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.

Living in the past

Today, when I went in to see George he was sitting at the table just about to start his lunch. I said 'Hi, how are you today?'. For the first time he said 'who are you?'. During the entire time I was with him he had no idea who I was. He said that he was expecting someone to come to see him as he had just arrived in Christchurch from Invercargill. He had driven up. This actually happened in 1960. However at the time he was married with a young son. He did not have any knowledge of those slight details. He was excited about his new job at the Press newspaper. He asked my name so I said 'Diane'. He said that I must be a nice person. I then thought and said 'Kewpie' which is what he has always called me. 'That's a strange name' was the reply. He mentioned he had a 'best friend'. I said 'Ron'. He was thrilled, 'you know him too'. After I replied in the affirmative we had an animated discussion about Ron, mainly him doing the talking. At various times I called him JK and Glassy. He was thrilled and recognised his own nicknames. He wondered he had called him Glassy. I told him I thought it was Scott. He wasn't sure who Scott was but thought he was a little boy. He really appreciated me helping him getting his lunch on his spoon making it easier to eat. All in all things went pretty well I guess. As usual George was the perfect gentleman. At no time did I try to tell him who I was, he was so happy just being in that time frame.

Many people in this situation just say, 'oh he/she doesn't recognise me any more' and use this as an excuse not to visit. I don't agree at all. We just went with it as though his reality was reality. He was happy as Larry to discuss all that was happening. He was happy in the moment and that is what it is all about, Having the best quality of life we can give them. Go with the flow.

Be interesting to see what decade we are in tomorrow. 

Brain stimulation

Another blogger, Paul, regularly uses YouTube songs to help caring for his wife. He finds the songs soothing for his wife and the two of them sing and dance with the songs. Just lovely.

Within the last week a small clip was on a regular TV programme here. They present it as something  remarkable a rest home here stumbled on by accident. They promote it as being cheap,
and cheerful and reveals glimpses of loved ones long gone. They say "it is almost magic.

After watching this I have decided to set up George's room with lights and music. I have downloaded a whole lot of videos from YouTube which show Xmas lights and houses which are set to music. I am putting these all together to make one DVD to play in his room. 

I have also been buying cheap lights (made for Xmas) which operate on batteries. For example I got a small tree today which changes colour and is about 20 cm high. I am going to get a lava lamp to go in there and look for some solar lights. 

I can see that this would certainly stimulate the brain and these things can easily be turned on and off as needed. 

It is so great how we all share these ideas and see if they work for us. 

What a difference a day makes

As I have been driving around I have been looking at all the cabbage trees which are in flower. According to Maori when the cabbage trees flower early we are in for a long hot summer. I was looking and thinking about a wonderful summer ahead.

I just love these trees and we have several of them on our property. Unfortunately they are a pain to have as they shed their dried leaves and these need to be picked up and put into the rubbish otherwise they get caught in you mower and wreck havoc with them. The leaves can't be composted.

On Sunday a reasonably tranquil day, George loves seeing me each day and some of our friends also called in to see him.

At midnight that night

a 7.5 earthquake struck

I was in bed and was woken up. This earthquake was different from the others we experienced over the last six years. There was no noise and it just rolled back and forth for what seemed and eternity. I was on the first floor. The house

was creaking - due to the earlier damage. I lay thinking "should I stay here or should I go outside". I thought that if I went outside and the house came down I would be underneath it while if I stayed where I was and it came down I would be on top of the rubble. Totally irrational thoughts I know.

We were evacuated until after 8 the next day. I was dressed in a onesie and on my own in the car, not pleasant.

The main damage was in Kaikoura which has been cut off due to road damage. We are all thinking of them and trying to provide the appropriate help for them.

I went straight to George yesterday morning and watched the news about the earthquake with him. He had felt the earthquake but was not worried which was a relief.

I am off to see him soon and then attending a meeting with other carers and the home personnel.

There are certainly a lot of times when it is difficult to be dealing with everything by yourself.

I am hopeful that one day life will continue gently and without incident.

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"

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.