the pavement on a chair with a very nice couple in charge of her. Where they got the chair from heaven only knows, but as usual the episode made me feel guilty, in spite of having its humorous side.
One day I made the mistake of saying to her "I'm just going into that shop to get - whatever it was - OK?" Her somewhat typical style of response was "Yes, provided you are not gone long." For a second I was speechless. I don't hold with living under provisos and she found that out then and there - assuming she understood what I was on about. Another of those days when the full impact of the situation bore down on me unbearably.
More recently I had to move some funds into my credit card, which is not held by my own bank. I parked outside my bank (lucky day!), went in, drew a little cash and straight to the other bank just 2 doors up the street. I was doing business with a teller when a lady came up to me and said, "Is that your mother in the car out there?" My heart sank - here we go again. The teller said "Off you go!" and I rushed back to the car where another nice lady was sitting on the kerb talking to my mom with her teenage daughter standing alongside. She very kindly said she would stay while I finished my transaction so I went back and hastened through it. I tell you, it's like being under orders.
- - -
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I can assure you, it's an awful moment when the Assembled Multitude sees you coming and the heads turn........
On one occasion I took my pc in to be fixed and had to spend a few minutes explaining to the techie what was wrong. When I came out of the shop I found my mother sitting on the pavement on a chair with a very nice couple in charge of her. Where they got the chair from heaven only knows, but as usual the episode made me feel guilty, in spite of having its humorous side.
One day I made the mistake of saying to her "I'm just going into that shop to get - whatever it was - OK?" Her somewhat typical style of response was "Yes, provided you are not gone long." For a second I was speechless. I don't hold with living under provisos and she found that out then and there - assuming she understood what I was on about. Another of those days when the full impact of the situation bore down on me unbearably.
More recently I had to move some funds into my credit card, which is not held by my own bank. I parked outside my bank (lucky day!), went in, drew a little cash and straight to the other bank just 2 doors up the street. I was doing business with a teller when a lady came up to me and said, "Is that your mother in the car out there?" My heart sank - here we go again. The teller said "Off you go!" and I rushed back to the car where another nice lady was sitting on the kerb talking to my mom with her teenage daughter standing alongside. She very kindly said she would stay while I finished my transaction so I went back and hastened through it. I tell you, it's like being under orders.
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Saturday, August 05, 2006
The Shopping Nightmare
Over the last 4 years, shopping has become a drama. Kath's mobility problems prevent her from going with me into shops, obviously. And the last time I took her into the supermarket about six years ago the place overwhelmed her to tears, so I am not even tempted to grab a wheelchair and try and manage both her and the trolley at once. On the other hand, it's nice to take her out for the drive - but again, it's not altogether as pleasurable for either of us as I would like.
I read an article somewhere that elderly dogs lose the ability to balance their body temperatures and I think the same must be true of humans. My mother is now always "hot" or "cold" - rarely if ever "comfortable". This has been the case for at least 5 years I guess. Whereas you or I might enjoy the warmth of the sun on us in the car, as soon as she feels it, she is "too hot", and she creates a fuss accordingly.
Of course I wouldn't leave her sitting in the car in the full sun anyway, but this sensitivity means I really have to be picky about where I park, wherever I go - depending on whether the sun is shining and what direction it's shining from. I do have choices in our village, but in town, there are few enough parking spaces available anyway. On top of that, my window of opportunity for being away from the car has decreased dramatically and I have to park as close as possible to wherever I am going. So getting parked is a stress from more than one point of view.
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I read an article somewhere that elderly dogs lose the ability to balance their body temperatures and I think the same must be true of humans. My mother is now always "hot" or "cold" - rarely if ever "comfortable". This has been the case for at least 5 years I guess. Whereas you or I might enjoy the warmth of the sun on us in the car, as soon as she feels it, she is "too hot", and she creates a fuss accordingly.
Of course I wouldn't leave her sitting in the car in the full sun anyway, but this sensitivity means I really have to be picky about where I park, wherever I go - depending on whether the sun is shining and what direction it's shining from. I do have choices in our village, but in town, there are few enough parking spaces available anyway. On top of that, my window of opportunity for being away from the car has decreased dramatically and I have to park as close as possible to wherever I am going. So getting parked is a stress from more than one point of view.
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Saturday, July 29, 2006
And Now.........
For the past 4 years, I have spent my days at home. Early on, I had about 14 hours of home help a week, and that gave me time to get away and either go for a ride with friends or go do some shopping. But the second person who filled this role resented my 2 dogs in the house and seemed to prefer sitting making tea for my mom to doing the cleaning, so we parted company and I decided to do without. I know I should have help even at my present reduced level of 9 hours a week - there has been a cutting-down on the amount of hours across the board. But now there is difficulty finding people, so instead my 28 days carer support has been increased to allow me to put Kath into the hospital one day a week so I can go shopping or do housework.
I sorely miss getting regular physical activity - I was accustomed to working hard on this place and when that level of work diminished I took up aerobics and tae-bo, both of which I really enjoyed. I used to take mom with me, but the aerobics in our village shut down and I stopped the tae-bo because I couldn't take her to that. She became so paranoid about being by herself and worked herself up into such a state if left alone that it's been extremely difficult for me to get exercise. In the last few months however she seems to have settled down a bit and become what one of the aides at the hospital called "more co-operative". So I've made up my mind that come what may I am going to take my dogs round the property boundaries for half an hour a day weather permitting.
Our land is pretty steep, so that will be a good workout. I don't see why I should let my body go to rack and ruin along with my social and business life - haha!
- - -
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I sorely miss getting regular physical activity - I was accustomed to working hard on this place and when that level of work diminished I took up aerobics and tae-bo, both of which I really enjoyed. I used to take mom with me, but the aerobics in our village shut down and I stopped the tae-bo because I couldn't take her to that. She became so paranoid about being by herself and worked herself up into such a state if left alone that it's been extremely difficult for me to get exercise. In the last few months however she seems to have settled down a bit and become what one of the aides at the hospital called "more co-operative". So I've made up my mind that come what may I am going to take my dogs round the property boundaries for half an hour a day weather permitting.
Our land is pretty steep, so that will be a good workout. I don't see why I should let my body go to rack and ruin along with my social and business life - haha!
- - -
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Thursday, July 27, 2006
The Noose Tightens
I missed having my business in town and felt defeated that I had given it up. Although I continued to work for one or two clients from a distance, it wasn't easy to keep these contacts going from 20 miles away - and if I went travelling to see people, obviously I had to take my mother with me. That caused more stress and difficulties. I was dabbling with internet businesses but nothing came up at that time to take the place of what I had been doing, although I spent quite some effort and dollars trying to explore online businesses.
Two years later when I got the chance to open up again in our local village, I took it gladly - the whole venue was more relaxed than the town, the little village more casual, and I thought I might be able to make a go of it. That was a big mistake. I soon found that trying to look after my mom and a business in the public eye was just too stressful and regretfully I closed the doors for a second time, with debts over my head. To this day I have people who say they miss my presence there. I guess the best I can say about it is at least I did it -
I would probably have always been wishing I had, otherwise.
At about the same time I also gave up a job in sole charge of a health store on Saturday mornings. I had worked there for 7 years, and was welcome to take my mom with me, which I always did. Basically, she was happy sitting in the room behind the shop and for several years would sometimes even go shopping. But towards the end she could no longer do shopping, and even being there with me when there were no customers was not enough - when I walked out of the back room straight into the shop to serve people, she would call out for me. It became totally untenable. The noose was tightening - on us both I guess, but especially on me.
- - -
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Two years later when I got the chance to open up again in our local village, I took it gladly - the whole venue was more relaxed than the town, the little village more casual, and I thought I might be able to make a go of it. That was a big mistake. I soon found that trying to look after my mom and a business in the public eye was just too stressful and regretfully I closed the doors for a second time, with debts over my head. To this day I have people who say they miss my presence there. I guess the best I can say about it is at least I did it -
I would probably have always been wishing I had, otherwise.
At about the same time I also gave up a job in sole charge of a health store on Saturday mornings. I had worked there for 7 years, and was welcome to take my mom with me, which I always did. Basically, she was happy sitting in the room behind the shop and for several years would sometimes even go shopping. But towards the end she could no longer do shopping, and even being there with me when there were no customers was not enough - when I walked out of the back room straight into the shop to serve people, she would call out for me. It became totally untenable. The noose was tightening - on us both I guess, but especially on me.
- - -
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Tuesday, July 25, 2006
Alzheimers Carers Community
A couple of days ago I was invited by a friend in Singapore to join a new, free program called Earnpals, which I did, and I found one of the features it offers is the ability to form Communities - so yesterday I set up a Community for Alzheimers Carers. I thought this might be another good way to reach out to carers on the net. Membership of Earnpals also entitles you to a blog, a photo album, and access to all the communities that members have created.
If anyone would like to join me in this - here is my link: http://www.earnpals.com/?17103
I am going into this to reach out and make some friends, more than anything.
Patricia
- - -
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If anyone would like to join me in this - here is my link: http://www.earnpals.com/?17103
I am going into this to reach out and make some friends, more than anything.
Patricia
- - -
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Monday, July 24, 2006
Promising Alzheimers Research Report
This report was published in our New Zealand press yesterday:
"Australians announce one-a-day pill for Alzheimers disease."
"Melbourne - Australian scientists may have found a cure for Alzheimers disease.
In a world first, a Melbourne research team has developed the once-a-day pill to combat the brain disease. Human trials of the drug start next month, the Sunday Herald Sun says.
The drug, known as PBT2, was developed by the Mental Health Research Institute of Victoria in partnership with Prana Biotechnology in Melbourne.
"It is a major breakthrough and very much a Melbourne discovery," said Professor George Fink, the director of the Mental Health Research Institute. "Though much depends on the next phase of human clinical trials, ...early results indicate this drug offers hope to people with Alzheimers disease."
Prof Fink said the drug could prevent or delay Alzheimers from developing.
Many scientists accept amyloid is a major cause of Alzheimers and clinical tests have found the drug acts fast, lowering amyloid levels by 60% within 24 hours.
It also found PBT2 suppressed the impairment of memory function."
-AAP
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"Australians announce one-a-day pill for Alzheimers disease."
"Melbourne - Australian scientists may have found a cure for Alzheimers disease.
In a world first, a Melbourne research team has developed the once-a-day pill to combat the brain disease. Human trials of the drug start next month, the Sunday Herald Sun says.
The drug, known as PBT2, was developed by the Mental Health Research Institute of Victoria in partnership with Prana Biotechnology in Melbourne.
"It is a major breakthrough and very much a Melbourne discovery," said Professor George Fink, the director of the Mental Health Research Institute. "Though much depends on the next phase of human clinical trials, ...early results indicate this drug offers hope to people with Alzheimers disease."
Prof Fink said the drug could prevent or delay Alzheimers from developing.
Many scientists accept amyloid is a major cause of Alzheimers and clinical tests have found the drug acts fast, lowering amyloid levels by 60% within 24 hours.
It also found PBT2 suppressed the impairment of memory function."
-AAP
- - -
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Sunday, July 23, 2006
Don't Leave Me Alone
Over time Kath has developed a total phobia of being left alone - even for a few minutes at a time.
Initially after my father's death in August 1985 things went along as normal. She lived with me in Cambridge until Christmas and I worked as usual. The next year I brought her up here and she lived alone for about 8 months on the property while a builder completed the house. I drove up whenever I could at weekends and holidays, but continued living in my own home about 5 hours' drive away while working out my lecturing contract with the Waikato Polytechnic until the end of 1986.
Once I moved up here, I travelled from time to time on Dairy Goat Council business, being away sometimes for several days on a stretch, without any problems whatsoever. I also took the Certificate in Business Computing (a 6 months' course) at our local Polytechnic in 1993 and lectured a semester in Business Law at the same institution the following year - all of which involved working in town on a number of weekdays. I left her at home without any problems. In 1995-96 I became a central figure in our district's fight to save our hospital, and that involved meetings once or twice a week in our local village - again, no problems.
The change, when it came, was quite sudden. Over Christmas 1996 - 1997 I had two good work opportunities - few and far between at that time in this part of the world. One was with a law firm in a town about an hour's drive away. The other was the chance to open my own computer graphics business in our nearest small town about 20 minutes drive from here. My mother's reaction to the first proposal was a flat, "Well, I'm not going to be left here on my own all day." The reaction was so strong and abrupt that it surprised me.
This coupled with the prospect of at least two hours' drive every weekday made me choose the second option - which I have to say was closer to my heart. It was probably the best decision, because it wasn't more than a couple of months before I had to arrange things so I could take her with me to my own office daily, and only a matter of time until, due to redevelopment of the premises and likely changes in the adjacent tenants, that option wasn't really viable either. So early in 1998 I brought the business home - forfeiting all the advantages of having a presence in the town's business arena.
- - -
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Initially after my father's death in August 1985 things went along as normal. She lived with me in Cambridge until Christmas and I worked as usual. The next year I brought her up here and she lived alone for about 8 months on the property while a builder completed the house. I drove up whenever I could at weekends and holidays, but continued living in my own home about 5 hours' drive away while working out my lecturing contract with the Waikato Polytechnic until the end of 1986.
Once I moved up here, I travelled from time to time on Dairy Goat Council business, being away sometimes for several days on a stretch, without any problems whatsoever. I also took the Certificate in Business Computing (a 6 months' course) at our local Polytechnic in 1993 and lectured a semester in Business Law at the same institution the following year - all of which involved working in town on a number of weekdays. I left her at home without any problems. In 1995-96 I became a central figure in our district's fight to save our hospital, and that involved meetings once or twice a week in our local village - again, no problems.
The change, when it came, was quite sudden. Over Christmas 1996 - 1997 I had two good work opportunities - few and far between at that time in this part of the world. One was with a law firm in a town about an hour's drive away. The other was the chance to open my own computer graphics business in our nearest small town about 20 minutes drive from here. My mother's reaction to the first proposal was a flat, "Well, I'm not going to be left here on my own all day." The reaction was so strong and abrupt that it surprised me.
This coupled with the prospect of at least two hours' drive every weekday made me choose the second option - which I have to say was closer to my heart. It was probably the best decision, because it wasn't more than a couple of months before I had to arrange things so I could take her with me to my own office daily, and only a matter of time until, due to redevelopment of the premises and likely changes in the adjacent tenants, that option wasn't really viable either. So early in 1998 I brought the business home - forfeiting all the advantages of having a presence in the town's business arena.
- - -
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Saturday, July 22, 2006
The Sleeping Arrangements Drama
Another big drama was with sleeping arrangements. When we first moved back up home in 1986-87 we lived as she had done for 15 years with my dad in a small A-frame cottage with sleeping/sitting benches on either side and a sink and cooking bench under the front window. It is an awesome little place with the design and feel of a boat interior, built by my dad for them to live in while they built the main house. So essentially we were both in the same room.
When we moved over to the big house after its completion, we slept initially on mattresses on the floor in the smaller room until my furniture arrived. We then fitted out the two bedrooms with my queen-sized bed in her larger room and a single bed in my room. Although she had lived in the A-frame alone for about 8 months in 1986, Kath put up a fuss about sleeping alone and I moved in with her for a short time, but I positively hated it and finally went back to my own room next door.
That lasted for some time - it was during this period that I heard her trying to get the cat to sleep with her - but eventually she would keep getting up and coming to me in my room during the night. I got so fed up with her coming in and waking me that I finally moved back in with her. Again, I hated it. Once more, the relentless persistence.
Now that her mobility is more impaired, we have moved downstairs to be warmer and closer to my workspace, and for the last 2 years I have actually had a bed of my own again - a squab on top of a bench, while she has the bed down here. But at least it's my own "bed", and I don't feel like I am sleeping with my mother. Be thankful for small mercies, Patricia!
- - -
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When we moved over to the big house after its completion, we slept initially on mattresses on the floor in the smaller room until my furniture arrived. We then fitted out the two bedrooms with my queen-sized bed in her larger room and a single bed in my room. Although she had lived in the A-frame alone for about 8 months in 1986, Kath put up a fuss about sleeping alone and I moved in with her for a short time, but I positively hated it and finally went back to my own room next door.
That lasted for some time - it was during this period that I heard her trying to get the cat to sleep with her - but eventually she would keep getting up and coming to me in my room during the night. I got so fed up with her coming in and waking me that I finally moved back in with her. Again, I hated it. Once more, the relentless persistence.
Now that her mobility is more impaired, we have moved downstairs to be warmer and closer to my workspace, and for the last 2 years I have actually had a bed of my own again - a squab on top of a bench, while she has the bed down here. But at least it's my own "bed", and I don't feel like I am sleeping with my mother. Be thankful for small mercies, Patricia!
- - -
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Our Places 2
I have just added an update to the story of my current garden on Virtual Garden Safari. If you go HERE, and click on the new MORE link at the bottom of the page you will get to some more recent photos. I love my "garden", for all its faults, and it helps keep me grounded.
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Friday, July 21, 2006
More Warning Signs
There were also signs of a shortened attention span - although I didn't see them as that, at the time. If we were out at social gatherings or meetings - usually to do with the goat business: I was Secretary of our Breed Club and on the Dairy Goat Breeders' Council - she was always quick to break up the party and remind me that we had better leave to go get on with the work at home. "Work" again. She was usually right, of course - a nice little bit of controlling, probably brought on by her losing the thread of conversations. Even more pronounced was the evening TV episode.
I am not a great one for watching TV, but on winter nights when our work was over and our meal cooked, I enjoyed an hour watching the news and current affairs programs at dinner time. It began to be that as soon as we had finished eating my mother would start to organize: "Well, we'd better get on and get the dishes washed." "Look" I would say,"I have been working all day - I am going to watch the news." A few minutes later the whole episode would be repeated. I stuck to my guns but it was a battle. I didn't realise that she had lost concentration on the screen. And, unbeknown to me - here was another clue: she wasn't realising that she was repeating herself. I just thought she was being a bit more organising and work-driven than usual.
One night I heard her in her bedroom next to mine trying to persuade one of the cats to join her on the bed. She must have gone on at that cat for about 20 minutes. "My Gosh," I thought,"she's persistent, allright." That was just the start.
I can't quite remember at what point I took over cooking the evening meals totally, and exactly what triggered it, but one evening I just knew I had to do it. It wasn't that she was leaving elements turned on or any of the "usual" things - more likely that she was having trouble knowing how to get the meal prepared. The dish washing - which I took over a little later - sticks more in my memory. With me doing the cooking she would wash and I would dry. One night I found she was not putting washing-up liquid in the water. I pointed this out and was told not to be so silly. So after a couple of these episodes I took over the washing up - and she did the drying for quite a while after that - even when she had some difficulty standing at the bench.
- - -
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I am not a great one for watching TV, but on winter nights when our work was over and our meal cooked, I enjoyed an hour watching the news and current affairs programs at dinner time. It began to be that as soon as we had finished eating my mother would start to organize: "Well, we'd better get on and get the dishes washed." "Look" I would say,"I have been working all day - I am going to watch the news." A few minutes later the whole episode would be repeated. I stuck to my guns but it was a battle. I didn't realise that she had lost concentration on the screen. And, unbeknown to me - here was another clue: she wasn't realising that she was repeating herself. I just thought she was being a bit more organising and work-driven than usual.
One night I heard her in her bedroom next to mine trying to persuade one of the cats to join her on the bed. She must have gone on at that cat for about 20 minutes. "My Gosh," I thought,"she's persistent, allright." That was just the start.
I can't quite remember at what point I took over cooking the evening meals totally, and exactly what triggered it, but one evening I just knew I had to do it. It wasn't that she was leaving elements turned on or any of the "usual" things - more likely that she was having trouble knowing how to get the meal prepared. The dish washing - which I took over a little later - sticks more in my memory. With me doing the cooking she would wash and I would dry. One night I found she was not putting washing-up liquid in the water. I pointed this out and was told not to be so silly. So after a couple of these episodes I took over the washing up - and she did the drying for quite a while after that - even when she had some difficulty standing at the bench.
- - -
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Thursday, July 20, 2006
First Warning Signs 2
As I've had feedback from the first part of this post, and people are connecting with my earlier comments, I'll just develop this line of thought a little. Unawareness of the concerns of others is a painful reality for the caregiver.
About four years ago I had a riding accident. This was at a time when I was still able to take my mom over to a friend's place and we could leave her sitting in front of the television for an hour while we went out for a ride. I was riding a horse called "Killer" (silly me!) and he threw me and dislocated my left elbow. Fortunately, we were not too far from my friend's place so she took the horses home, packed my mom into the back of her vehicle, and returned for me. In considerable pain, I had to hold onto my arm while walking. We arrived at the clinic about 3.30pm and then had to go up the road to get x-rays taken, then back to the clinic. The doctors examined the x-rays and said they would either have to reduce the dislocation then and there, or else I would have to go an hour and a half's drive to the nearest sizeable hospital.
They left me to ponder on this news, and I waited quite some time before they got back to me, as one or two accidents came in that day. They finally got my elbow back in and my friend drove us home - there I was at teatime cooking a meal for us both with my arm in a sling. I take my hat off to my friend - she took charge wonderfully, ferried me wherever I had to go and kept an eye on both me and my mom. All my mom was aware of that day was that she was "left alone" in someone's car, and she wanted a drink of water.
Again, the drink of water. The funny thing is she only ever takes a small sip when she gets it - I suspect it's an attention-getting ploy like children use when they are put to bed. I often say that if I was drowning in the middle of our pond she would stand on the bank and tell me she needs a drink of water. Maybe I should make a cartoon of that.
- - -
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About four years ago I had a riding accident. This was at a time when I was still able to take my mom over to a friend's place and we could leave her sitting in front of the television for an hour while we went out for a ride. I was riding a horse called "Killer" (silly me!) and he threw me and dislocated my left elbow. Fortunately, we were not too far from my friend's place so she took the horses home, packed my mom into the back of her vehicle, and returned for me. In considerable pain, I had to hold onto my arm while walking. We arrived at the clinic about 3.30pm and then had to go up the road to get x-rays taken, then back to the clinic. The doctors examined the x-rays and said they would either have to reduce the dislocation then and there, or else I would have to go an hour and a half's drive to the nearest sizeable hospital.
They left me to ponder on this news, and I waited quite some time before they got back to me, as one or two accidents came in that day. They finally got my elbow back in and my friend drove us home - there I was at teatime cooking a meal for us both with my arm in a sling. I take my hat off to my friend - she took charge wonderfully, ferried me wherever I had to go and kept an eye on both me and my mom. All my mom was aware of that day was that she was "left alone" in someone's car, and she wanted a drink of water.
Again, the drink of water. The funny thing is she only ever takes a small sip when she gets it - I suspect it's an attention-getting ploy like children use when they are put to bed. I often say that if I was drowning in the middle of our pond she would stand on the bank and tell me she needs a drink of water. Maybe I should make a cartoon of that.
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Wednesday, July 19, 2006
Our Places
If you would like to see the two properties that my parents developed here in the Far North of New Zealand, please visit their display pages on my Virtual Garden Safari site at:
Darwin Road
Greystone
The second one is the property I live on now. I have decided to open this site free to my friends who are caring for loved ones. If you'd like to send me some pics and a write-up of your garden I would be glad to publish them for you. Just go HERE, click on Join Us and fill out the form. Don't be shy - you only have to send pictures of the good bits of your garden, or your favourite plants......
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Darwin Road
Greystone
The second one is the property I live on now. I have decided to open this site free to my friends who are caring for loved ones. If you'd like to send me some pics and a write-up of your garden I would be glad to publish them for you. Just go HERE, click on Join Us and fill out the form. Don't be shy - you only have to send pictures of the good bits of your garden, or your favourite plants......
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Tuesday, July 18, 2006
Helpful Information
I am breaking into my narrative to bring you what I consider to be a really useful piece of information.
Last week a client suggested I try my mom on Chamomile Tea. When I got out my herbals, I was surprised to find that as well as having a reputation for aiding sleep and calming the stomach, it helps with "youthful mental alertness". So I grabbed a packet from our supermarket and started her on it a couple of days ago.
I am amazed at the result. The worst aspect of her disease to me was the mental negativity, which was all-pervading and continuous. I have to report that since drinking this tea for the last couple of days, she is more positive and cheerful. That is something I had thought never, ever to see again.
I should perhaps say that although I don't expect any improvement in the condition itself, a more cheerful disposition would make my job immeasurably lighter.
- - -
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Last week a client suggested I try my mom on Chamomile Tea. When I got out my herbals, I was surprised to find that as well as having a reputation for aiding sleep and calming the stomach, it helps with "youthful mental alertness". So I grabbed a packet from our supermarket and started her on it a couple of days ago.
I am amazed at the result. The worst aspect of her disease to me was the mental negativity, which was all-pervading and continuous. I have to report that since drinking this tea for the last couple of days, she is more positive and cheerful. That is something I had thought never, ever to see again.
I should perhaps say that although I don't expect any improvement in the condition itself, a more cheerful disposition would make my job immeasurably lighter.
- - -
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Monday, July 17, 2006
The First Warning Signs
The first real warning sign came in about 1993 when we both had a check-up with an iridologist, who commented fairly casually that she could see some changes taking place in the frontal part of Kath's brain. But as often happens with something we have never had dealings with, it didn't occur to us to connect that with Alzheimers - if we even knew of the disease at that time. Ignorance is bliss. For the time being.
Then I began to notice little things - a sort of growing, irrational personal protectiveness. If I drove the car off the tarseal onto the rough at the side of the road and it wasn't sitting level she would hang onto her seat and freeze up. The word "me" came more and more into conversation, especially in the phrases "don't hurt me" "mind out for me" "mind me" "mind my legs" or whatever - and all this I can now see as the early stages of what has developed into an anxiety complex, along with the self-focussing that seems to be a part of this disease process. At the same time, she began to be less aware of the needs of others. Many times before in life I had felt that though she had a good dash of the "What about the neighbours?" attitude, she didn't really always appreciate other people's position on things. That trait became more and more pronounced.
I can remember at one point when we had a very busy spell with the goats and I was working extremely hard physically - building fences and pens as well as doing the animal routines - that I would be exhausted by evening. On a couple of occasions as we were doing the evening work in the shed I said to her, "I am exhausted - I could lie down right here in the mud and sleep." I meant it - I really, really meant it. The response was "Well, we'll just get on with the work." I could even feel a touch of "What on earth is wrong wth you?" Shortly after, I had a very scary episode with my heart. I was the one who rang the hospital - with my heart still palpitating. They sent the ambulance for me and I spent the night in intensive care.
- - -
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Then I began to notice little things - a sort of growing, irrational personal protectiveness. If I drove the car off the tarseal onto the rough at the side of the road and it wasn't sitting level she would hang onto her seat and freeze up. The word "me" came more and more into conversation, especially in the phrases "don't hurt me" "mind out for me" "mind me" "mind my legs" or whatever - and all this I can now see as the early stages of what has developed into an anxiety complex, along with the self-focussing that seems to be a part of this disease process. At the same time, she began to be less aware of the needs of others. Many times before in life I had felt that though she had a good dash of the "What about the neighbours?" attitude, she didn't really always appreciate other people's position on things. That trait became more and more pronounced.
I can remember at one point when we had a very busy spell with the goats and I was working extremely hard physically - building fences and pens as well as doing the animal routines - that I would be exhausted by evening. On a couple of occasions as we were doing the evening work in the shed I said to her, "I am exhausted - I could lie down right here in the mud and sleep." I meant it - I really, really meant it. The response was "Well, we'll just get on with the work." I could even feel a touch of "What on earth is wrong wth you?" Shortly after, I had a very scary episode with my heart. I was the one who rang the hospital - with my heart still palpitating. They sent the ambulance for me and I spent the night in intensive care.
- - -
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Rumbles
I guess the first thing that ever happened was on a visit by my parents to our capital city, Wellington, where I was living and working. This would have been in the mid-late 1970s, which is going back a bit. We were all out in town, looking around on a busy working day. My dad and I were engrossed in discussing something and it suddenly dawned on me that Kath was not with us. "Where's Kath?" I said. We looked behind us and there was no sign of her in the crowds. "Don't worry," he replied, "She'll turn up - she gets like this sometimes."
Sure enough, she did turn up - I can't remember any explanation of where she had been, and at the time I passed the episode off. But my father's comment has come back to me now, as has her own stories of an "Aunty Kate" who used to go wandering out of the house and down the street and who had the habit of breaking up biscuits on the plate. About which, more later.......
I can also remember my dad mentioning to me on several occasions that she was noisy round the house, especially with handling crockery. I can recall suggesting they get her eyesight tested, as maybe she was having vision problems with judging distance. Once I started living with her, I found she could crash a cup down on a saucer quite forcibly - enough to make you jump out of your skin if you were not ready for it. She didn't seem to be aware of what she was doing and it was fruitless to try and alter the behaviour as my dad no doubt found out. I cannot remember anything like that from my younger years. We have now graduated to one of my tin tramping mugs (the bright orange enamel one) which doesn't break if dropped and has no saucer to crash on, thank goodness.
Probably the only other thing was that once she started to lose mobility in the mid 1990s, I found her inordinately heavy on me if I gave her my arm in walking. She would just let me take her whole weight, and at the time I kind of found it surprising that she seemed to have no awareness whatsoever of how she was dragging down on my arm. I am sure this ties in with the general lack of awareness of others that became more obvious later, and somehow in an uncanny way my mind at the time associated this with that slight manual clumsiness she had always had.
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Sure enough, she did turn up - I can't remember any explanation of where she had been, and at the time I passed the episode off. But my father's comment has come back to me now, as has her own stories of an "Aunty Kate" who used to go wandering out of the house and down the street and who had the habit of breaking up biscuits on the plate. About which, more later.......
I can also remember my dad mentioning to me on several occasions that she was noisy round the house, especially with handling crockery. I can recall suggesting they get her eyesight tested, as maybe she was having vision problems with judging distance. Once I started living with her, I found she could crash a cup down on a saucer quite forcibly - enough to make you jump out of your skin if you were not ready for it. She didn't seem to be aware of what she was doing and it was fruitless to try and alter the behaviour as my dad no doubt found out. I cannot remember anything like that from my younger years. We have now graduated to one of my tin tramping mugs (the bright orange enamel one) which doesn't break if dropped and has no saucer to crash on, thank goodness.
Probably the only other thing was that once she started to lose mobility in the mid 1990s, I found her inordinately heavy on me if I gave her my arm in walking. She would just let me take her whole weight, and at the time I kind of found it surprising that she seemed to have no awareness whatsoever of how she was dragging down on my arm. I am sure this ties in with the general lack of awareness of others that became more obvious later, and somehow in an uncanny way my mind at the time associated this with that slight manual clumsiness she had always had.
- - -
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Sunday, July 16, 2006
Kath's Health
From a personality point of view Kath was less "passionate" than my dad and I. She didn't get as excited about things or as deeply involved. We were all Fire subjects - my dad was a Leo, I am an Aries (almost Taurus), and she is a Sagittarius - definitely the coolest of the three. She got on well with people and had the skill which I think her family must have called "making conversation" - all three of us together could talk for hours. When we were not doing things.
There is only one thing that she always had and that was a kind of minor lack of motor skills - and I remember this from when I was a child. My dad and I were always good in that department, but she often had to be helped or shown several times how to do things with her hands. It is very hard to express this satisfactorily but it was enough of a feature to be memorable - as I say, from right back in my childhood. Along with that, the other thing that sticks in my mind was that she used to get butter on her fingers whenever she used it. Having said all that, she was certainly skilful enough as a seamstess, and she and I used to make our own clothes when I was a teenager. Probably her motor problem lay in getting her mind and hands around a set of actions for the first few times.
She was rarely - if ever - sick. My only memories are of appedicitis when I was very young, some anaemia, and some years later a slipped disc, which the doctor dealt with in good old-fashioned style, ordering 3 weeks bed rest with a board under the mattress. That injury did return to haunt her later, causing scoliosis of the upper spine which was aggravated by a minor car accident. So she has had reduced mobility for about 11 years, becoming more and more bent recently. Before this accident occurred, I can remember twice in one night waking in a sweat to a clear vision of her bent and tottering on her feet. Once in a night is bad enough but twice was unspeakably dark and foreboding.
- - -
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There is only one thing that she always had and that was a kind of minor lack of motor skills - and I remember this from when I was a child. My dad and I were always good in that department, but she often had to be helped or shown several times how to do things with her hands. It is very hard to express this satisfactorily but it was enough of a feature to be memorable - as I say, from right back in my childhood. Along with that, the other thing that sticks in my mind was that she used to get butter on her fingers whenever she used it. Having said all that, she was certainly skilful enough as a seamstess, and she and I used to make our own clothes when I was a teenager. Probably her motor problem lay in getting her mind and hands around a set of actions for the first few times.
She was rarely - if ever - sick. My only memories are of appedicitis when I was very young, some anaemia, and some years later a slipped disc, which the doctor dealt with in good old-fashioned style, ordering 3 weeks bed rest with a board under the mattress. That injury did return to haunt her later, causing scoliosis of the upper spine which was aggravated by a minor car accident. So she has had reduced mobility for about 11 years, becoming more and more bent recently. Before this accident occurred, I can remember twice in one night waking in a sweat to a clear vision of her bent and tottering on her feet. Once in a night is bad enough but twice was unspeakably dark and foreboding.
- - -
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Saturday, July 15, 2006
Kath's Life
My mom had an excellent head for figures and when she left school at 16 took a job in the office of a large bakery, ending up in charge there. She didn't work when I was a child, but as I reached my mid teens she went back to accounting both when we moved to Zimbabwe, and later in New Zealand. She could add up a column of figures faster than an adding machine. She had a very strong work ethic which accounts for the high regard she was held in by her employers - always looking for work to do. This lifelong characteristic actually prevented me from picking up on some of the early signs of her disease.
She and my father had a great marriage. He was the one with the practical know-how and the dreams. She was a great support system and that's something I don't forget. She was not creative in the same way as my dad and I, and I was often aware that she did't have a hobby, until they moved to this property and started running black sheep. She took to spinning, so the wool became her hobby. She used to spin some very beautiful fine wool and I still have her wheel and some samples of her spinning.
She was always very active, walking to and from work (she loved walking). From 1966 she helped my father develop from scratch two 10 acre properties here in the Far North and build what was to be their home. Then when his illness caught up with him, for 5 years she supported him through that. After he died of leukaemia in 1985 and I later moved up here and stepped into his shoes, she carried on, working hard with me for several years on a dairy goat stud I ran on our own place and a 100 acre run-off property I acquired. That is another story.
- - -
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She and my father had a great marriage. He was the one with the practical know-how and the dreams. She was a great support system and that's something I don't forget. She was not creative in the same way as my dad and I, and I was often aware that she did't have a hobby, until they moved to this property and started running black sheep. She took to spinning, so the wool became her hobby. She used to spin some very beautiful fine wool and I still have her wheel and some samples of her spinning.
She was always very active, walking to and from work (she loved walking). From 1966 she helped my father develop from scratch two 10 acre properties here in the Far North and build what was to be their home. Then when his illness caught up with him, for 5 years she supported him through that. After he died of leukaemia in 1985 and I later moved up here and stepped into his shoes, she carried on, working hard with me for several years on a dairy goat stud I ran on our own place and a 100 acre run-off property I acquired. That is another story.
- - -
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Wednesday, July 12, 2006
Help Comes
Then out of the blue I found a helpful tool - Mike Brescia's "Think Right Now! for Windows", which you will find Here, and that and my painstaking efforts began to bring peace and a new sense of confidence. Two and a half years down the track I am now debt-free and my online graphics business and Art sales are beginning to yield me a little return, because doors have opened for me to sell my art without leaving my home. I have some small goals in mind, and they are starting to materialise. I am not out of the woods yet - life is not that simple - and I know that this need to monitor the brain is an ongoing work, but I also sense that the keys to my future are slowly coming within my reach.
As far as my mom is concerned, the position has not changed, but my feelings about the situation have changed, and that is the crucial part. Master this concept: The outside circumstances will not change until the inner thought patterns have changed FIRST. My favourite saying is a wonderful quote that can be interpreted and applied at so many levels: "The price of freedom is eternal vigilance".
- - -
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As far as my mom is concerned, the position has not changed, but my feelings about the situation have changed, and that is the crucial part. Master this concept: The outside circumstances will not change until the inner thought patterns have changed FIRST. My favourite saying is a wonderful quote that can be interpreted and applied at so many levels: "The price of freedom is eternal vigilance".
- - -
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Tuesday, July 11, 2006
Black Night of the Soul 2
So there I was, with all this weighing heavily. I literally didn't know any more what I wanted to achieve with my life. This is no exaggeration.
All that stood before me seemed to be the downward slope. Even my beloved art seemed to be a hopeless cause - it was very hard to settle down and create a painting that I could not be sure of selling quickly, when I badly needed money "NOW".
Desperate, I analysed my situation, and decided I couldn't do anything about having to look after my mom, but I could do something about my thinking. What we think - consciously or subconsciously - is the key to what we get in life - I knew that. I also realised I was in danger of bringing about the very situation that I feared most.
I turned again to my favourite self-help books by John Kehoe. I didn't know how to correct whatever was wrong with my thought patterns, they must run so deep. I understood goals and visualising, but even that was beyond me. After all the crashes, I had no faith in my ability to come up with sensible goals. "Visualising" was a bad joke - not to mention impossible. Things were black and I knew it.
I formed a plan, borne out of the barren wasteland of my mind - get right back to basics, none of this fancy visualising, goal-setting stuff. Focus totally on weeding out the brain's incessant chatter from day to day, minute to minute. This was entirely my own plan - so I asked for guidance, tried to know it was on its way, and monitored my thought patterns - rigorously. Every time I caught myself worrying about my future and losing my home, I looked around me for things to give thanks for right there, and did just that every minute I could. I gave thanks for the sky and the trees and the flowers and the house I live in, instead of looking at all the things about the place that needed doing.
I gave thanks for my pets instead of reflecting that maybe they shouldn't be in the house, or chiding myself because someone had made a mess. I gave thanks for my mother. I tried to pick up on every single little negative thought and turn it into a thanks instead of a stress factor.
This is NOT an easy practice - it requires concentration, determination and persistence, long term. The brain loves wallowing in negativity and doesn't like being disciplined at first - it will in fact try to make you feel like a fool for saying anything positive.
Just say the positive, grateful stuff anyway, whether you believe in what you are saying or not. Believe me, this is THE KEY to turning your life around, and I outline it here in the hope it will help someone else battling with the problems of being a caregiver.
- - -
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All that stood before me seemed to be the downward slope. Even my beloved art seemed to be a hopeless cause - it was very hard to settle down and create a painting that I could not be sure of selling quickly, when I badly needed money "NOW".
Desperate, I analysed my situation, and decided I couldn't do anything about having to look after my mom, but I could do something about my thinking. What we think - consciously or subconsciously - is the key to what we get in life - I knew that. I also realised I was in danger of bringing about the very situation that I feared most.
I turned again to my favourite self-help books by John Kehoe. I didn't know how to correct whatever was wrong with my thought patterns, they must run so deep. I understood goals and visualising, but even that was beyond me. After all the crashes, I had no faith in my ability to come up with sensible goals. "Visualising" was a bad joke - not to mention impossible. Things were black and I knew it.
I formed a plan, borne out of the barren wasteland of my mind - get right back to basics, none of this fancy visualising, goal-setting stuff. Focus totally on weeding out the brain's incessant chatter from day to day, minute to minute. This was entirely my own plan - so I asked for guidance, tried to know it was on its way, and monitored my thought patterns - rigorously. Every time I caught myself worrying about my future and losing my home, I looked around me for things to give thanks for right there, and did just that every minute I could. I gave thanks for the sky and the trees and the flowers and the house I live in, instead of looking at all the things about the place that needed doing.
I gave thanks for my pets instead of reflecting that maybe they shouldn't be in the house, or chiding myself because someone had made a mess. I gave thanks for my mother. I tried to pick up on every single little negative thought and turn it into a thanks instead of a stress factor.
This is NOT an easy practice - it requires concentration, determination and persistence, long term. The brain loves wallowing in negativity and doesn't like being disciplined at first - it will in fact try to make you feel like a fool for saying anything positive.
Just say the positive, grateful stuff anyway, whether you believe in what you are saying or not. Believe me, this is THE KEY to turning your life around, and I outline it here in the hope it will help someone else battling with the problems of being a caregiver.
- - -
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Reality
As you see, even in New Zealand the welfare state is not really a welfare state at all, it has become a business - or more correctly a business within a business. For all government is a business - and usually a badly run one at that. The difference now is that instead of paying taxes to give ourselves some overall benefits - like health care, education and elderly care - we pay larger taxes, and on top of that we have to pay for whatever other services we use - payment a second time. Even state schools these days rely heavily on parents to supplement funding - one way or another. Welcome to the brave new world. Whoever dreamed up "user pays" in the 1970s? That was the beginning of the end, the blueprint for extortion.
From time to time I remind myself - all this nonsense is a byproduct of so-called civilization. In the real nitty-gritty world far removed from the welfare state, there is no home help, no respite care, no carer support - at least, none run by bureaucracy - no bureaucracy even! Look after your own as best you can, but at least you don't pay taxes (maybe), don't have Big Brother looking over your shoulder (maybe). No doubt there's a Big Brother of some sort lurking somewhere, with his hand held out. "Life was nasty, brutish and short". Maybe the "short" wasn't a bad thing.......... I am digressing.
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From time to time I remind myself - all this nonsense is a byproduct of so-called civilization. In the real nitty-gritty world far removed from the welfare state, there is no home help, no respite care, no carer support - at least, none run by bureaucracy - no bureaucracy even! Look after your own as best you can, but at least you don't pay taxes (maybe), don't have Big Brother looking over your shoulder (maybe). No doubt there's a Big Brother of some sort lurking somewhere, with his hand held out. "Life was nasty, brutish and short". Maybe the "short" wasn't a bad thing.......... I am digressing.
- - -
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Monday, July 10, 2006
The Figures
In New Zealand, government charges out longterm care at the rate of about NZ$630 per week. On today's exchangs rate as I write this, that equates to US$386 weekly. Private rest homes would charge more. Obviously, I can't afford that.
My contribution to the national economy over the last 9 years has been to keep my mother at very little government expense. A little home help (about 12 months worth all told I think - I haven't had any for over 2 years), 28 days (mostly less) Carer Support per year for perhaps 3 years, and 1 week per month Respite Care, which started at the beginning of this year - that's 6 weeks.
And if I come to the point where I really cannot handle the caregiver's role any more, government will turn round and reward me by taking the one thing I have left - my home.
Like I said - don't let them steal your identity. Maybe I should make out an account for 9 years of full-time care at $630 per week - that's about NZ$235,000 by my reckoning - and present it to the government health agencies. THEN we might get round to talking turkey.
- - -
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My contribution to the national economy over the last 9 years has been to keep my mother at very little government expense. A little home help (about 12 months worth all told I think - I haven't had any for over 2 years), 28 days (mostly less) Carer Support per year for perhaps 3 years, and 1 week per month Respite Care, which started at the beginning of this year - that's 6 weeks.
And if I come to the point where I really cannot handle the caregiver's role any more, government will turn round and reward me by taking the one thing I have left - my home.
Like I said - don't let them steal your identity. Maybe I should make out an account for 9 years of full-time care at $630 per week - that's about NZ$235,000 by my reckoning - and present it to the government health agencies. THEN we might get round to talking turkey.
- - -
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The Bottom Line
I know without a shadow of a doubt that if I owned this place and had absolutely nothing to lose by putting my mom into care, I would not have done a single thing differently from what I have done so far. In fact if I did own the place she and my father worked so hard to develop, for some strange reason it would probably be harder for me to even consider putting her into care.
My real worries lie in the future. The completely, totally and always uncertain future. I am haunted by those elderly permanent residents I see in our hospital and rest home, placed in special padded, reclining chairs and fed with spoons. Many people around me don't know how I carry on now. My fear is how I will carry on under those conditions.
- - -
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My real worries lie in the future. The completely, totally and always uncertain future. I am haunted by those elderly permanent residents I see in our hospital and rest home, placed in special padded, reclining chairs and fed with spoons. Many people around me don't know how I carry on now. My fear is how I will carry on under those conditions.
- - -
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Black Night of the Soul
Just over 2 years ago, I could not see anything good left in life for me. By way of background, I am lawyer by profession and worked as a government lawyer and a law tutor. I was successful at my job, had my own home, and a comfortable income. After my father's early death (leukaemia), I was faced with the decision of staying put with a job, or moving home to the country without one. Never one to pass up a challenge, I chose the latter option.
This is not the place to go into details, but suffice to say for 17 years everything I touched to bring in an income failed - largely for reasons outside my control. The final failures were due to the growing restrictions imposed by my mom's condition. It was like being thwarted at one turn after another. On top of that, I had lost my capital, and my last attempt at business left me in debt.
There I was living on the dole, with debts to meet, and completely tied to the house looking after my mom. With 2/3 of our income derived from her - her own pension and an army pension of my dad's - I couldn't see how I could afford to keep the lovely place I had moved home to enjoy. I felt I was staring down an endless black tunnel for my future - where had all the promise of my earlier years gone? How was I going to survive if my mom died?
How was I going to survive if she didn't? The land is still in her name because I put my capital into developing a business. In this country and probably in yours too, government has now empowered itself to sieze the property of elderly people going into fulltime care, to offset the cost of keeping them. At the very least if I put her into care, they would impose a caveat on the place and out of their kindness allow me to live there until I die. Isn't that nice? I can tell you - it would be the last straw.
- - -
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This is not the place to go into details, but suffice to say for 17 years everything I touched to bring in an income failed - largely for reasons outside my control. The final failures were due to the growing restrictions imposed by my mom's condition. It was like being thwarted at one turn after another. On top of that, I had lost my capital, and my last attempt at business left me in debt.
There I was living on the dole, with debts to meet, and completely tied to the house looking after my mom. With 2/3 of our income derived from her - her own pension and an army pension of my dad's - I couldn't see how I could afford to keep the lovely place I had moved home to enjoy. I felt I was staring down an endless black tunnel for my future - where had all the promise of my earlier years gone? How was I going to survive if my mom died?
How was I going to survive if she didn't? The land is still in her name because I put my capital into developing a business. In this country and probably in yours too, government has now empowered itself to sieze the property of elderly people going into fulltime care, to offset the cost of keeping them. At the very least if I put her into care, they would impose a caveat on the place and out of their kindness allow me to live there until I die. Isn't that nice? I can tell you - it would be the last straw.
- - -
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Sunday, July 09, 2006
Most of All....
Above all else, I'm grateful for the Internet - it has kept me sane over the past 9 years. Thank God I was online when my mother's illness really manifested, with some graphics and webdesign skills already in the making. I can't imagine what would have happened otherwise. Bow out and take off? With a houseful of furniture, 3 dogs, 5 cats, several goats, a horse and 5 ducks - and nowhere to put them? Not that easy either with no job and nothing in the bank. That's another story too....
The Internet does two things for me. When my mom's demands have tightened ever and ever closer round my neck, and my options for running an offline business have been chopped off one by one, I can still reach out and make contact with other normal people round the world. That's what helps preserve my own entity and sense of worth - without it I could not have survived. I wish every caregiver in a situation like mine could have it. Secondly, I can see the net holds the key to my financial future, once my mother moves on. And I desperately need that key.
- - -
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The Internet does two things for me. When my mom's demands have tightened ever and ever closer round my neck, and my options for running an offline business have been chopped off one by one, I can still reach out and make contact with other normal people round the world. That's what helps preserve my own entity and sense of worth - without it I could not have survived. I wish every caregiver in a situation like mine could have it. Secondly, I can see the net holds the key to my financial future, once my mother moves on. And I desperately need that key.
- - -
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Saturday, July 08, 2006
Things I am Grateful For
Before going further, I want to acknowledge some things that I truly am grateful for. I know it is highly likely that these things are going to change - and probably very soon. But up to now and for the present, I am very much aware of the small blessings I do have.
Firstly, my mom is continent. That's not to say we haven't had several disasters at different times - due in part to me having to accustom myself to asking someone else regularly if they want to go to the bathroom. She also tends not to be aware of her needs - or not to voice them - until the last minute. I know the hospital where she goes for care has this problem also, because occasionally she comes back in nappies: they have limited staff who cannot be everywhere all the time. It's "easier" for me because basically I have to be within sight and earshot of her 24 hours a day. But I am truly grateful that up to now her brain has been working her bladder and bowel properly. To complement this, I prepare foods that avoid the dreaded constipation issue, and I bake bread for her using wholewheat and raising it with baking soda, because she has trouble with yeast.
Secondly, my mom can feed herself. I take care to ensure I give her food she can chew comfortably. All crusts come off the toast and slices are cut up small, vegetables are steamed, meat has to be chopped up finely and she eats finger food, or from a bowl using a spoon. I carry plastic knives and plates in the car so if we buy takeaways I can cut them up for her. Eating is not a tidy procedure and often I wince at the mess, but I just have to manage. If anyone looks inside my beaten-up old bomb of a Ute while it's parked in our very upmarket nearest small town, they must wonder what they've struck. It's like having children - except it gets worse, instead of better. And what's more, I am not too sure how long this blissful situation will last.
Thirdly, in spite of her longstanding mobility problems, my mom can still manage to walk short distances with a walking frame. We are able to use the bathroom. I can get her out to the car for short journeys. I am grateful for this, though there has been a toll on my body at times. Thank goodness I have a really good chiropractor. And one who's more concerned with fixing his patients that making a fortune out of them.
Fourthly, my mom still recognizes me. There are some qualifications here because very often these days she calls me by the name of her elder sister Evie, who died with a brain tumor when I was a small child. But she knows I am family and she is far from being a vegetable mentally. In fact she talks almost continuously during her waking hours - aargh!!!!!!!
- - -
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Firstly, my mom is continent. That's not to say we haven't had several disasters at different times - due in part to me having to accustom myself to asking someone else regularly if they want to go to the bathroom. She also tends not to be aware of her needs - or not to voice them - until the last minute. I know the hospital where she goes for care has this problem also, because occasionally she comes back in nappies: they have limited staff who cannot be everywhere all the time. It's "easier" for me because basically I have to be within sight and earshot of her 24 hours a day. But I am truly grateful that up to now her brain has been working her bladder and bowel properly. To complement this, I prepare foods that avoid the dreaded constipation issue, and I bake bread for her using wholewheat and raising it with baking soda, because she has trouble with yeast.
Secondly, my mom can feed herself. I take care to ensure I give her food she can chew comfortably. All crusts come off the toast and slices are cut up small, vegetables are steamed, meat has to be chopped up finely and she eats finger food, or from a bowl using a spoon. I carry plastic knives and plates in the car so if we buy takeaways I can cut them up for her. Eating is not a tidy procedure and often I wince at the mess, but I just have to manage. If anyone looks inside my beaten-up old bomb of a Ute while it's parked in our very upmarket nearest small town, they must wonder what they've struck. It's like having children - except it gets worse, instead of better. And what's more, I am not too sure how long this blissful situation will last.
Thirdly, in spite of her longstanding mobility problems, my mom can still manage to walk short distances with a walking frame. We are able to use the bathroom. I can get her out to the car for short journeys. I am grateful for this, though there has been a toll on my body at times. Thank goodness I have a really good chiropractor. And one who's more concerned with fixing his patients that making a fortune out of them.
Fourthly, my mom still recognizes me. There are some qualifications here because very often these days she calls me by the name of her elder sister Evie, who died with a brain tumor when I was a small child. But she knows I am family and she is far from being a vegetable mentally. In fact she talks almost continuously during her waking hours - aargh!!!!!!!
- - -
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My Pet Hate
While I'm in this vein, if there's one thing that makes me really, really angry, it's the people (usually in the elderly care services) who say to me, "Now, you've got to look after yourself - what will happen to your mother if something happens to you?"
The first time someone said that to me, my jaw dropped. PARDON?? No-one ever dared underestimate me like that in all my time with the government. Have these people no brain? Or have they no tact? Let's be honest - a comment as dumb and mindless as that is about all that's needed to totally destroy a caregiver whose life is being slowly consumed by the demands of a dementia patient. I want to say to these people (and have on occasion), "I don't care what happens to my mother if something happens to me - I CARE ABOUT ME if something happens to me - for crying out loud!"
If you are a caregiver, everything conspires to deny your true identity. Set a high priority on your own worth and integrity and don't let anyone steal it, ever - and that includes your patient. About which, more later.
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
The first time someone said that to me, my jaw dropped. PARDON?? No-one ever dared underestimate me like that in all my time with the government. Have these people no brain? Or have they no tact? Let's be honest - a comment as dumb and mindless as that is about all that's needed to totally destroy a caregiver whose life is being slowly consumed by the demands of a dementia patient. I want to say to these people (and have on occasion), "I don't care what happens to my mother if something happens to me - I CARE ABOUT ME if something happens to me - for crying out loud!"
If you are a caregiver, everything conspires to deny your true identity. Set a high priority on your own worth and integrity and don't let anyone steal it, ever - and that includes your patient. About which, more later.
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Telling It Like It Is
Think about it - put yourself in the shoes of someone you know whose life is tied up as a caregiver - and don't fudge the issue with excuses like "Oh, but she likes doing it.", "Oh, but it gives her someone to care for." It's natural not to want to face this issue - but it's also inexcusable, especially for other family members. So think carefully and take some responsibility in your family circumstances, if this applies to you. I have no siblings to take issue with, but I know if I had I would be fair vexed to be expected to sacrifice my quality of life, future, and earning capacity for them and their offspring.
My mother's family was no different from most. Of the 6 children my grandmother bore, only 4 were still living at my grandfather's death - 2 girls and 2 boys - 2 marriages and 2 broken marriages. For whatever reasons, none of them took my grandmother in. She apparently didn't have dementia problems and looked after her own brother for awhile, but tired of being unpaid housekeeper to a man who would do nothing around the place and wanted to spend all his days in the local library. She sent him packing and I guess she died alone. I often think of those few things I can remember about her.
My father's military family had other traditions. Daughters were intended to look after elderly parents, apparently - I guess it was the kind of family tradition that no-one ever tells you about. My father's twin sister was a single career woman and looked after their mother until she died, but then flew like a bird to the USA and worked and lived in the Boston area for about 26 years. Good for her. As for me - well, my dad (especially) and mom were never in line with the idea of me marrying. In fact my dad made sure I was programmed from a very early age.... "A career" was a much better option. Say no more. There were some other factors involved in my staying single, but there are still times when I have to work very hard to keep my thoughts and feelings towards my parents "charitable" on this topic - especially now!
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
My mother's family was no different from most. Of the 6 children my grandmother bore, only 4 were still living at my grandfather's death - 2 girls and 2 boys - 2 marriages and 2 broken marriages. For whatever reasons, none of them took my grandmother in. She apparently didn't have dementia problems and looked after her own brother for awhile, but tired of being unpaid housekeeper to a man who would do nothing around the place and wanted to spend all his days in the local library. She sent him packing and I guess she died alone. I often think of those few things I can remember about her.
My father's military family had other traditions. Daughters were intended to look after elderly parents, apparently - I guess it was the kind of family tradition that no-one ever tells you about. My father's twin sister was a single career woman and looked after their mother until she died, but then flew like a bird to the USA and worked and lived in the Boston area for about 26 years. Good for her. As for me - well, my dad (especially) and mom were never in line with the idea of me marrying. In fact my dad made sure I was programmed from a very early age.... "A career" was a much better option. Say no more. There were some other factors involved in my staying single, but there are still times when I have to work very hard to keep my thoughts and feelings towards my parents "charitable" on this topic - especially now!
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How I Broke the Rule
I came from a small family unit of 2 parents and a child, isolated from relatives by "the army life" and brought up to be creative rather than to socialise. I was never exposed to caring for the elderly, still less dealing with Alzheimers disease. When you are unaware, the disease creeps up on you before you have time to know what it is or even consider how you are going to deal with it. For sure, if I had known what I was in for 20 years ago I would have arranged many things differently, or else run - and then had to wear the guilt and lose my inheritance.
But there are bigger implications than this. In our society, it is usually the role of the single daughter in the family to look after the elderly parents, or sometimes the single son. Everyone else tends to duck for cover, of course - far too busy rearing families, running businesses, or making money. Hmm... This cosy little routine needs calling in question, because it throws a huge burden on the family member who has the least support to help deal with it. It's as if the child who hasn't married has some debt to repay that the rest of society is exempt from.
The situation is often brushed aside - "Sis is living with mom and looking after her." Well, isn't that nice? For her, or for everyone else? Has anyone seriously thought what it's like to live alone day in and day out with someone whose body and brain are not fully functioning? I can't tell you how much I wish at times that I could hang out with someone who can do up their own seatbelt, make a cup of tea, and wipe their own bottom after going to the bathroom. Not to mention carry on a meaningful conversation.
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Friday, July 07, 2006
The First Rule
The First Rule is - "Be Aware". If you have come here because you are already dealing with Alzheimers, then you have some essential awareness already. If you have just happened by, then you should make yourself aware pronto, whatever your age or station. The mass of Baby Boomers is marching onwards down the corridors of life.
Stick around and find out what it's like to be a Caregiver.
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Stick around and find out what it's like to be a Caregiver.
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Kathleen
I have posted in the sidebar a picture of my mom in her younger years, before Alzheimers struck her. I did this to remind myself, and others reading this, that she was a vibrant, hardworking, thinking person who deserves to be remembered as such. I have trouble with that, these days - the present is so much upon me.
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What This Blog is About
I feel guilty writing about my mom's Alzheimers condition, and it has taken me a few years to come to this. But I need to do it for myself, and maybe for others out there too. This Blog is not about "What is Alzheimers Disease and What can be Done About It?" With over 45 million pages on the subject out there on the net, anyone with eyes and a brain can bone up on that. Nor am I coming from "What Options are there for Alzheimers Care?" With over 33 million pages the same applies - and your options may be different from mine anyway.
I am looking at what a really close connection with an Alzhemers sufferer means for the person most intimately involved - not someone who has put their relative "into care" and for whatever reason has opted out of any real connection with the daily drama. It is only THERE - IN THAT DAILY DRAMA - that the truth starts to bite, only there that one is forced to come to terms with the full reality of what has happened, what is happening, and what may yet happen.
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
I am looking at what a really close connection with an Alzhemers sufferer means for the person most intimately involved - not someone who has put their relative "into care" and for whatever reason has opted out of any real connection with the daily drama. It is only THERE - IN THAT DAILY DRAMA - that the truth starts to bite, only there that one is forced to come to terms with the full reality of what has happened, what is happening, and what may yet happen.
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Thursday, July 06, 2006
The Carer
I need to say from the outset that I hope this blog will be of help to someone, somewhere.
I have looked after my mother in various stages of Alzheimers for over 9 years now. I am her only relative living in New Zealand. I have no husband, lover, sibling, or any other form of personal, caring support.
There are times when I have felt totally alone in this world and times when I have cursed myself uphill and down dale for getting into this situation.
This blog is going to be a frank exposé of my struggles and feelings on the whole topic of Alzheimers and caring. I hope it will help someone else in the same situation as I am in, even if only to the extent of feeling that they are most certainly not alone in this mad Alzheimers Carer's world.
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
I have looked after my mother in various stages of Alzheimers for over 9 years now. I am her only relative living in New Zealand. I have no husband, lover, sibling, or any other form of personal, caring support.
There are times when I have felt totally alone in this world and times when I have cursed myself uphill and down dale for getting into this situation.
This blog is going to be a frank exposé of my struggles and feelings on the whole topic of Alzheimers and caring. I hope it will help someone else in the same situation as I am in, even if only to the extent of feeling that they are most certainly not alone in this mad Alzheimers Carer's world.
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Technorati Tags:
alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
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