I've talked about my mother's hysterias. These are pretty much "full on" dramas. She also has a more low key version, which occurs quite frequently. In fact, her "raves" are pretty regular and predictable - mostly when she has lost immediate contact with someone else to use as a point of reference and validation. It must be an awful situation to be in. For me, I just don't know how much she's aware of what she's doing.
If I go out of her sight, it isn't long (about 2 minutes max) before she starts up -usually calling out "Is anybody there?" "Help!" or "Come on! Come on!" - a call we used to herd our dairy goats together. If I have work to do upstairs, like baking or washing dishes, I can hear the commotion down below. Then I know I don't have much time to get the job done.
The same thing happens if I take a rest during the day. I often work till about midnight, but my mom never sleeps in. And once she wakens - 5.30 or 6.00 am - I have to be awake. Add to this the strain of being basically on duty 24/7 plus online work and you can maybe see that sometimes I really begin to fade after lunch. If it gets really bad, I just have to lie down on my bench/bed.
I am still only a few feet from her, but as soon as I lie down, I become "invisible", and then it starts. I have been amazed at times by her capacity to keep up a running diatribe, sprinkled with the words and phrases I mentioned above, for probably half an hour on end.
Sometimes I cave in and get up again. Sometimes I am so exhausted I just lie there drifting in and out of sleep with an unrelenting wave of sound washing over me. It has occurred to me more than once that if someone came into the room while this was going on, they would probably brand me as "uncaring" because there I was sleeping while my poor mother was having hysterics. I remember one day waking up and lying for a few moments listening. It dawned on me with full force that in the olden days they would have called her "mad" - if any of us know what "mad" really means. It's amazing what we get used to - and what we conceal from ourselves, too.
As a final addendum, I've often asked her, "Did you know you have been calling out?" Her unfailing answer has always been "No." It's hard to know if this is an honest answer, and she really does not know what she's doing from one minute to the next, or if it's a childlike cover-up.
Living in this kind of Alice-in-Wonderland world can really make you wonder sometimes if YOU'RE going nuts. I am reinforced in this by my dear neighbour who has very recently started dealing with the first signs of Alzheimers in his wife. I try to support him as much as I can, especially by calling in and being there for him to talk to. He said the other day that there are times he wonders if he's losing it.
Have no fear- it comes with the territory.
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Saturday, July 05, 2008
Wednesday, July 02, 2008
Pain - To Be or Not To Be
I don't have any doubt but that my mom has pain and I wish with all my heart I could remove it from her life. I know she has back and neck pain and leg pain - what I don't really know is the extent of it, because she can make the complaint that "It Hurts!" as readily when I am carefully cleaning her fingernails as about what I would expect to be more serious stuff. I noticed one day when the District Nurse used a swab held in forceps to clean out a small lesion on the side of her big toe, she went into screaming mode. So I suspect her reaction to pain could be a little overdone.
The big problem I have is doing anything about it. Trying to make her take tablets or capsules is a huge drama. Capsules are out of the question from a swallowing point of view, but sometimes I can manage to get Panadol (paracetamol) tablets down her, crushed up and given with a meal. The medical profession's suggested alternative - liquid Panadol elixir, with its syrupy sweetness and ersatz "orange" flavour - is absolute anathema to her, to the point where she simply flatly refuses to take it. And I wouldn't offer it to her any more, because I believe that is what gives her thrush in the mouth from time to time.
So I am between the devil and the deep. There are alternative solutions like MSM gluconate, which I think is very effective as well as beneficial, but the taste of that has to be experienced to be believed. Again, capsules are out of the question and as soon as you break one open and take out the powder, the taste is right there. You or I might pull a face and get the stuff down because we know it will help us, but my mom just performs and refuses.
Kath also has headaches quite often. For these I make her green china tea which works excellently for me. But I take 3 or 4 cups when I have a bad head - and it's gone. Trying to get my mom to drink one cup is a mission. I will make it, and she pronounces it "too hot". It stands a little while, and unless I am really on the ball, it becomes "too cold" ( Goldilocks and the Three Bears ). Another frustrating thing is that, even if she's been full-on demanding a drink, she will only take a sip at a time these days when she gets it. And when the cup gets down to 2/3 full she looks inside it and comments "There isn't much there". Waaah - count to 10 again Patricia.......
I tell her frequently that headaches come from a lack of body fluid and she should drink more, but that doesn't have much effect. I have to keep reminding her to drink and the best way is by letting her see me drinking. So I make sure to do that regularly, encouraging her to drink at the same time - and I suppose I am getting some benefit by keeping up my own fluid intake!
All my enquiries of the nurses and the patient log at the hospital lead me to believe my mom doesn't complain as much of pain when she is in the hospital as she does here at home - which rather reinforces my suspicion that there is a measure of attention-seeking going on in all of this. Plus perhaps a healhy dose of "best behaviour when out in public". Aaah me - if only we were blessed with the knowledge to understand what's REALLY going on.
- - -
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
The big problem I have is doing anything about it. Trying to make her take tablets or capsules is a huge drama. Capsules are out of the question from a swallowing point of view, but sometimes I can manage to get Panadol (paracetamol) tablets down her, crushed up and given with a meal. The medical profession's suggested alternative - liquid Panadol elixir, with its syrupy sweetness and ersatz "orange" flavour - is absolute anathema to her, to the point where she simply flatly refuses to take it. And I wouldn't offer it to her any more, because I believe that is what gives her thrush in the mouth from time to time.
So I am between the devil and the deep. There are alternative solutions like MSM gluconate, which I think is very effective as well as beneficial, but the taste of that has to be experienced to be believed. Again, capsules are out of the question and as soon as you break one open and take out the powder, the taste is right there. You or I might pull a face and get the stuff down because we know it will help us, but my mom just performs and refuses.
Kath also has headaches quite often. For these I make her green china tea which works excellently for me. But I take 3 or 4 cups when I have a bad head - and it's gone. Trying to get my mom to drink one cup is a mission. I will make it, and she pronounces it "too hot". It stands a little while, and unless I am really on the ball, it becomes "too cold" ( Goldilocks and the Three Bears ). Another frustrating thing is that, even if she's been full-on demanding a drink, she will only take a sip at a time these days when she gets it. And when the cup gets down to 2/3 full she looks inside it and comments "There isn't much there". Waaah - count to 10 again Patricia.......
I tell her frequently that headaches come from a lack of body fluid and she should drink more, but that doesn't have much effect. I have to keep reminding her to drink and the best way is by letting her see me drinking. So I make sure to do that regularly, encouraging her to drink at the same time - and I suppose I am getting some benefit by keeping up my own fluid intake!
All my enquiries of the nurses and the patient log at the hospital lead me to believe my mom doesn't complain as much of pain when she is in the hospital as she does here at home - which rather reinforces my suspicion that there is a measure of attention-seeking going on in all of this. Plus perhaps a healhy dose of "best behaviour when out in public". Aaah me - if only we were blessed with the knowledge to understand what's REALLY going on.
- - -
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Monday, June 30, 2008
Don't Lose Yourself
It's really wierd how deeply this stuff affects our lives. Just before I finally finished working at the local Health Shop, the new owners did a "review" of my work standards. I need to explain that this is quite a small shop, with a small room out the back, and for a few weeks before I finally quit the job because of mom's health, I did some weekday work for them because I had some home help.
On weekdays, part of the duties involved unpacking incoming stock in the back room, checking it off against the invoice and putting it into plastic bins ready to be taken out front and put on the shelves. There were several of us working there on weekdays - it wasn't a sole charge situation like I had on Saturday mornings.
One of the main shop rules was that if the buzzer went off in the shop, indicating that someone had come in the door, one had to go up front and make sure they were being attended to.
I was a good friend of the shop owners and my review took place over a cup of coffee with the wife at a local restaurant. I got a very good review, except for one thing. "Why," she asked me, "do you not go up front when the buzzer rings and you are unpacking stock?"
I was quite flabbergasted - because having been sole charge on Saturdays for 7 years, I was very used to responding to that buzzer.
Then it dawned on me - unpacking and checking off stock required concentration. Living with mom and doing computer graphics, which also required concentration, I'd developed an ability to focus my attention in spite of a general flow of extraneous sound. Selective hearing, if you like. I explained to her and she said, "I thought so - because once or twice while you've been unpacking I've spoken to you and you didn't reply."
Oh My Gosh.
I was lucky these people were friends and fully understood the situation I was in. But it shook and embarrassed me to realise that this modification of behaviour had crept up on me unawares.
- - -
Technorati Tags:alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
On weekdays, part of the duties involved unpacking incoming stock in the back room, checking it off against the invoice and putting it into plastic bins ready to be taken out front and put on the shelves. There were several of us working there on weekdays - it wasn't a sole charge situation like I had on Saturday mornings.
One of the main shop rules was that if the buzzer went off in the shop, indicating that someone had come in the door, one had to go up front and make sure they were being attended to.
I was a good friend of the shop owners and my review took place over a cup of coffee with the wife at a local restaurant. I got a very good review, except for one thing. "Why," she asked me, "do you not go up front when the buzzer rings and you are unpacking stock?"
I was quite flabbergasted - because having been sole charge on Saturdays for 7 years, I was very used to responding to that buzzer.
Then it dawned on me - unpacking and checking off stock required concentration. Living with mom and doing computer graphics, which also required concentration, I'd developed an ability to focus my attention in spite of a general flow of extraneous sound. Selective hearing, if you like. I explained to her and she said, "I thought so - because once or twice while you've been unpacking I've spoken to you and you didn't reply."
Oh My Gosh.
I was lucky these people were friends and fully understood the situation I was in. But it shook and embarrassed me to realise that this modification of behaviour had crept up on me unawares.
- - -
Technorati Tags:alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
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