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

So hard

There are times, when no matter how up beat you try to be, it really is very difficult to accept how bad things are.

George was in someone else's room and rummaging through their drawers. A carer found him when he fell over. He seems to be OK but they are keeping a close eye on him.

Because of his difficulties with food he is now having his food mashed up to make it easier for him.

He is becoming very reluctant to get out of bed. This started with the Shingles. Today he went back to bed and clutched the blanket. Three carers tried to get him up.  He tends to curl into a foetal position, gets very tense and becomes a dead weight. Very passive/aggressive!

 He does have a vice like grip when he wants to. The poor doctor today  was checking him out. George reached out and knocked his glasses off. It was extremely difficult for us to get them off him without breaking them.

I told him he would need to be up soon to have a red wine with tea. He did perk up then so fingers crossed.

It really is soul destroying at this time watching this disease progress.

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.

Kewpie has returned

Today when I went in to see George I greeted him by saying 'hi darling how are you today?'. He said he was fine. I then asked him who I was. Straight away he said 'Kewpie'. It was nice she had returned. Today we were in the 21st century.

George told me he had been round to visit me but I wasn't home. I said that it must have been when I was coming to see him so we must have crossed paths. 'what a coincidence' he said! He certainly feels that he leads an active life....

During the time I was helping him with his lunch I saw he was in pain. It is to do with the catheter he has. I do find that it is important that I keep monitoring him and constantly insisting that the carers do to to ensure that George is not in pain.

Where does the time go?

I don't have the answer to that question.

I thought that I would have more time now but it is not working out that way.

I go to see George most days and it is good if I am there for some of the lunch time. This is when the major meal of the day is served. George can no longer use cutlery properly. I ensure that all his vegetables are cut up, the carers do cut up the meat but he needs everything cut up so it is left. I also need to tell him how much he likes the various meals, then he will eat the meal quite happily. Unfortunately the carers can't do all that one on one for each person so often many do not eat enough.

George's home caters for rest home level and dementia but not hospital level care. A fall often results in a stay in hospital followed by a move to another home catering for hospital level care. It is something I need to think about for the future.

Last weekend George's youngest son visited for a couple of hours on the Sunday. He had not seen George for over 18 months. George was having a good day as he had slept in that morning. They had a good time looking at old movies about the family.

This weekend his eldest son is visiting for a few days which is great. With the two of us we can take him out. With his poor mobility it is easier with two of us and the risk of a fall is reduced.

The following weekend I am going away to visit my grandchildren. They have missed out on my visits and it is important that I get to see them. We are in contact via Instagram and regular phone calls but it is not the same.

So hard when you are pulled in so many directions. It is especially hard when families live so far apart.

A spring in the step

George has been very good over the last week and we have had lots of conversations about his son's visit. He also keeps asking when he is coming back as he obviously remembers that he is coming. He is quite happy when I tell him it is isn't for a little while and I will tell him when.

Today when I went in he was dozing in a chair and although he woke up straight away he was not very 'with it'. He needed a shave and when I gave him the shaver he just dropped it down. I shaved him with lots of moaning and groaning going on, however we got there. He did enjoy his milkshake. I also take in large bottles of drink for him, just as I did with Mum. His language was often jumbled and not very coherent. Getting him to the table for lunch was a mission.

I was feeling pretty down when I left the home. On the way home I stopped to get petrol. Here oldies get 8 cents a litre off when they use their Gold Card. When I went to pay the bill the young man serving (in his twenties) looked at the card, looked at me and looked at the card and looked at me. After doing this a few times I asked if there was something wrong. He said 'well you can't have had this card long'. I did not tell him he needed to go to Specsavers and  left that garage with a spring in my step!

I have been laughing as I have been reading some of Paul's blog. He has said how he feels at the patronizing way some people speak to him. I feel exactly the same way! So do the people with Alzheimer's. I hear people saying that looking after those with dementia is like looking after a child! WRONG. Talking to them as though they are a child is the best way to get their backs up. Mum used to get so upset and would often ask me to explain to others that she was intelligent and knew what she was talking about (even when she didn't). You need to take what they say with dignity and respect and accept that this is their reality and talk to them as though that is exactly what it is.

From: https://nz.pinterest.com/kathielangford/nursing-homes/ 

Wedding anniversary

Today was our thirtieth wedding anniversary!

I took in two chocolate sponges for everyone to have for morning and afternoon tea today.

George and I sat going through his books and talking about all sorts of things that have happened over the years. George was having a good day and enjoying reading his books, talking and eating chocolate.

Another resident had received mail which he couldn't open. It had come to him from his son in Australia and was delivered to the home. I said I would help, so with a group of seven onlookers we started. I used a key as a letter opener which they all thought worked well. When it was opened I pulled it out a little way so he could pull it out himself. He wasn't sure what it was so I read all the card to him - with the others listening avidly. There were also three photos (luckily with names on the back) so we talked about those and I wrote his name on them so they don't go missing. All up that was a half hour with all those people really involved and joining in. They were all relaxed and so happy.

While we were doing this the caregivers were getting the lunch ready. Hopefully they try using some of my techniques - I always try to model how the carers should be, same as I did with aspiring teachers.

Passing problems along

The comments Amazing Susan made on my last post reminded me that I had not shared my own thoughts about how we sometimes deal with those of us with difficult behaviours.

I was a teacher for many years. During this time I regularly stood up for those children that other teachers wanted to be 'stood down'. In the old days this was called expelling a child from a school. My attitude always was that the failure was the schools and that we needed to have strategies to deal with these children. All that you do is give the problem to another school! I could never see how anyone could think was beneficial to a child. While I was there no child was 'stood down'.

Some time ago I knew of a case where a person was in a home. She had early onset Alzheimer's and was very strong. She frequently lashed out and many caregivers were frightened of her. One day a family member came in just as this woman hit the family member's mother. A formal complaint was made - result. The woman was taken away for reassessment and moved to another home. Exactly the same as in the education system, pass the problem on for someone else to deal with.

I spoke to a senior staff member about the minister and said about how our education system deals with the problems and that I hoped that they were going to look at how they had failed rather than blame him - this was my way of dealing with these things in our school.

I am now watching this space...

Aggressive behaviour

In the Home with George are several men as well as women. Two of the men are pretty big. One of these men was in the American navy and speaks with an American accent although he is actually a kiwi. He walks with a walker.

The other man does not have mobility problems. Previously he was a minister in an Anglican Church. He wanders around a lot saying 'Jesus loves you' over and over. Unfortunately he tends to bother women and will often hit them.

Two days ago I saw the navy man had a black eye. I asked him if he had had a fall. He told me no he had been in a fight and I should see the other guy who is now in hospital!

Apparently the minister was hitting a woman. The navy man went over and told him not to hit a woman. The minister turned around and faced up to the navy man. They then got into a fight.

Result: navy man - one black eye, minister - fell and broke his hip.

It is very difficult for caregivers to cope with this sort of happening especially when there may only be one of them on duty.

Thank goodness George was not there. He is not used to aggressive behaviour and would have been shocked had he been there.

A poem for all of us

This is one of those poems that all caregivers need to read frequently

Do not ask me to remember

Do not try to make me understand

Let me rest and know you're with me

Kiss my cheek and hold my hand

I'm confused beyond your concept

I am sad and sick and lost

All I know is that I need you to be with me at all cost

Do not lose your patience with me

Do not scold or curse my cry

I can't help the way I'm acting

Can't be different though I try

Just remember that I need you

That the best of me is gone

Please don't fail to stand beside me 

Love me till my life is done