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.

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.

Kate Swaffer

Kate Swaffer has just been a keynote speaker at the NZ Alzheimer's conference in Wellington. 

As many of you will know Kate was diagnosed with Early onset dementia at 49 years of age. Since her diagnosis she has gone on to complete her Bachelors and Masters degrees and is now working on her doctorate. She certainly did not take her doctors advice and give up on life. 

Tonight she will find out if she has been named as the South Australian winner of the Australian of the Year for her work with dementia. Good luck Kate. 

I am interested in how diagnosis is now so early. Early this century my mother was concerned about her memory and talked to the doctor about it. He told her it was nothing. I have found that many doctors don't really want to know about Alzheimer's. 

She insisted on having an assessment at the hospital. My mother was a highly intelligent woman who always looked after her health. At the hospital they obviously gave her a cognitive test which she was easily able to achieve. They then told her she was in the top 25% for her age group. Of course this does not take into account on where she was a few years before that - no base line to compare to. Less than 8 years later she was diagnosed with Alzheimer's Moderate to Advanced. I later realised that she would have been in the early stages when she first went to the doctor. I have wondered if there was something they could have done at that stage or whether it was better to live a great quality of life for those years. I am not sure at this time what is better. I know that when we know more and have better drugs that early intervention will hold the key. 

You are still IT

Even when your loved one is in a home you are still IT.

Today the nurse at the home rang the doctor's surgery who then rang me. Upshot is I have to take him to the doctor's tomorrow. Of course that will write off the afternoon. George is still going to our doctor.

In the home Mum was going to the doctor associated with the home. Quite a few times I was asked to go in to see the doctor with Mum. You always need to be available for their needs it is not a case of putting them into care and then just going in once a week or once a fortnight. You frequently get calls regarding all sorts of things relating to them and that was even with me in and out of Mum's home like a jack in the box.

Medical profession

I have been thinking a lot lately about the knowledge and understanding of the medical profession with Alzheimer's. My mother was a very intelligent and articulate woman. About twelve years ago she started worrying about gaps in her memory as well as her perceptions of things. As she had done things like not knowing where she had left her keys we would laugh and remind her that she had done things like this all her life. Frankly I was not bothered and just thought it was part of normal old age however she went to the doctor who had her assessed at the hospital. They gave her things to do and talked to her and told her she was doing very well for a person her age, no brain scan was done. I thought no more of it but looking back she would have been in the early stages then. It is such a shame it was not picked up then when medication may have been beneficial. I feel quite guily that I did not take her concerns more seriously.

Later they used brain scans as well as verbal tests to diagnose Alzheimer's and other neurological diseases. Now, in and effort to save money the diagnosis has been passed to the GP. In my experience this is not going to help a lot as the majority of them are net well versed in this disease. Frequently I have  had to tell various doctors about things they don't appreciate about the well being of their patient. When I realised that George had it as well as Mum our own doctor was very reluctant to accept this and did not want him to be assessed. Luckily a locuum thought I was right and sent him for assessment. I fully realise that they cannot know it all and it is very difficult as these people all display different situations. It is so important that we have specialists who have a greater understanding to deal with this problem.

My mother has had two reasonably extended stays in hospital, both with disasterous consequences due to staff having very little understanding of how to deal with her and not listening to family members who tried very hard to help them with her care. I am not sure whether this was due to arrogance or their rigid rules or what.

Doctor visit

Had to take George back to the doctor today she has given him some more medication and taken a urine sample. His blood pressure is extremely low which would explain why he is tired and lethargic but she too, is unsure whether George will improve or whether he is indeed on a rapid downward path.

A nurse came in and changed his day bag. I felt very sorry for her as George had soiled his pants and it was all over the catheter. She cleaned him up and changed him for which I was truly grateful. One less thing for me to do!

Nurse

Saw the nurse at the doctor's surgery yesterday. A doctor also came and checked things out for me. They are contacting Nurse Maud for me. I did explain to them that I was not a nurse, never had been and never wished to be ( I always fainted when I was visiting in a hospital). They were wonderful and spent over an hour with me which was wonderful and they did not charge me! The were not impressed with the hospital - tell me something new!

Everything was going well at this stage - so far so good. Big problem with these things is infection. Over the weekend I bought piles of Dettol products. It is something I have tried to do is make sure things are clean - get in a mess with George pulling stuff out but try to keep things clean.

Busy week

After the good day on Monday George has been quite needy for the rest of the week. On Tuesday he had a 'dizzy spell' so I had to leave him home instead of going to Harakeke as I had another appointment. We had  a doctor's appointment later in the day so we are testing his blood to see if anything is wrong. 

Last night he managed to take the onesie off (two pins tonight!) resulting in him putting on and wetting 4 more pairs of trousers. Luckily the bed wasn't wet however my first task this morning was the washing. He got up at about 4 this morning. This is something that can be pretty hard to deal with.

Today I have taken him to go to see a friend for the morning. He loves to socialise...

Not too sure how things are...

This morning I had a doctor's appointment so while George's helper was here to give him a shower and get him dressed I went down. When I got home George was back in bed. He had been dizzy in the shower and was very slow with understanding etc. I have been keeping an eye on him all day - he got up about lunch time but keeps going to sleep and has been very white. Later in the day someone came round to see him and took him out for a while which was nice.

I have organised for George to go into a home for a few days respite care. While he is there I am going to the Coast to do some visiting in schools which will be lovely.

Doctor visit

Went to the doctor today who told George how much better his skin looked without as much alcohol. Unfortunately he has had a couple of slips but not too much, he has tried very hard. He is a lot less confused without it. Yesterday, while I was working, he went to Brighton on the bus and got himself a bottle of wine. By the time I got home he had drunk about 2/3 of the bottle. Last night he got himself a hot water bottle and filled it with black coffee!!! Luckily he did not soil himself as has happened at other times - fingers crossed that we can keep this up. He has memory clinic tomorrow morning which he enjoys.

Clarifying doctor visit

Reading my quick post yesterday I realised that I had not explained the doctor visit very clearly. The doctor had taken a blood test to check blood/sugar levels and things like that. While some of the results were higher than they should be the doctor felt that they would come down through George not drinking. He also feels that the toilet issues are due to alcohol and not Alzheimer's.

It all gets pretty degrading. 

Great news

The doctor was really thrilled with George for not having had a drink for 3 days. He said that it showed an improvement. He had got back the results from a blood test and told him that by continuing not to drink his levels should return to normal. That certainly would be a relief.

Memory clinic

Well believe it or not George has not had a drink since seeing the doctor on Monday. He is much better for it. He has been drinking coke and ginger beer. No more toilet issues thank God.

Today we went to the Memory Clinic which he really enjoys. When we got home he did tell me he had too much on his schedule! I wasn't sure what he was on about but he was worried as I can not take him one day and have organised for someone else to take him in so he was obviously concerned about that. At the moment he has been dressing himself as Mark is away. I noticed (when we got home) that he has his pyjamas on under his clothes...

Visit to the doctor

Well an interesting visit to the doctor today. He has given me pills to give to George when he starts the 'runs' again. He also explained to George that this will be caused through his drinking and that at the rate he is going it is going to be difficult to see just what is going to kill him first!! I wasn't sure if George got the message but I took him for a coffee after that and we talked about it. As he said the doctor had made things very clear.

I am going to get some adult naps to use at nights when this happens in the future. It will be interesting to see if George modifies his drinking and whether the doctor has given him a good scare.

Another doctor visit

Over the weekend I went to see mum. I took the cat in to see her as she had been telling me that the cat had died. She gets very concerned over the cat. However she had a pat on her knee and then lost interest. She was very placid and docile making me think that she had been given a pill but no it was just how she was at that time. You never really know what you are going to find until you get there.

Today George had Mark around to help him with showering and dressing which was good as we were going to the doctor for a flu shot and a B12 shot. When George dresses on his own he often puts his pyjamas back on and then other clothes on top - all sorts of odd combinations. I also took him to the local shopping centre to get a few things and we ran into a friend so went for a coffee - he loves doing this as he always gets himself a toasted egg and bacon sandwich while we are there.

Doctor visit

This morning I had to take George to the doctor at 10 a.m. Getting him up and ready was not the easiest - he slept in and he will not do anything in a hurry!! Finally got him there with the promise that I would take to a cafe for a coffee and toasted sandwich afterwards. The doctor mentioned that he thought that I would be entitled to respite care so I am ringing up the appropriate people to find out about that. George enjoyed going to the cafe and enjoyed an egg and bacon toasted sandwich.

George kindly fed the cat - the only thing was that he put the cat's meat into the full water bowl (the cat has dried cat biscuits) result - a big bowl of cat biscuits in the rubbish bin...

When we came home today I asked George to bring in the yellow (recycling bin) from the street. 'why' said George 'I haven't taken it out yet'. I then had to explain to him that it was taken out yesterday and had been emptied and now needed to be brought back in.