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I lost my father just over six months ago to this illness-although it had huge impacts on my family for six years before he died.
My father was a hugely intelligent man, who was high up in the teaching profession until he decided to take early retirement. The doctors said that the cause of him getting dementia was such a large change in his daily routine.
Up until he was diagnosed he was healthy and active. Dementia gradually affected his memory, until it got to that stage that he couldn't remember who his own family were. He lost his speech and was constantly having mini strokes and getting bed sores.
Dementia has devastated my family, and left my father doing things he would never normally do, and not caring what he said to people. It got to the stage where he couldn't walk, dress himself or even go to the toilet on his own. While at first he was aware of things which he had done many years ago, anything which had happened in the last couple of years was forgotten.
Seeing him bed-ridden and helpless, I knew that my father could be taken from me at any moment. While it seems cruel for me to say, the illness made him so bad that I desperately hoped that he would be taken-he had suffered enough.
It started off with my dadn forgetting small things-none of us knew that his death due to the illness would be the final chapter. If someone is struggling-don't laugh, they may need help like my father did. Apparently scientists think they may have a cure for the disease-but it needs to be caught early on.
My grandmother is currently suffering from this disease and it has had a tremendous imapct on my family.
It started a few years a go, it was mainly just confusion which we thought was part of old age. It then began to grew and I first noticed it for what it was when my grandma was adament that my cousins in London weren't her grandchildren and that my grandfather (who had passed away) was her father.
I knew that it was likely to be Alzheimer's but wasn't aware of how severe. It wasn't until a few months later, when I was 12,000 miles away from home, that I found out the diagnosis from my mum.
At first I was angered that I hadn't been told sooner, apparently the family knew before I left for my trip overseas but they didn't want me to worry or change my plans, so I was left to find out via MSN messenger of all things and as I had no family with me I found dealing with it very hard. After all I was twenty at the time and still getting over the loss of my grandfather.
Throughout the weeks that followed I couldn't stop thinking about my grandma, I called her from Australia (she lived in Durham) and she seemed no different on the phone and I sent her a letter that acted as a goodbye as I knew when I got back she wouldn't be the same.
By the time my trip ended my grandma was living in a care home, she had been living in her own house during the start of her illness but had been going out at night in her nightdress and the police were picking her up at various points in the city and it became too dangerous for her to live at home.
I found the first visit to the care home nerve wracking, after all I had only been speaking to her on the phone and didn't know what to expect.
The nurses were friendly though and I went with my mum, she had to be reminded who I was though which was a little hard to take.
She's still living at the home now, health wise she's fine, it's just her mind that's gone. She no longer recognises me as her granddaughter but I always let her know that she's still loved whether she know's who I am or not. I think the hardest part though is seeing the effect on my mum, she lost her dad to lung cancer after a several year long fight and now her mum has also gone in a sense too.
We will continue to visit her though and she gets plenty of other visitors and the nurses are taking good care of her, so I intend to spend as much time as I can with her before the Inevitable happens.
Thanks for reading...
I have written a review recently about how I coped as a full time carer with my father's Alzheimer's disease. When dad died mom was officially diagnosed with vascular dementia and I became her full time carer instead.
I thought that I would write a review giving my story and hopefully offering some advice to others in the same situation.
To give you a bit of background information mom was rushed into hospital in the early 1990's with a pulse of over 180 and after investigation they found that she had some damage to her heart which had been caused when she was a young girl and was exposed to rheumatic fever which killed her younger brother. She was given medication and was fine after that.
As she got older she began to have problems with short term memory loss and she was diagnosed with vascular dementia which is dementia caused by problems with the heart. The impaired blood supply to the brain means that the dementia develops.
As with Alzheimer's disease, dementia has no cure but the patient can be helped by eating a healthy diet, doing some sort of exercise, drinking alcohol in moderation, not smoking and keeping the brain as active as possible.
In mom's case she was looking after dad who had Alzheimer's disease as she started to develop her symptoms. It was then that we all moved here to Llandudno.
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. This helped mom a lot as, when they loved in the Midlands, she had always dealt with the running of the house, paying bills etc. and now she could be free of that and concentrate on spending time with dad.
At this time I became dad's full time carer and I continued to gradually take more stress from mom trying to do so without making her feel as though she was useless herself. For example mom was getting mixed up and stressed over their tablet regime so 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.
We watched dad deteriorate from being fairly active and able within the parameters of the disease to being unable to communicate properly or to leave the house on his own. During this time mom was also slowly deteriorating.
When dad finally died in July 2005 mom was initially still active and fairly independent. She could get into town and walk round the shops on her own.
However vascular dementia is a type of dementia which deteriorates in stepped stages rather than in a constant slow decline. When a significant event occurs the patient deteriorates rapidly and then this will even off into a plateau stage until the next event occurs. This is a very simplistic description but it gives you the idea of how the disease generally affects people.
Mom eventually began to go to the local memory clinic one day per week to give us both a break and when she deteriorated more she began to go for respite care for one week in every five which gave mom and me a break.
As mom deteriorated she wanted me to keep her company all the while which I must admit got very stressful at times as I have always valued my own independence. Luckily we both like the same sort of things so I would watch TV with her, do a bit of gardening, do jigsaws and we used to go out for a walk together. She eventually needed a wheelchair so I would take her for long rides in the chair when the weather was good. The exercise did me good so we were both reaping the benefits.
When dad originally died mom seemed to cope very well although she did occasionally ask where he was and I had to keep explaining to her that he had died which was very distressing for us both.
She then had a rapid period of deterioration and this was when she became less mobile and needed her wheelchair but the worst thing that happened was that she began to disbelieve what I was telling her. She would ask me where my dad was and I would try to explain but she would insist that she had seen him in the street with another woman looking 'smug' and she would get very nasty with me when I tried to correct her.
My dad was the sort of man who would never have gone off with anyone else even if he had wanted to. He thought the world of mom, my sister and me and we were all he really wanted in life so to hear such awful accusations would really hurt me. Dave would tell me to let it drop and just agree with her to keep the peace but I just couldn't, partly because it hurt me to hear such lies about my dad and partly because mom was upset and I wanted to help her to understand and feel better - but of course I couldn't as she was too ill to understand.
She also kept telling me that she was going to visit her mom - who had actually died in 1981 - and that she was going home to Walsall and even better that she was going to walk it!
Arguments like these got more and more frequent until I had to admit that I was no longer the best carer for my mom and that she needed to go into a nursing home.
What I wanted to do was to get mom in as a day care patient for one day a week to get her used to the place. I had no intention of just dumping her somewhere strange and letting her get on with it. I loved her far too much for that.
I found a suitable home with the help of my social worker (I have done a review about the choosing process) and mom started going to the home every Friday in November 2007 and she was put on the waiting list for a room.
She enjoyed her day out each week and quickly made friends with another lady who was at the same sort of level as mom if you see what I mean.
On New Year's Eve 2007 I received a phone call saying that a room had become available that would suit mom.
We took her to see it the following week and she was happy enough so the wheels were put in motion. I was a nervous wreck during this period as I wanted everything to be perfect but, as my sister pointed out, things weren't perfect at home were they so why should I expect perfection in the home?
Mom finally moved in on 25th January 2008 and settled very well. She did ask us at first when she was coming home but she soon got over that.
The financing was sorted out for us and we were advised of how much we needed to pay each week.
Mom enjoyed being with her new friend and was always happy to see us each week when we went to fetch her for a day out. The members of staff were always kind and thoughtful to the visitors as well as the residents. Mom always told us that they couldn't do enough for them and were always kindness itself.
Sadly she developed a chest infection at the end of March 2008, which was nothing unusual for her as she often suffered in this way. She came out with us on the Saturday (29th March) as usual although she wasn't as lively as normal.
The following day someone from the home phoned to say that the doctor had been to see mom and prescribed antibiotics and steroids. They said that she was up and about and chatting to her friend so there was nothing to worry about.
On the following Wednesday the nurse from the home rang to say that she had been taken to hospital to get some oxygen but that she seemed ok apart from being breathless and not to worry. Later that morning the hospital rang to say get here as quickly as you can and mom died at about 6pm. She always said she wanted to go quickly so I thank God for that.
Sadly for me even though the home was such a lovely place I still feel guilty that I didn't continue to care for her myself, I feel as though I let her down at the end. Still I have to live with that and come to terms with it in my own time.
So there you are then and yes this was another very difficult review to write, but 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.
This review has ended up being very long - I do apologise and forgive you if you have skimmed it!
God bless you mom and I'm sorry I couldn't look after you until the end.