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.

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. 

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.

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.

Stagnating

I know that people with dementia need to keep having their brains stimulated. It is well known that when people are put into care that they go 'downhill'.  I have seen this happen.

A man, Roy, was diagnosed with early onset dementia. He lived at home with his family. He went to the same club with George. He was always talkative, enjoyed a good sense of humour and was enjoying life. He went into the same home as George at the same time however he was still classified as rest home level and not dementia. I saw him most days when I went in to see George. He knew who I was and always greeted me. He always had a twinkle in his eye. Now 5 months later, the light has gone out of his eyes, he is now in a dementia unit with George, knows no one and sits in chair and sleeps the day away. It is so sad. I have never seen anyone come in to visit or take him out.

George has remained at the same stage. Obviously carers cannot ensure that all the residents are engaging in activities to provide stimulation. By going in each day I ensure George engages in everything even when he doesn't want to, for example exercises. I do it with him and then he really enjoys it. I also talk to him so much about his life, his family and his friends. We also talk about what is happening in the world. George getting the one on one helps him, I did the same with Mum.  I always have chocolate or marshmallows which everyone shares. They all think I am there for them too.

I look at how well Kate Swaffer is living her life. Five months ago I would have said Roy was in a similar situation. Are we letting these people down? Do we need to concentrate on helping people live well and helping those around them to support them? 

As I have always said "quality of life"

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.

Frail

George is becoming more and more frail. His legs are very thin and do not look strong enough to hold him up.

On Friday we visited a friend and then went into town to the library in there.

On the way out of the library we went to the car and I turned around. George's legs buckled beneath him and he went down. Luckily it wasn't a fall but just went down. He was not hurt although he got a shock, as I did. A lovely man rushed over and the two of us got him up and into the car. On returning home George had a long sleep and felt much better when he woke up.

When he is going a distance he uses a walker but for shorter distance he uses a walking stick. The walker will need to be used more and more.

Juggling act

There are times when this place feels like Grand Central Railway Station. This week access is blocked to our homes while they concrete the guttering. It is a real pain as we need to park around the corner. I did this on Sunday but by the next day had lost my car keys, luckily I have the spare.

I am dealing (still) with the insurance company relating to the earthquakes (4 and a half years ago). This is so we can get on and do the repairs needed as well as some slight alterations. This will put in an en-suite bathroom for George. I will really be happy when that happens.

One day this week I had round: two caregivers, one health nurse, one builder and one electrician. Timing these things can be a nightmare. I have something similar today.

This week George has seemed to be more confused and it has taken the caregivers quite a lot of time to shower him. If you ask him about a part of his body he is likely to point to a very different part. I am well aware that when the repairs etc are being done George will need to go into a rest home and there is every likelihood that he may become institutionalized. All I can do is play it by air.

Learn new tricks

They say those with Alzheimer's don't learn new tricks. Well George did! At the meal table last night I got up to get something for him and then I see urine all over the dining room floor. Checked the valve on his catheter and the dear boy had opened it and emptied it all over the floor!

Very nice. I did not see him do it and nor did he know he had done it.

A bit more steam cleaning quickly done.

If this was a child you would explain the consequences of the action unfortunately that is rather a waste of time in this situation.

Just had a ring from my mother's home where she has been showing signs such as shallow breathing, high blood pressure, high blood sugar level. As Mum is generally pretty much the same this is unusual for her. They rang the doctor who is going round to see her today. This could be a stroke although at this stage they don't think so. I am just reorganising my day to get in there. Times like this become logistically difficult. I need to clone myself. At present they are keeping her comfortable and keeping her in bed. It is difficult because of course she can't tell them how she feels or anything.

Slowly getting there

George is definitely going downhill. Today I put some sandwiches on a table beside him but he didn't know where they were. He tries to pick up things which aren't there - these are hallucinations. He also gets food and drink all over himself. He is at a stage where he really can't do much for himself, not sure if this will continue or if he will improve, fingers crossed.

Got the car cleaned out!! Getting presents wrapped. George needs constantly being given food and drink - small regular amounts throughout the day (then the clean up) as well as the catheter being emptied regularly. He has to take these antibiotics four times a day on an empty stomach - the only time that really happens is first thing in the morning but I do my best... so far so good and there has been no further blood in the urine. We see the doctor again tomorrow.

Just found that George has poured his drink over the table and put jelly beans into the glass!!!???

Now to tidying up this place - and the weather is so nice outside!!!