Tuesday, January 31, 2017

Assessment meeting

This morning I had a meeting with an assessor from PMH. She was very nice but whichever way you look at it, it does mean extra work for me. George was asleep in bed while she was there. She was thinking hospital level until she saw me try to do something for him and saw how he resists anyone doing anything and she said to me that she didn't think they would cope at hospital level. I don't either as they don't deal with dementia problems and this can be when they expect to give them medication to keep them calm. I would be really upset if they try to do this. She is therefore recommending he goes to hospital level dementia care which is the highest level of care.

There is another meeting in the morning to approve this assessment. I went to a home with a vacancy at this level but the room had just been taken. Tomorrow I am going to have to see what we can do.

George is very frail and does not sit or stand any more! This decline has been so quick. I feel so sorry for him but that is little help to him. At the moment I talk and sing to try to give him some quality of life (even though my singing is awful!).

One step at a time!

Monday, January 30, 2017

The next step

The doctor did his rounds early this morning and was busy when I arrived arrived. I went through to George.

After the doctor left the nurse came through to me.

The doctor has put in an urgent referral to PMH.

They are expecting him to be assessed at hospital level dementia. There are only two hospitals here catering at this level.

I will need to check these out as well as find out what happens if there is not a vacancy.

Very hot with strong winds here today. This has been playing havoc with my breathing so I going slowly but surely.

Got quite a bit done but it takes it out of me.

Time for a rest

I have just had a phone call and the assessment will be made tomorrow! Golly they move quickly when they want to.

I will have to see if I can get someone to help with the move. I will need a taxi to put the wheelchair. After I have got him in there I will need to take the wheelchair back to the other home. I need to pack up all his clothes, tv, cabinet personal goods etc. these will take me several trips to the car. Unfortunately the drive has been dug up for repairs. I will have to walk some distance with all the things. There is too much for one trip. I am not sure how many I will need to take. It means it is more difficult. At the othe end I need to unpack and settle him.

Everyone has just gone back to work this week so won't be able to help. It will take me most of the day. With my breathing at the moment it will be a difficult job, especially on my own.

Friday, January 27, 2017

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. 

Tuesday, January 24, 2017

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

Monday, January 23, 2017

Difficulties with diagnosis

George had a fall recently which I mentioned in an earlier post. The doctor has seen him several times to keep an eye on him. George does keep complaining of pain but the source of this pain changes every time you ask him. The doctor has been unable to work out exactly what is going on.

I had just got in the car today to go to see George when the phone rang. It was the nurse at the home. The ambulance was on its way to pick him up to take him to get x-Ray's.

Now we just need to wait and see. If he has broken or cracked a rib there is not a lot they can do.  Falls are a real problem. Luckily they often don't realise what is happening and so do not tense up meaning that they often do not hurt themselves.

This is where things can be so very hard as they often don't know and can't tell you what is wrong. Very difficult to know exactly what the problem is.

Sunday, January 22, 2017

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.

Friday, January 20, 2017

Sleepy

Today the carers have continued to have problems getting George out of bed however the managed it. He is drinking well but not eating much.

Sometimes I think it is like the seven dwarfs and I never know which one it will be. Today it was Sleepy.

When I arrived George was asleep in an armchair in his room. He was curled over and sound asleep. It took some time to wake him up. Throughout the time I was there he would wake for a short while and then go straight back to sleep. I always chatter about the family and friends. I asked him who I was. He knew I am his wife but I don't think he knew my name. As I chat about people I ask him who they are. Most of the time he is back asleep. Today I was chatting to him about Mark. I asked who Mark is. 'He's my eldest son' said George. Although fleeting a very lucid moment.

I think it is so important to try to keep these memories alive through video, photos and stories.

Thursday, January 19, 2017

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.

Tuesday, January 17, 2017

Listen to the family

Carers, and other family members who are actually there on the ground floor, are really the only people who actually know how best to care for someone who has Alzheimer's. If Those working in the Health Sector remember this it helps to ensure the best quality of life.

When George first went into the home he wore a onesie at night. We also put it on back the front. This was because George kept taking clothes off during the night. Sometimes he would put other clothes on. As he is incontinent he wears pull-ups. He would take these off. This could result in an awful mess. Using the back the front onesie stopped this as he couldn't open it. It worked really well.

In the home they told me that George didn't do this any more and asked me to buy him some pyjamas which I did. For some time all has been well, but guess what? He is now back to taking everything off at nights. This started again while he had Shingles and has continued. I didn't say anything figuring they would work it out. This morning I decided to suggest that to them. With his lack of appetite it hasn't been too bad for them but George is obviously going to keep doing this. Always amazes me how people really are not good as problem solvers. If they had listened to me in the first place the problem wouldn't have arisen.  I must be honest and say I did think 'better them than me'.

I think those of us who are the carers have to be fantastic problem solvers. You also need to think on your feet as you need to monitor everything all the time and change quickly if you need to.

Monday, January 16, 2017

Doctor visit

The doctor visited early this morning. He is concerned at how George has deteriorated since the Shingles and his reluctance to do anything (including getting out of bed). He is giving him some vitamins in order to try to help with the inertia. He is also having drinks of Complan to supplement his diet. Hope this does the trick.

Carers and those living with dementia often mention the isolation that happens, due to the situation, from friends and family. It is important, especially for family, to remember to keep these people in the loop, they are still part of your family.

Monday, January 9, 2017

Food and drink

Often it is difficult to ensure people with Alzheimer's do note stand drink properly. George has been having difficulty using cutlery for a couple of years now. He now only uses a spoon and needs to have food cut up. Unfortunately he often has difficulty getting food on the spoon. He makes moves as though that is what he is doing but no food is on the spoon. He then 'eats' that food and is quite sure he has eaten his tea/dinner. I have tried to feed him but this proves difficult to as he rolls his tongue so no food goes in - passive/aggressive? He is actually reluctant to eat and is now down to 66kgs. As he is 6 foot 2 inches this is certainly underweight.

I take him plenty of sweet things for him to have, for example chocolate milkshakes which he loves but he also needs a good balanced diet as well. He is also sleeping a lot.

Today, when I went, he was sound asleep. He heard me mention the Rugby museum to someone! His eyes opened and we were able to have quite a chat. He knew who I was but now has little memory of others. We are wondering if things at the moment are due to the Shingles which he has just over.

I have now moved into the flat which is now my permanent home. So far have just got the essentials and will gradually go through the rest of the stuff - there are five garages full. George has been a hoarder all his life plus stuff belonged to other family members. It is quite overwhelming if I think about it too much.

I am still having a nurse in every second day to change my leg dressing. The leg swells a lot each day but I guess I am not resting... It is healing well however and there has been no infection.