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Comments from the community :

Faye, yes, yes, yes to everything you've said here. I have all the emotions you do but in me, with the diagnosis being three years old, now they are controlled emotions. Maybe because I had already been a carer for seven years because of Ray's physical disabilities I was used to the caring role and the vascular dementia diagnosis was just "one more thing" to take on board.

Friends vanish, families back right away, outings together become a thing of the past but a new kind of life does emerge. In it everything is chaotic and the world is topsy turvy. To a lot of our acquaintances I am wonderful Sue who copes so well, he is poor old Ray who doesn't deserve all this, does he? Carer and care recipient, you are still together, still a couple but everything is changed. The future is there but it is the present you have to deal with.

I find the computer takes the place of phone calls, phone calls take the place of visits. Trips are not to the theatre or the movies but to shopping centres and coffee shops. You do have romantic dinners but they are at home. Your world strinks but your mind doesn't have to. There is a world out there, you just access it in a different way.

Thousands of people are in the same position as we are, you will meet them at support groups or Carers Days, during shopping trips or on line. Keep up with those of your friends you really value, forgive them their ignorance and get on with your new adapted friendship. You have to grieve but you can't stay stuck in denial...dementia is too REAL for that. I know it all sounds simple when I say that but I have been there and done that, still do day by day.

Wherever we can, people like me who are further down the path than you are will reach out to give you a helping hand, a piece of advice, a referral to another service you haven't heard of before. Accept whatever people can give if they do it with a kind heart. You will do that in the future too. I know you have a mind for research etc so you can still use that via the computer.

I wish I had a magic wand and could whish this away, for you, for me and all those who go through is terrible diagnosis day by day.

Written by  suew, Friday, 4 September 2009 07:26

Hi Faye. I've started to write a reply to you here a few times but have struggled with what to say. Your description of what alzheimers does to the sufferer and carer is very well put, and very sad. My mum has alzheimers, but I can see it is very different when it's your partner, the person with whom you hoped to share a future, maybe travelling or otherwise enjoying retirement together. You are grieving for what should have been. Yes, the whole thing is just so unfair - I still feel that way about mum.
When we realised that there was nothing we could do about mum's alzheimers, we made the decision that she should enjoy every day, so it was kind of like a bucket list. What else can you do anyway? It made me feel better to do nice things with mum while she was still able and I have happy memories of those days. She now lives in a dementia support unit, but I still try to make visits happy and enjoyable for her. I take her something nice to eat, comb her hair - small pleasures.
I do think you need to join a group and talk to someone.
There are thousands of carers out there, just like you, whether through alzheimers, stroke, injury, etc. I am a carer of a disabled son and many of my friends are in the same boat. We have been carers for many years and still have many years ahead. It changes the way we live our lives every day, but life can still be happy and enjoyable. Most of us have partners to share the caring role, but we also get some help through places like home care and respite care to try to keep life "normal". Don't feel bad if you decide to use some respite care or day program in the future - you need some time for yourself.

Written by  tiserowi, Monday, 7 September 2009 09:41