ALZEIMERS - ANY RAY OF HOPE???

[BlaDeBla]

My mum was diagnosed a few years ago - at the age of about 62. I am finding it very hard to cope with and I think I am already grieving although she is not all that bad yet. My father is in denial so it is as yet impossible to get any outside help. I am finding this great sense of loss very strange since I have not yet actually lost a parent (quite).

Sorry to hear about your situation. It must be very difficult for you and your family.

My dad was diagnsed a few years ago following a mini-stroke (at 80) and the unit at the hospital that looks after him are wonderful. They have been a great help to my mother. He is still at the stage where he knows he is forgetting and asking constant questions. He has terrible mood swings. Some days he can go through every emotion. They have tried him on a number of tablets but nothing has really helped.

The hospital has been a lifeline for my mother and I would encourage you to contact them to see how they can help you and in time your dad.

I'm so sorry you're going through this, BladeBla. DH's mother had Alzheimers fairly early too, though not as young as your Mum...she was put on drugs that delayed the progression very effectively for a number of years. Is your Mum on medication?

DH found the Alzheimer Society very supportive and helpful in practical ways as well as emotional ones...you're so right, its a huge loss and one that is hard to grieve. DH felt the same, grieving in anticipation, but finding it hard and frustrating because he couldn't quite grieve normally, iyswim.

I would contact the AS and ask them for advice, they will have lots of experience of patients with partners in denial, and may have some useful suggestions.

Mum has been on some of the Alzeimers drugs and she says the memory clinic are pleased with the results. She has spent a lot of her life helping old people and I think she is finding it hard to come to terms with having a disease that normally affects older people.

I'm glad to hear that you're getting support from the hospital and your mum is getting help.

My father behaves as though he is the only person allowed to have any relationship with my mother and as such cuts his children out. It's very nasty being cut out by a disease, and cut out by an old nutter

Thank you so much for replying. It's pretty lonely.

How awful, the being cut out, I mean. No wonder you're grieving, thats a lot of loss here already

I've been in touch with the Alzeimers Society. They say that there is support available, but in order to access it you need to accept that there is a problem.

At the weekend we went to check on my parents' rented cottage to make sure it hadn't gone mouldy (really, neither of them is much good at cleaning). I could hardly bear to be there although it is where I spent a lot of very happy times with my grandparents.

So sorry to hear you are going through this. Alzheimers is such a horrific disease, and the worst thing is knowing that there is no cure. My mum has Alzheimers and Vascular dementia - she's 66. She was in complete denial for a few years and as she is young it was difficult to diagnose - the early symptoms can often be put down to depression or other illnesses. As a result, and because my sister and I both were "pregnant all the time" as my Dad put it, my parents kept it from me and my sister for quite a while and we both feel very cheated now that it is too late to talk about with Mum. We wish she had been more open so we could have talked about things and come to terms with it as a family. She has now been in a home for two and a half years and can't do anything for herself, can't communicate with us at all. I'm sorry to paint such a bleak picture but sufferers of early-onset dementia do tend to deteriorate more quickly than those who get it in their 80's. The Alzheimers Society were very helpful and sent me lots of info but I am very angry about the lack of support my Dad received from Social Services and Health professionals in general. Aricept helped my Mum enormously but I'm not sure if it is available anymore (too costly apparently . I agree the hardest thing is grieving for someone who isn't dead yet. Please try to get your Dad to open up, he probably needs your support as much as you need him.

Mum has been on Reminyl for over a year now. The thing about these drugs is that the disease overtakes their efficacy.

My dad is quite mad and trying to talk to him is like trying to communicate with someone from another planet. He has said that no-one must mention it to Mum, although Mum clearly has insight and I have spoken to her about what is happening. I know there is special support for Early Onset Alzeimers where they live, but that would be like being open about it.

My father was the same when I had terrible eating problems, telling everyone what was wrong with me, but not to talk to me about it.

I'm so sorry you are still going through this, and it is something that seems to generate a lot of anger.

My father won't let anyone else in the house to help to clean or cook and we have talked about it for years.

I agree about the drugs, they work during the early stages, and my Dad said that Aricept gave Mum a new lease of life for quite a while, but once you get past a certain stage they are not effective and there is very little that can be done. I'm so sorry that your Dad is so resistant. I'm glad that your Mum is aware of what is going on though and is able to talk to you about it - like I said mine was in complete denial so we never got the chance to say goodbye really. I hope that the Alzheimers society can give you some advice as to how you can support your mum, and perhaps your Dad in time will open up. On a purely practical side, your Dad will have a lot of things to sort out financially as and when the time comes that your Mum needs full-time care, all sorts of decisions to be made with regards to what is best for her and what financial aid is available. It is a minefield I can tell you!! I really hope I haven't made you feel worse , I wish you all the best

My dad had dementia when he was 64. It was a horrible illness and I totally understand what you mean about the grieving issue.

I found that I feel in love with my dad as a new person and when he did finally die (at age 72) I lost 2 people.

My mum hid the illness from us for a while, and it took her quite a while to come to terms with it herself, and my dad just wouldnt discuss it as he didn't want to know what was going to happen to him.

It was so much easier when my mum admitted she needed some help, and let me look after Dad sometimes, and got in touch with a carers associated which helped her out so much. They organised trips for her (as a carer) and supplied someone to look after dad if needed, although by then I tended to be the one to look after him if mum wanted to go out.

She refused to put my dad into care but did relent and put him in respite every so often - although felt so guilty about it that I am not sure it did her any good anyway.

It is a terrible illness so my thoughts are with you. Try to get your dad to open up and receive help from anyone it will definately help in the long run.

Thank you so much for your support. It's like living in Groundhog day when we see them.

Sadly (or perhaps not), we don't live nearby, but both my brothers do. The one who lives closest is completely mad and married to a paranoid lunatic who Mum can't stand. It is very sad that she often does not recognise my brother's children, but I think that is more to do with her anger than the disease. My parental family is very dysfunctional and my dad is known amongst the family for his violent and unpredictable temper which when he loses it, he beats up his wife or his children,and his controlling and bullying tactics, which if don't work, often result in a violent rage.

From a family POV, my mum's behaviour looks like she has simply spent too much time with my dad and is caving in: It's not that, and she has a disease which would probably have happened anyway.