1. Les

    Les Registered User

    Jun 23, 2004
    Hello, this is my first post. My Dad has just been diagnosed with a 'degenerative brain disease like Alzheimers'. He went into hospital for tests and this is what he was told. We are still waiting to hear the exact details of what it is they have found. My Dad is only 68.
    I'm feeling so confused. On the one hand I had suspected this. For about three or four years now my Dad has been deteriorating increasingly with severe loss of memory, loss of manual dexterity, confusion, inability to remember dates and events, anger, depression and just this past year he has started to do very strange things, such as put on clothes in the wrong order, and get lost in familiar surroundings. In some ways it is a relief to have a diagnosis of any sort.
    But I am also devastated. My Dad looks so much older than his years, and I'm so worried that his bad physical state alongside his deteriorating mental state spells something very bad. I didn't think it would affect his physical ability so much. Is this common? He finds it hard walking long distances, he stumbles, can't cut up food etc. perhaps I should also point out that he is an epileptic, and is of course on very strong drugs for this. We wondered if this was all due to the drugs.
    I just don't know what to expect. And I'm so worried for my Mum, as she is the sole caregiver at this point. It's already a 24-hour a day job.
    I feel rather lost and don't know what I can do to help. I live a long way away from them, so the most I have done so far is to plan several trips up to be with them. I want to be there more, but I know it's also important to them both that they maintain as normal a life as possible right now and I don't want to make things worse.
  2. betty2

    betty2 Registered User

    Jun 14, 2004
    feeling the same

    hi Les

    I'm so sorry about your dad. your words are so similar to mine, to a lot of people on this site, and the scenario almost the same. My dad is only 62. he is my hero and the cleverist man in the whole world. he is healthy, kind, full of energy and spent most of his life fighting for the rights of others. I am so lucky to have a dad like him. I too lived far away but by chance moved back nearer home just as this was starting. However i had been away for other events and i know how difficult this is.

    I know, like you, that i suspected this for a long time before the diagnosis, but It doesnt reduce the shock and the feeling of utter unfairness and disbelief when you do eventualy know. My dad also does all the things now that you describe, gets confused in familiar places, stumbles, takes ages to get clothes etc the right way round. I sometimes find it hard to keep my frustration with this at bay. my disbelief manifesting itself in irritation and anger!

    The natural reaction is to want to do something about it. I even sometimes get moments when i think if only i work really hard at this then i could change things, make it all right. ( my dads daughter!)
    I am now slowly coming to the reality that I can make things better, but i cant change it.

    I too worry about the huge burden this is going to place on my mother. I too have a ridiculous job.

    however, i talked to my employer and they have agreed that for the next 3-6 months that I can do flexible working. which basically means that I do 5 days in 4. this enables me to spend 1 day a week supporting my mother, mainly, in sorting out the raft of paperwork, following up phone calls, or just spending time with them to figure out basic support, needs etc. its tiring but if you are like me, it gives me a practical focus, and fulfils some of my needs too. ( dont forget you have needs too!) I dont know where your family live , or your situation but maybe this is an option even if it was less frequent

    I think you are right to try also to keep it in perspective, life does go on, and i was very concerned that my dad didnt feel like an invalid all of a sudden. I try to make sure that some of our time is just normal time.

    this site has been great for me, keep posting, whatever you feel you need too, there is always a supportive ear. the information on the main site is invaluable. do/ ring/ go and see your/their local society, they will put you in touch with organisations, (community metal health teams, carers support groups,) who can do both emotional and practical things for you mum. You can play a role then by phone, by organising. usually these organisations can arrange a visit when you are around.

    Do look after yourself, dont beat yourself up about it and do have a cry from time to time if you feel like it, its a great leveller. ( personal view)

    hope to hear how your getting on.

  3. Kriss

    Kriss Registered User

    May 20, 2004
    Hello Les

    I could have put my name on the bottom of Betty's reply, so much was the same!

    Yes my Dad too spent many years during which his memory gradually deteriorated, dressing became a problem and he would get "lost" when driving in unfamiliar places.

    His physical health took a turn for the worse when his heart failed and when we brought him home from hospital 6 weeks later he was a changed person. The whole thing had accelerated. He was unsteady on his feet and confused of where home was and sometimes who we were. and had difficulty selecting the right cutlery or would poor lemonade on his dinner instead of gravy.

    My Aunt (his sister) has deteriorated in a much more stepped way - initially we picked up a few bad vibrations with reports of her driving and then - like Dad - having been admitted to hospital albeit just overnight, we saw many more symptoms such as inappropriate behaviour (such as wandering naked on the ward), some aggression towards the nursing staff, once again difficulty selecting the correct cutlery and the like and once home although she was very much in control of what she wanted and how things should be done, physically she has become very frail. After a further stay in hospital it seemed as if mentally she lost hold of the reins almost overnight. Up till then her memory was as good as mine.

    Everyone is different as you will see from reading the postings. There is no justice in this terrible condition - it seems to strike at the very best of people who are totally undeserving of its effects. You have probably already received the best advice, make the most of every day, try to be "normal", forgive yourself when your frustrations get the better of you, TAKE ONE DAY AT A TIME!

    Wishing you well

  4. Les

    Les Registered User

    Jun 23, 2004
    Thank you Betty and Kriss. I can't tell you how good it felt to check the site this morning and find messages from you both. I have an incredibly supportive husband but even so there's something so personal about having a parent with such a terrible illness, and as kind and supportive as my husband is, it's so comforting to speak to people who can understand exactly how I feel. When I heard the diagnosis I felt both childlike (desperately wanting to turn the clock back and have my childhood all over again) and parental - needing to be there and sort things out.

    I live in London, and my parents live in the North east of Scotland, so it's going to be hard to get there a lot. We have however cancelled our holiday plans this year and are going instead to drive up the country to spend time with them. I have two brothers who live closer, so we are hopefully all going to get together as a family and have a family weekend - something that NEVER happens normally, so I hope it gives my parents pleasure.

    I don't think my brothers have fully grasped what this all means, but we'll take little steps at a time.

    Thank you for your understanding.
  5. Beth

    Beth Registered User

    May 10, 2004
    Hi Les,

    I so much Identify with your feelings of wanting to revert to childhood and then wanting to be the caregiver. I was thinking the other day that I seem to have taken on the caring role for both my parents because my mum, who was about to go and visit dad in hospital, asked me what questions she should ask the doctor.

    I also know what you mean about how personal it is to have a parent with this. It's strange because so many of the things my dad does are funny to others but not to those of us who are witnessing the deterioration and confusion of a man who contributed so much to our lives.

    kind regards


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