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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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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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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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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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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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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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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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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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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