I read on British Mummy Bloggers that there was to be a Mental Health blog carnival, and I remembered this article my sister wrote for Ciao, a review site. I would like to share this with you. As you can see it was written a few years ago at Christmastime...
I know that this is the season to be jolly but it isn’t always an option for everyone so I am going to bite the bullet and write what is possibly the most difficult review that I have ever written. I do not intend to go into any medical details here about what Alzheimer’s is and how is develops – suffice it to say that it is a degenerative brain disease for which there is no cure.
In July 2005 my wonderful dad finally lost his battle with Alzheimer’s disease at the age of 81. I am going to tell you how the disease affected him and what we did to help him. I am hoping that this might just help to make life a bit easier for someone else in the same position as we were.
My dad had always been an easy going sort of man – he needed to be living with my mom, my sister and myself! He was very slow to anger and almost never lost his temper. The first signs that something was wrong showed up when dad started to forget things. At first we all put it down to him getting older but it got worse. He went to see his GP who sent him to the local hospital for some tests.
When he went back to his GP he was told – you have Alzheimer’s disease take these tablets – and he was given Aricept. In the Midlands this is the only help he got! Aricept is supposed to slow down the development of the disease but as we don’t know how he would have been had he not taken it I can’t really comment on this.
He continued to get worse and it was difficult for mom to look after him on her own as by that time my sister and I had both left home and had our own houses. When he rewired an extension lead in such a way that when mom plugged it in she received a massive electric shock we knew that the time had come for change. By this time dad would have been in his late sixties and mom was 3 years younger.
Dave and I had always wanted to live by the sea so we decided to buy a big three storey Victorian house in Llandudno and we had the ground floor converted so that mom and dad could come and live with us. The house had been used as a guest house and we changed the downstairs dining room into an en suite bedroom so that mom and dad had their own lounge, dining room, kitchen and bedroom and Dave and I had the rest of the house, eventually converting one of the first floor bedrooms into a kitchen for us.
This meant that I was able to take over the financial running of the house so that mom and dad didn’t have to worry about bills. They did insist on paying rent so that they were paying their way! They also helped out with the modernisation of the house as they had the proceeds from their house in the Midlands.
As soon as we moved to Llandudno dad was assessed by the local community psychologist and he began to visit the local memory clinic one day a week, which was great for him and for us. At first I was a bit worried as I thought they would all just sit there doing nothing but he came home with stories of discussing items from the news, listening to music and doing exercises. The first week he went they were listening to a CD of Stanley Holloway monologues so he was well happy as this was one of his favourites!
At this time I became dad’s full time carer.
So every Monday dad would go off to his ‘club’ and mom and I would have a day off. Mom was also beginning to deteriorate at this stage as she had Vascular Dementia so I gradually took more stress off her. For example I took over all the tablets that they both had to take by this time. I dispensed them and reordered them so that was another worry taken away so that they could enjoy one another’s company more.
Initially dad wasn’t too bad and they were able to get out and about. They got their free bus passes and they were out most days. Funnily enough dad had always had a very good sense of direction and he never lost this.
When we were children we all used to enjoy doing jigsaws so we started this hobby again. Mom and dad’s dining room got to be known as the jigsaw room as there was always one on the table. The social worker said she thought it was a great idea and she said she would pass it on to others! It meant that there was always a way for me to distract dad when he was getting on mom’s nerves – she was never known for her patience with him! When she was cooking their lunch I would go down and sit with dad at the jigsaw and as that room adjoined the kitchen I could chat to mom as well. Dad could still help by peeling the vegetables but by this time he had to be told what to do and given the relevant tools for the job. I remember mom asking him to pour out a drink to have with their lunch – she meant fruit juice or squash – he poured out cooking oil, bless him!
As he got worse he started to go to the memory clinic for respite care for one week in every five which gave mom and me a break. The support that we got in Llandudno was really good, certainly much better than when we were in the Midlands! We were invited to the memory clinic every few months for a meeting to see if there was anything more that we needed help with and for them to tell us how dad was progressing as he was continually assessed when he was there. One thing we were told was that people with Alzheimer’s tend to have the same character traits that they have always had but that the disease magnifies them. We had seen people become quite violent with Alzheimer’s but luckily this didn’t happen with dad as he had always been so easy going he tended to stay that way – well most of the time anyway!
One of dad’s favourite things was when Dave took us all out for a drive in the mountains – he loved the scenery and this could calm him down if he was having a day when he was agitated.
Dad missed his garden and since we had a car park at the back of the house we fenced it off, had it paved and built some raised flower beds. Dad used to ‘help’ us and we grew runner beans and tomatoes which he loved doing. He used to go out every day with his sweeping brush and sweep the front path mainly because he could stop and chat to people as they walked past. He used to love doing this and I always used to make a fuss of how smart it looked.
As I said at first he and mom would go out for the day on the bus and have a walk somewhere but eventually it got the point that he couldn't even go on the bus into town without getting agitated. It eventually got to the point when we couldn't let him go out on his own as we would never know where he was so we had to lock the door - he wasn't happy about that! He did 'escape' once or twice and we had to split up and search the area for him. He could still manage a walk round the block to see the sea and one of us was always ready to go for a walk with him.
We were still doing our jigsaws but he did get to the point where, if the piece fitted, he would put it in. It didn't matter whether it went with the rest of the picture or not as long as it fitted! We used to wait until he wasn't looking and whip the wrong pieces back out again! Towards the end of his life he occasionally became quite cross with me when I had to stop him doing things, which was very unlike my dad. Luckily I could usually distinguish between the disease and the patient and not get too upset. Sadly mom couldn’t do this and used to shout at him when he got mixed up and when I reminded her he was ill she wouldn’t believe that he didn’t have control over what he said and did. I suppose that was her illness taking hold. Sometimes I had to intervene in arguments and calm dad down and then try and reason with mom. That was difficult and heartbreaking at times.
Dad continued to deteriorate. He could dress himself but he needed someone to tell him which order to put things on or he would end up with his vest on over his shirt for example. He occasionally had a little accident with his waterworks but generally he could remember to go to the toilet even though he needed someone to tell him where it was. There were one or two messy incidents in the bathroom but I won’t go into detail.
I found that the best thing to do was to reassure him and then forget the incident as he would forget it anyway! He got that he just couldn’t settle to do anything not even just sitting watching TV. He wandered around the house all the time so I just used to walk round with him and chat about things to try and keep him occupied.
He still wanted to help us with the work on the house and we tried to find little easy jobs that he could do. He had always done his own DIY and he thought he could still do things that he obviously couldn’t so he needed to be watched!
Dave and I got married in April of 2005 by which time dad could barely make sense when he tried to hold a conversation. My sister's then boyfriend walked me down the aisle and made the speech at the wedding on dad's behalf. The strange thing was that dad seemed almost normal on that day. He told me how lovely I looked in my wedding dress before we went to the church and he was winking at me from his seat as we signed the register at the front of the church. The people at the memory clinic had rung and told me beforehand that they would keep an emergency bed just in case it was all too much for him and he had to go in and at about 7.30pm he knew himself that he needed to be there. Dave took him in and he got excited wanting to tell them all about his day! Bless him.
Sadly whilst we were on honeymoon he fell and hit his head and was admitted to hospital. He remained there for three months and finally died there. It was heartbreaking to go and visit him. He couldn't eat properly and was surviving on special vitamin packed yoghurts and jellies, which I sometimes fed to him.
We took a little CD player in for him and he would listen to his favourite CD's as he still loved his music. All the nurses loved him and were all surprised each time they came on shift that he was still there as they expected him to pass away quite quickly, especially as he contracted pneumonia twice in hospital and twice he recovered from it! He couldn't talk to make sense at all by this time but we still got his trademark wink when we went to visit. During all this one day he suddenly turned to me and said 'How are you?' and I said 'Fine thanks dad - how are you?' and he told me he was OK and then he went back to being unintelligible. Weird!
I did have the chance to sit and talk to him one day on my own. I told him that I was so proud and happy that he was my dad and I couldn't have picked a better one if I had been able to choose for myself. I promised that I would look after mom for him and I told him how much I loved him. At least when the end finally came I was glad that I had been able to say my goodbyes. For the last week of his life he seemed to give up and he just lay there apparently waiting to die. He died in July of 2005 and I still miss him like crazy, but I am glad that he lived with us for the last years of his life as I did have some quality time with him even if he did make me want to scream sometimes.
So there you are then and yes this was one of the most difficult posts that I have ever written. If I have helped someone else in the same situation then it was worth it. If anyone has any questions I will be very happy to help if I can. I appreciated all the help that I could get and will be very happy to pass that on if I can. If you do know someone who is caring for an Alzheimer’s sufferer do be there for them. Don’t tell them to go away for a break or to get out and join clubs – they have to stay with their ‘patient’ – they can’t go off and leave them!
It was a most difficult time for me but I am so glad that I was able to do it. This post has ended up being very long – I do apologise and forgive you if you have skimmed it!
God bless you dad and thank you for all you did for me.
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