Ask a stupid question...

Most of the time, when I visit, George is accepting of what is happening and appears happy. 

This week I nearly burst into tears. 

George was OK when I first went in and we chatted about various things as George had some chocolates. He was rather confused but reasonably happy. He then got up and started walking using his walker.

"Darling, where would you like to go?" I asked. 

To my horror I watched as his face crumbled and he nearly burst into tears as he whimpered, "I want to go home". 

I quickly started talking and saying about how our house was being fixed after the earthquakes. He calmed down and we walked down to the lounge. 

This is the first time he has said anything about home. 

I felt awful for the rest of the day. There are times when it is very demoralizing, very sad. You can only do your best and everyone needs to be safe and well cared for. Unfortunately the time does come when one person is not enough to look after the needs of a person with Alzheimer's. 

Politics

My goodness so much going on in the world today; Britain has left the EU, Australia can't work out who will be the next government, in the US Donald Trump is taken as a serious contender for President.

Here, in New Zealand, we are a small country in the south of the Southern Hemisphere. What happens in other countries throughout the world effects us. We rely on exports and imports. We only have just over 4 million people here so what happens in other countries is important to us.

I tell George about what is going on. Now he is not capable of any understanding of what is going on. Sometimes I think this is a good way to be. Don't know what is going on and don't care! I guess there are also plenty of people who are like this who do not suffer from dementia. I am reminded of the Hawaiian saying 'don't worry, be happy'. A great mantra for all of us.

I took George some new shoes today. They have a well cushioned sole which I am hoping will help with his mobility.

Watch this space...

Mobility

George's mobility is certainly not as good as it was when he went into the home. Even with the walker he will only go short distances. At the moment he prefers to sit and chat. He loves chocolate milkshakes so I have been taking them into him. It is important that he drinks a lot as he seems to be getting urinary infections. These make people more confused. Mum was the same.

I have found that I am as busy as ever. Going to see George each day takes a considerable chunk out of the day. I am also looking at stuff for the flat such as colour schemes. I am bring home plenty of fliers to try to sort out a few things. I have ordered some things such as a bath and shower. Many people here don't have a bath but there are times when I enjoy one.

I got George some handles to use in the shower. These are held on by suction and are really fantastic. Another carer told me about them and I was skeptical but put two up in the shower and then held on with all my weight and they supported me, no trouble. They are really great. In fact the builder I have was suitably impressed and also wants some!

Confusion

I find that when George has been doing things out of routine especially when it is social things, he gets very confused the next day. Mum was the same. It does make things more difficult for me and other caregivers. George becomes very restless and has conversation becomes very disjointed and I have to continuously tell him that I am not sure what he is talking about.

This morning I have found I need to be in the same room or he comes to me ready to go out. This morning I have given him his cup to clean - that is keeping him busy for a while.

I never tell him we are seeing someone or are going somewhere at a future time otherwise I may find him sitting in the car ready to go out.

Where am I?

There are times when I really wonder about just what George knows. There are times when I may say to him that tea is on the table, he gets up and is not sure where to go. I just quietly tell him 'over this way'. I use a lot of hand signals. I notice when he goes down the hall he checks in each doorway to find his room. It seems to be best to be in a smaller space rather then a bigger one but then he also needs the room for all his stuff, no win situation really. Patience is needed and I don't let him think anything is wrong even when I feel really frustrated. My life is easier if he doesn't feel frustrated.

I do feel so sorry for these people as their disease progresses. It must be really scary for them at times. George is pretty happy because he thinks everything he does is right.

Don't get me wrong as some days he knows exactly where everything is.

He often puts clothes on. I have given up trying to stop this behaviour. Some nights he will have on two pairs of long pants and three shirts. When the caregiver gets him ready for bed I spirit the extra clothes away. This tends to happen when I am trying to do something else.

Don't sweat the small stuff.

Downhill slide

It is becoming More and more obvious that George is going downhill. He often seems to bounce back a bit so we shall see.

Yesterday he went to his club and had a lovely day. It was a very hot day. Last night he did not have much of his tea. After tea he slumped in the chair. When it was time to go to bed he found it very difficult to get out of his chair. We had to help him up. He needed to use his walker to slowly be guided to the bedroom. He was totally confused and relieved to get into bed. Once there he enjoyed his wine and a movie.

We shall see what today brings.

Don't ask why

The other day, when we got home from George's club, I was tidying up and getting things ready for tea and the evening caregiver.

Suddenly I became aware that water was running somewhere. I went to investigate and found George in the bathroom. In the shower ( which he had turned on ) was his pull-ups, his trousers and his socks.
He was standing in the bathroom watching.

I turned off the shower, got the stuff off the shower floor and put into the rubbishy or washing machine. I cleaned him up and got him dressed.

We then sat and talked about some photos until he was ready to look through his books. Once settled I then finished off the tea.

I have learnt not to ask George what he is doing or why as he really has no idea.

By quizzing all you will do is make the person more confused or upset, best just to with it and move on.

Don't worry, be happy.

Achieving very little

This week I have had to change George's bed three times so far!!

One of the caregivers, I think, has poor eye sight so I have to go round after him as well, picking up clothes (and finding where he has dropped them). However George likes him which is important.

I do find that he gets very confused some days which makes life more difficult. Because I had to do things today which required being somewhere at a certain time (rather than work on his time) he just goes slower and slower and becomes more and more confused. He hates being hurried and I try not to do it although at times it is necessary. Really it takes me two or three times the amount of time as it does for other people. Today I asked him to sit at the table for tea - he wandered all over the place and did not know what I was talking about. In the end I had to take his hand and lead him to the table. Tomorrow he may be a bit better.

I find that the best way to deal with it is to lead him, gently, to where you want him to be.

Two other factors which may also be contributing to the confusion are:

• respite care coming up
• hot weather

The journey

Each person's journey is different which makes it especially difficult for caregivers as you are not sure what is coming next.

Strangely Mum and George's journey has been very similar.

George has been very confused this week. Often those with Alzheimer's can 'rally'. Mum did each time my sisters visited. George did last weekend with his son. This is great as it gives them all quality time. Afterwards they seem to 'go down' and become more confused for a time and they are also very tired. . I guess this is because while the visits are going on they are the centre of attention and they are going out and about a lot. By the end they are tired and it takes a while to recuperate from that and go back into routines. This is even when the visits are of short duration.

I can certainly see that had Mum not have had her fracture and landed in hospital for a month I would have been able to cope with her at home for a lot longer. So sad that so many health professionals are not understanding about dementia. If something similar happens to George I would also expect to see a similar deterioration.

The up and down world

I am so pleased that George was so lucid last weekend with his son.

Yesterday, after going to his club, George was not sure that he was in the 'right house'. Very confused and got more so during the day. This is a reality that caregivers face - things change very quickly

Great news, I have finalised with the insurance company about the earthquake damage (after 5 years) and so next year the repairs and renovations to our home will be done. With the renovations we are putting in new (disabled) bathroom, this is essential when a person is incontinent. Can't wait!!

Confusion

Poor George is often very confused. He will check in each doorway when he is looking for a specific room (in the flat), he will turn to go down the hall when he is on his way to the car (it is the other way). In the car he can sometimes do up his seat belt but at other times grasps the wrong part of the seat belt and jam it. Sometimes he can open the car at the end of a drive and other times he can't and I have to do it.

Every day George has Breakfast, morning tea, lunch, afternoon tea and finally his evening meal. He really likes his food. What I can't fathom is why he leaves a bit off each biscuit (and often parts of other things too). I have explained to him that he can eat the lot but he persists in this behaviour for no apparent reason.

I have learnt to go with the flow....

Birthday

Yesterday was my birthday. As other caregivers will know this doesn't mean much when you are looking after those with Alzheimer's. You always try to make their day special but it doesn't work the other way. George cut out pictures of beautiful women from magazines to give me. So sweet.

George had his club yesterday. On the way to the club I heard, on the radio, about Mt John station. The husband of one of my mother's friends was instrumental in setting this up so I started thinking about Mum and her friend.

I then had an appointment and while I was waiting picked up the paper and lo and behold on P3 was a big article about the husband of another of Mum's friends (now 90) who is giving advice to Nepal over building over there after their awful earthquakes.  I knew then Mum was with me.

Later that day I had coffee with a person who worked for Mum and Dad (it was also her birthday). I felt very much as though they were both there all day.

George continues to deteriorate but it fluctuates day by day; sometimes hour by hour. He can be very confused and an hour later be very lucid. As a caregiver you need to roll with the punches.

Importantance of caregivers

Unfortunately George's main caregiver was on annual leave for a fortnight.  So difficult. I found myself on the phone constantly trying to find out who was coming ( if anyone) and when they were coming. It took hours to sort out and there were times when they couldn't get staff. When a patient is incontinent the carers need to be coming every day, the risk of infection is high especially as he also has a catheter. I spent a day with George in the hospital with an infection. It is also incredibly confusing for George.

He is having more and more very confused days. There are times when he can't find his way around the flat and I have to show him where to go. Other times I need to show him where the table and his meal is. He then likes me to tell him what is on the plate.

Now the caregiver is back I am able to try to try to get some order back as well as trying to get things settled with EQC - very stressful.

Infections

When someone with Alzheimer's has an infection their confusion increases. Since Sunday this has been really noticeable with George.  I have noticed that before he has the antibiotics each day he will be really confused but soon after taking his medication he is really good. With George it is easy to see when he has an infection due to the catheter whereas with mum the confusion would become more noticeable and then the infection would be diagnosed. When the person is incontinent this becomes difficult to manage and it is really important to make sure that they are regularly changed and that everything is clean. Unfortunately in homes it is not always possible for everyone to be showered every day and so often they are only given a wash.

Birthday

George continues to go up and down. Some days he is difficult to deal with due to his confusion. He had his 81st birthday last weekend and I was able to make it enjoyable for him by taking him out which he loves. I made him a large canvas for his birthday with lots of photos on it. One of his friends, from Australia, rang and said to me afterwards that it was like talking to the old George.

Unfortunately we are now back to wearing the onesie back the front as he got out of it twice in the last week resulting in a bed change.

I have a lovely treat on Sunday night when my grandson came to stay for the night.

Sometimes life seem difficult and you feel very alone and when nothing you do or say is right.

Confusion

George is a lot less confused than he was at the weekend. Attention, a calm and soothing approach is definitely required as well as not trying to rush. This seems to be the same with all of them. I am certainly not saying that it will do anything but it does help keeping them in a warm accepting atmosphere where they can have a quality of life.

Took George to Harakeke but had to go back at lunch time as he pulls the Cather down resulting in great pain. I rearranged him and then he was OK.

I have to be honest he goes on about things where I actually have little or no idea what he means. I may say something like, I am not sure what you mean, but generally I nod wisely and say yes or smile or something of the sort. George is quite satisfied with that and has no idea I have no clue what he is talking about.

Stress

When George came home from respite care he was still extremely confused. Since then I have benn trying to keep things very calm and in routine. He does not cope with people rushing around and talking quickly and loudly, mum was the same. I have found that most of those with Alzheimer's are the same. It is better to agree with them and try to divert them rather than treat them as though they don't know what they are talking about or in a condescending manner. Nothing is more irritating to anyone let alone someone who is struggling to make sense of the world. Some people react to stress by aggressively loudly verbally attacking others. It is so unnecessary and achieves very little except making the aggressor feel 'in control', I find this extremely difficult to deal with let alone someone with Alzheimer's. A quiet reasoned soothing voice tone is required.

Today trying to keep this calm atmosphere and giving George lots of attention and the phone goes. Now you may have heard the saying, it never rains but it pours! It is true!

I got a phone call to say that a hacker from China had got into my bank account and was trying to transfer money out. Now I use three different banks for Mum and us. I then had to get on to each bank to stop anyone accessing all accounts and I also rang the police so they could try trace them. Phone calls took me over four hours. These automated desks are so useless.

Obviously a virus, I had been trying to clean mysmartsearch earlier - very nasty. I  had uninstalled the programme which had installed itself and I also had done a virus scan and cleaned the registry to no avail resulting in what happened this morning.

Stress, I felt very stressed. I had to be very careful and still give George attention and keep a calm gentle voice - I have certainly been doing this for over four years. Having no one else to listen to me I can't really do anything Anyway so there is no use worrying about it.

I have got my computer in being cleaned so all will end well I am pleased to say. Thank God I do know what I am doing, despite what anyone else may think, otherwise the outcome may not have been so good.

Result now is that I have got things sorted and George is a lot less confused than he was when he came home on Saturday. Just keep things calm, do things slowly and methodically and everything will turn out OK in the end,fingers crossed...

FaceTime

George is now on FaceTime with his son and is feeling happy. They are having a great chat so that is really nice.

 I am so pleased as it gives me a wee break but also I think he feels that every time he tries to do something today it turns to custard - just before he put a large bottle of sparkling lemon into the coffee jar and over a litre of red wine into the food processor. He doesn't know why he does these things but for some reason he thinks he is helping.

Different times of the day

Sometimes George will wake up and the bottom lip is slack. I have recognised that this means he will be confused. The caregivers have to be very patient with him at these times. When this happens he rarely improves during the day so I need to make allowances for this. I will often suggest he take a nap during the day.

Other days he will wake and be quite with it. During these times he likes to talk and have someone around with him. He also likes to go out for coffee or a milk shake. When we do this he expects to also have something to eat so this exercise can be quite expensive. During the day if he gets tired his bottom lip will gradually become slack. I find he needs to go to bed around 8. This means I start to get him ready about 7.30.

Something I intensely dislike is having to clean his rear end! Let me tell you it is not at all like doing it for a small child! I make sure I have plenty of baby wipes as well as nice soap for me and plastic gloves.

Very busy day

Yesterday it was very hot here and I had hoped to spend some time outside. Pigs might fly! I spent some time sorting out the people who go to see Mum, one had a migraine yesterday ( a frequent occurrence ) she had also made other plans for the day of her next visit as it is her birthday; the other wanted to change the day she visited Mum ( she also changed days late last year). All these things take time to organise.

George was pretty good first thing but he had three visitors - two nurses and a case manager. Each of these visits lasted well over an hour and necessitated both George and I being present. Each time they would also want to see how George could manage with doing things like walking.

After the last visit at about 4 p.m. we needed to get some groceries. After we got back home there was a noticeable change in George. He really had little idea of what was going on and his voice even changed. I felt that he was extremely tired so quickly got his tea ready and then got him into bed with a favourite DVD on. He was out like a light and much better this morning after a good sleep.