my mother has probable alzheimer's

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lulu, Nov 28, 2004.

  1. Dan4274

    Dan4274 Registered User

    Dec 8, 2004
    5
    Near Liverpool
    Hi,

    I came across your website a few days back and have just registered. Anyway, my Dad was diagnosed with probable AD about 5 years ago when he was about 60. He has been on various medications such as Aricept, Reminyl, Seroquel to name a few. I think these medications helped him quite a lot, they did seem to slow the diseases progression, however he has since become worse and now refuses to take it and becomes very aggitated and awkward.
    When we first heard the diagnosis we all thought that we would only have 1-2 years left with him. In a way that was true as in the 4th year his speech became worse and worse and now he is very hard to understand and his memory is almost none existent. But we still manage to communicate in our own ways and I know that he is happy and still enjoys life and at the end of the day, thats the most important thing.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Dan

    Although his condition has worsened, do remember that - whatever happens - he is still your Dad. The Alzheimer's may sometimes cloak him and make it seem he is no longer there, but if you peek between the folds, you WILL see him, and he will occasionally burst forth, as if to say "boo".

    This is the hardest thing - to appreciate that. Ages ago our GP said to me of my wife - "dig a bit and you will find her there". I thought he was mad at the time, but have come to appreciate that this is true. You simply have to refocus your relationship.

    Best of luck.
     
  3. Dan4274

    Dan4274 Registered User

    Dec 8, 2004
    5
    Near Liverpool
    Hi Bruce,

    Thanks for the reply and your right. On occassions he will say something or do something that he always used to do, usually something like whistling a certain tune when hes happy or when looking at old family photographs. It is hard as im sure everyone will agree, on occassions we can all get very frustrated but when I see these breif glimpses of my Dad it eases it altogether.
    My main concern at present is for my Mum who is my Dads primary carer. Luckily I still live at home so I'm always on hand and happy to help. However she isn't able to get out on her own as often as she would like. This is due to the fact that Dad gets very aggitated when she wants time on her own and on occasions will insist that he goes with her. Also he can, on very rare occassions, become violent. For me this is my main concern as it seems to spring from nowhere and I think that this could become a serious issue. It would be ideal if it were possible to get my Dad to go into a home for a weekend or even a day now and again but I know that they would be unable to cope with him and he would flattly refuse. We have been told that the only other option would be to have him sectioned but I really don't want my Mum to have to make that decision and I dont no anything about it, only the horror stories that you hear. That would have to be a worse case scenario. He's just started a new medication hes already on Reminyl but he also now takes sailen (i think thats how its spelt) its an antipsychotic in liquid form. Any feedback on this medication would be great.
    Anyway Ive gone on long enough! Thanks again
    Dan
     
  4. Chesca

    Chesca Guest

    Hello Dan

    Above all, as Bruce says, remember that Dad is still in there; he's just having a terrible struggle and needs all the love and support you are both so obviously giving him.

    It is very important that you address the issue of Dad's aggressive turns as soon as. For everybody's sake - there is a risk to you all. The antipsychotic should help to calm the situation but monitor it carefully to ensure that it is effective and if not get back to the consultant immediately. This is one of the most damning effects of AD and seems to be a very common occurence.

    My Mum, a loving, nurturing and gentle woman turned into a virago as a result - Dad, extremely patient, brave and stoical suffered many a battle wound (hidden from us for a long time) without any reaction from him. Unfortunately, this is not always the case - he, himself, counselled a lovely gentleman last week who in the stress and grief of caring for his own wife had lashed out at her after one beating too far, not with any lasting damage to her but enough to frighten and devastate him. He was distraught at his actions. I am not suggesting that this will be the case at home but it illustrates the stress that caring for an AD sufferer can induce. One of the things to remember is that it is not your Dad who is aggressive, it is a manifestation of AD, the illness. Remember that, when people tell you 'he is aggressive'. Once some suitable medication is found Dad will be considered for an EMI nursing home should that be you and Mum's wish.

    In the matter of a MHA Section Order, the very nature of it negates anything you and Mum would want, although you are entitled to present your objection that 'every other avenue has not been explored' where they haven't been. For instance, the Hospital staff (professional nursing staff) wanted to Section Mum in order to administer her medication! We could administer it and were prepared so to do! They had not 'explored all other options.' The only positive to come out of admission under Section is that any nursing home costs will HAVE to be fully funded by the Health Authority. Sectioning is NOT the only option, it's the easy and last resort of the inadequate medic where AD is concerned (in my opinion -and experience - only, of course!).

    Try breaking the drugs up, putting them in something he likes to eat - jelly, custard, cake any old thing and allow him to take his time. AD sufferers find it increasingly difficult to swallow and can only work at their own pace.

    If somebody had told me my Dad would be counselling another carer at his weekly carers' meeting (attendance at which is no small miracle in itself) I'd have laughed you out of Court. It is one of the most extraordinary aspects of the beast that is AD that so many incredible people are drawn together on TP in support of others - each with a different experience to relate, a listening ear and lots of practical advice. I've found enormous support, friendship and, yes, fun, and you will too. So come back soon.

    Take care of yourself, too. Its all too easy to lose sight of your own needs and aspirations.

    Many best wishes
    Chesca
     
  5. Dan4274

    Dan4274 Registered User

    Dec 8, 2004
    5
    Near Liverpool
    Hi Chesca,

    Thanks for your reply. Things have seemed to calm down a bit now hes started his new medication. Hopefully this will continue through Christmas, well see. In the new year I think we will try and see if Dad would be willing to go into a home for a day or two so that Mum can have a break. Were quite lucky in that respect as we have an abundance of nursing homes close to where we live and I have had expereince with a very good one when my Gran moved to the area.
    Hope everythings going ok with you and everyone else on here. Ill catch up again soon.
    Cheers for now!
    Dan
     
  6. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dan
    I cannot imagine how we could ever get my wife to respite care.
    The alternative is some one too come and stay whilst Mom goes out.
    Again my wife played lights out at the suggestion but we worked on the idea that they were friends of mine from work or anywhere for that matter.
    Now Peg forgets all about them from one week to the next,but when they arrive she greets them like old friends.
    You have to work at it but rember these people, like sitters from crossroads ,are expert at the job
    Regards
    Norman
     
  7. Dan4274

    Dan4274 Registered User

    Dec 8, 2004
    5
    Near Liverpool
    Hi Norman,

    Respite care would be a welcome relief for my mum but I know there's no way Dad will ever agree to it. Hes always been strong minded, once he's made his mind up no one can change it. We have had some info form crossroads and after the Christmas period I hope my Mum will look into it further as then she might get a bit of her life back. We do have someone who comes to see my Dad, as Im in college, regretably I havent had the chance to meet him, anyway when he first came to the house my Dad wasnt interested in talking to him. I think at one point he even told him to leave! He continues to come every month and now Dad welcomes him as if he were a good friend so I can see that if we had someone to come on a more frequent basis, the same might happen.
    As I mentioned in an earlier post, my Dads on a new medication to help calm him down. At first it seemed to make a little difference but lately it doesnt seem to have any effect at all. He can become a bit aggressive from time to time. Anyway we have decided to put him back on the old medication (seroquel) which is a lot better.
    Incase I dont get a chance to get back on here soon I hope everyone has a Happy Christmas!
    Cheers for now
    Dan
     
  8. Doreen

    Doreen Registered User

    Dec 3, 2004
    50
    Oldham
    Hi Dan,

    Thanks for your reply, unfortunately, my husband is bad walking now so doesnt get as far as the front door without help, but he does shuffle around the house after the dog. I have been reading the other posts and I have found so much information reading the questions and answers it really helps. Regarding your dads aggression, my husband used to be both physically and verbally abusive but the Aricept helped that but now after 4 years it is clearly not doing the job it was, as the abuse is now beginning to rear its ugly head every now and again.

    Unfortunately, it didnt make him less awkward and he wanted me to be around all the time, but now thanks to our CPN he has agreed to me having 3 hours a week to myself and he has a visitor from Crossroads, this is great for me (not long enough but better than nothing) it isnt all plain sailing he complains every time I return home but I just let him get it out of his system, then it is forgotten until the next week.

    Also in the pipeline is a day a week at the hospital where the consultants are watching and assessing, but I cannot see him agreeing to this, only time will tell and I will keep you informed.
    Hope you have a nice Christmas.

    Doreen
     

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