Tell tale signs

Yesterday I went to see my mother. She is going through a very alert stage although she is now immobile and has little language. She knew me which is a plus. Both sisters arrive during this week so I am hoping that she is like this for them.

When I got home George had eaten his morning tea and was sitting on the couch. He appeared more confused than usual. His mouth was slack. I have come to recognise this as a sign that things are not going too well. I sent him to have a sleep on the bed. He actually slept for a long time and when he awoke he was a hundred times better. I have found this several times so now know to look for that sign.

You need to watch the person you are caregiving for and look for the signs to give you warning so you can intervene early.

Birthdays

This morning I took George for a blood test (we had to wait about an hour for it). When he was asked his date of birth he had no idea at all.

This year it is George's 80th birthday; a milestone Alzheimer's or not. When it was his mother's 80th birthday we had an afternoon tea for her friends and family at our home. When it was my mother's 80th birthday I had a dinner party at my home for her close friends and family including one of my sisters who travelled from Australia for it. This year for George I do not know what I am going to do. Most of his friends are dead or living away and apart from me there are no other family members here. I will have to try to think of something special for him for that day.

It is my mother's 87th birthday next week and both of my sisters are visiting for it so she will have all three of us here this time. I hope that she is awake and able to understand that day.

Keeping organised

Today I was trying to get some things done. George's Monday caregiver was supposed to take him out for coffee today but rang just before she was due to get her to say she was sick. George then got himself ready and came to me and announced that I could take him. Something I have found with both Mum and George is that it is better to do what they want rather than not doing it. Frankly I did not want to go out but George does want to go out every day.

He insisted on coming into the supermarket with me and handed me some stuff (from the car) while we were in there. I was trying to hold on to that and dropped some cards from my wallet which I did not realise until I got home. We went and he had a coffee and pie while I had a coffee. I then left something else there!! I was feeling pretty stressed knowing what I had hoped to accomplish today.

A couple of hours after we got home he was going to go on the bus down to Brighton!!

Mum was also like this but then George and mum were together during the day and did quite a bit together and I was working. During that time it was at weekends I had mum with me most of the time and took her out everywhere but also it meant that I was not worrying about things much during the day and had 'ordinary people' to converse with.

It can certainly try your patience at times.

Confusion

George woke up this morning and came out and drank his coffee. He didn't know where the milk was for his cornflakes (in the fridge) and when I asked if he wanted another coffee he told me he hadn't had the first one (he had). He was generally very confused. When he is like this I find it easiest to give him breakfast and then send him back to bed for an hour. This seems to help. When he gets up later he is much better.

However he is getting more confused!!

We came home from Harakeke Club yesterday and on the way home I told him we were going to see a friend tomorrow morning. About an hour after we came home I found him in the garage sitting in the car ready for me to take him to see the friend!! I brought him inside and explained that would happen tomorrow and that it was nearly time for tea. He settled down then.

My mum is often awake during the night at the home. When she was mobile she destroyed everything by loving them to death. Now that she is not I have been trying to put up bright pictures and mobiles in the room. She obviously likes them and has commented to staff that 'they are beautiful'.

Death

Two people from Mum's home have died in the last fortnight. One, had no near relatives (his wife had died earlier) and some old neighbours had his EPA and visited him regularly. He was often upset and would sit and cry. The other was an attractive woman with four children. I met two of them visiting their mother. One of these was a son who had returned from overseas last year when he knew that his mother's days were numbered. He made the decision to stay here for as 'long as it took'. The children went in at tea time to encourage her to eat her meal. Having all her children here had really given her a boost (she had been extremely close to death a year ago). I was in the day before and she sat at the table with mum and I always gave her chocolate and had a chat. She was just the same that day and went to sleep that night and did not wake up. Certainly a lovely way to go for her.

The big thing is that her children know that they all did as much as they possibly could and were there for her. I am sure that they have no regrets. I know that when my father died I was so pleased I was with him and had been holding his hand when he went to sleep.

 I know that often mum doesn't know whether I am there or not but I would feel guilty if I did not go in and that was a day when she did know. I think it is important that people do what they can so that they know that they did what they could. However having said that I know that I will always carry the guilt of putting her into the home even though I do know that it was my only option at the time. Frankly putting her into a home had never crossed my mind as I thought that I had organised things so that would never have to happen.

Now I am in the unenviable position of having to do the same thing sometime in the future with George.

Visitors

Had a lovely surprise yesterday when an acquaintance popped in for coffee. It is so nice to see other people and just sit and have a chat about normal things.

George came and sat with us for a while and then went and sat inside as I think he was bored. He is best with one to one conversation and because he is slow to get his sentence out it becomes difficult when there are a few people.  George still recognises everyone and knows about what is going on in the world. His continence problems arise as he is so slow at doing anything and I think he starts to go before he sits on the toilet. I am now reminding him to go when I see he has not been for a while.

Australian Women's Weekly

I have just been reading an article in an old Australian Women's Weekly by Susan Horsburgh about her father with Alzheimer's. I can relate to a lot of what she writes.

Initially he stayed at home with her mother caring for him. Susan visited them regularly and says it was  like death by a thousand cuts; nothing diminishes a person quite like it. She says her brothers did not find it so difficult. This is so true as each person perceives it in a different way.

The disease has not only robbed Dad of his memories, it has warped the way he thinks and the way he acts. It's so stealthy, it's muddled my memories, too, making me wonder when my dad ended and the disease began.

I once read a quote: "Memory is a way of holding onto the things you love, the things you are, the things you never want to lose."

As your memories evaporate, I imagine it's like feeling the foundations of your life erode from under you.

She continues by discussing the role of caregivers:

Beyond the memory loss, it's the personality and behavioural changes that have broken my heart — and tested my patience. In the media, the typical Alzheimer's story tends to feature a saintly spouse who happily cares for their often cantankerous, incontinent partner for years without complaint.

I don't think that that portrayal is fair on the carers struggling just to get through each day. As Dad's Alzheimer's took hold, it didn't matter how many times I told myself it was a degenerative brain disease, the repetitive, illogical behaviour could be exhausting.

Try driving with someone who recites the words of every street sign and billboard you pass, or finding someone dressed for work and eating cereal at 11pm, convinced it's morning and refusing to go to bed.

Try answering the question, "What are we doing?" every 10 minutes — for hours on end.

Alzheimer's isn't just forgetting your shopping list; it's being handed a phone and not knowing what it's for.

Dad once held up a crossword puzzle half-finished in his own handwriting and asked, "Who did this?" When he could still walk, he'd studiously step on all the footpath cracks like a superstitious child.

I'm not proud of it, but in the early years, I desperately missed my smart, sweet dad and sometimes resented the detached, insensitive stranger who'd taken his place.

These are all things many caregivers will relate to.

Later her father went into a home and the relationship between him and family members changed. Although, for the most part, he did not know them obviously there were times that he did and he knew that they were people who 'belonged to him'. Even now my mum is like that. Strangely enough she continued to know people even when her Alzheimer's was advanced and after she had gone into the home. George still knows everyone and about things happening in the world but has these other, cognitive, problems - as Mum did.
 

Clothes

Poor George has no idea about what is appropriate in the line of clothes.

The other night, while I was getting tea, he went into the bedroom and pulled out a lot of clothes and came out wearing:

• two T-shirts
• three shirts
• a pair of trousers inside out
• his old school cap

This is taking the layered look a bit far.