Problems continually arise

I was born in the Year of the Oxen and my birth sign is Taurus. I am very stubborn. George was not born under either of these signs but boy is he stubborn too. He has always followed the beat of his own drum and just done the things he wants to do when he wants to it.  He has never argued about he just does it and finally others fall in with him. One of his sons told me that the only things George has ever been on time for was trains and planes as they won't wait!

He appears very fearful of standing or walking. He doesn't sit up himself.  He curls up and makes it very hard for people caring for him. It is taking four of them to get him out of bed. What we are all trying to do is just encourage him to try to stand. He is often most in willing to try and will become very agitated. It is so hard to understand just what has brought this on and whether we are going to be able to get him mobile.

Another worrying pattern which is emerging is his reluctance to eat his meals. Yesterday he would not feed himself. I tried to feed him but he puts his tongue over so no food will go in. I tried to persevere but he got more and more distressed and was almost in tears.he tried to tell me that the food was for the poor children in India. In the end I had to give up as he was becoming distressed.

It is a real worry. If he continues to need four people to manage him he will be reassessed at hospital level care.

Here we have

1. Rest home level - normal and able to move about freely
2. Hospital level - mobility issues or other physical problems
3. Dementia level - secure level
4. Advanced dementia level - secure unit with a high staff level to cope with the extra dementia problems

Our Hospital Board assess all of the residents for the homes. The different homes cater for different levels. If George is reassessed at hospital level I will have to find another home catering for that level.  There are also the problems associated with moving and settling into a new environment. I am extremely worried about all this as it is obviously looming. 

I try so hard to ensure that George has the best quality of life possible but sometimes it is hard to know how to do this. 

lack of mobility

Any actually breaks or damage have been completely ruled out with George which is great news. However we need to get him standing and moving so he does not loose the ability to walk. A urine test has been taken to see if he has an infection leading to his confusion.

Just getting him to stand up is a mission and is taking the four caregivers. He appears to have lost the confidence to stand up. We are not sure of the cause. It could be due to the isolation when he stayed in his room, it could be after the fall or it could be the progression of his dementia.

When anyone tries to get him to stand he curls into a foetal position and you can't get him to straighten to stand up. He tenses up and stays rigid in this position. It is as though he is very scared.

Today I said to him about eating drinking and going for wee walk. He looked at sorrowly and said 'I can't walk'. Unfortunately this was about his only lucid moment today.

This is like a child with Maths, if they think they can't do it they get a block and find it difficult.

Today I talked to the nurse and suggested that when any of the caregivers had a spare 5 minutes that they try to get John to stand. I will do the same thing. We won't walk but just become confident with standing. We can then, hopefully build up from there.i

Adventure on Fantasy Island

Well, although we were awake today, we had a very different reality.

It had taken four caregivers to help get him up this morning. A major problem is he becomes a deadweight and is also unable to help.

Since he was in isolation with the shingles he prefers to stay in his room all day. I am not sure that leaving them in their room all day like that is helpful. I understand the reasons but it was for 2 to 3 weeks. George got quite used to it and is content, at present, to stay there on his own and have people coming in and out.

It is hard to get him walking let alone to the lounge. I have explained to him that if anyone comes to visit him that we will not be able to take him out as we have done in the past. He has promised to practise but no luck today as he was sure he had a sore back.  Let's hope for some improvement.

When I talked about going to the lounge he told me 4 people  jumped on him and started to hit him. Later I asked him who I was. He told me I was a conspirator... I told him I have never jumped on him and hit me and he then said no it was his four wives! Talk about a vivid imagination but at least he was happy.

6 month review

Over here, Down Under, caregivers have a 6 monthly review with the RN at the home. 

I had my first one for George yesterday. It is well known that many people deteriorate when they go into a home. This did not happen with Mum and nor is it happening with George. The RN and I think that is probably due to the constant visits that George has from me. Mum too, had visitors every day. While obviously this does not mean that the disease won't progress it seems to go at a slower rate.  George's mobility continues to be a problem, depending on the day however he hasn't had a fall for a long time. His skin is very fragile and will bruise or bleed just by bumping against something. There are days where he really won't stand and walk around and others where he is fine although always slow... 

The home will not give any pill or drops etc without the say so of the Doctor. I am getting Arnica and Rescue Remedy so the doctor can chart these so George can be given these as required. 

George eats well when he is having a good day but on a not so good day he just moves the food around. This has been going on for about a year. The RN feels that the milkshakes I take in contribute to George not losing weight which is good. 

This is so similar to Mum. As I am in and out all the time I know what is going on so there are no surprises. 

Good that we are keeping the status quo at this stage.

Going out

George has been going downhill since going into the home. His mobility is really going downhill. Many days they use a wheelchair to take him to the lounge, a very short distance. When he first went into the home he was using a walking stick. Now he needs a walker and sometimes even that is not an option. This has made going out not possible. I am hoping that things improve. He is very frail. 

He still has a certain amount of short term memory and remembered some friends seeing him yesterday. I go in every day and take in plenty of drinks such as Cranbeery juice, lemonade and ginger beer. Most days I also take him a milk shake - just like I did with Mum.

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!

Settling in

George is settling well into the home. He is very much up and down. On Sunday he was really down. His mouth was slack and he was asleep most of the day. As he has vascular dementia as well when he is like this I wonder if it is a mini stroke. Then the next day he was a lot better and very with it. He improved even more and now he is walking better as well as being far more aware of what is going on. I have spoken to staff and have taken some red wine so he can have a glass when he goes to bed at night. He is thrilled about that.

Something I am noticing very much is that I am only now starting to grieve. When Dad died my focus was on keeping Mum going so she didn't feel alone. I know I succeeded as she told me. She then moved next door so I kept everything going on an even keel for her and George. Then I had Mum in the home, George as well as the earthquakes to deal with. Now for the first time I need to look after me. I guess it is the first time I have had the time to grieve. It is so much to grieve for - Mum, Dad, George as well as the earthquake losses. It can be quite overwhelming. I knew it would happen but I had thought I was handling things well.

It all happens at once

the last few weeks have been so busy, now I have time to catch up on a few things.

George stayed in the rest home after his respite care. He is well looked after there and is happy. When this happened his son, from Sydney, came over and the three of us spent three great days going out together. George just loved it and continued to talk about his visit for some time after the visit. He was a great help to me to sorting out some of George's papers for me. It is a visit George's son will also treasure.

I have been visiting most days. Sometimes it is only a short visit other days we go out for coffee and he enjoys a toasted sandwich. Some days he is very confused and has no idea who anyone is or what is going on, other days we look at his books and he talks a lot about things he did. He is getting very fragile and I am not sure how much longer I can take him out. We would be in a lot of trouble if he falls.

The flat is packed into boxes and is stored in our old house and garages. I have set up a bed sitting room in our old house. It is nice and warm which is important. Also I can check on the builders.

I allowed someone to live in the old house rent free for a year and I must say he was very reluctant to leave. Prior to that I allowed another couple to occupy it rent free for two years. Of course I had to pay rent and the property owners costs for the flat. That helped to pay Mum's fees in the home. I am now having to pay for George. Since the earthquakes I have been caught between rocks and hard places. Of course all of this has seriously eaten into my investments.

Little things

Something that most people would not realise are all the little things that a career needs to do and to think about including cleaning a razor - I had never taken one apart to clean but I think I am now pretty good at it. Another thing I need to do is to cut his finger and toe nails. George no longer copes with lots of things like this which I have to do. Luckily he has someone coming five days a week for a showere and to dress him but I undress him each day and put his onesie on which is not the easiest task in the world and takes me some time. Obviously I dress him two mornings a week.

Services

We had a physio here yesterday to look at the home environment to see if she could ensure safety and independence for George. She was quite impressed with what is here in terms of rails etc. She did suggest a walking frame to George but he was horrified and really he is nowhere near that point. She is sending him out a walking stick. She also had him stand up in various poses. She is sending out sometime who is going to show George a series of exercises to do to keep himself mobile. Guess who will have to ensure that he does the exercises daily?