i desire help with dealing with a loved one who has alzheimers

Discussion in 'ARCHIVE FORUM: Support discussions' started by jade, Feb 24, 2005.

  1. jade

    jade Registered User

    Feb 24, 2005
    1
    Hi all (this is my first post),

    While watching the ITV drama "Dad", i found myself feeling increasingly sad and teary as the family's situation reminded me a lot of my grandmother who was diagnosed with alzheimers about a year ago. The thing is, at first i thought that we were all dealing with it very well and as a family, we would often laugh and make jokes out of her little mix ups; however, i have noticed that it is taking its toll on my father, especially when she cannot remember who he is (which is most of the time). Although i try to rationalise what is happening by saying that in my eyes the grandmother we always knew and loved has in fact spiritually gone to heaven along with our memories and good times, my father is unable to see it like this and although he does not physically show his sadness, i know that he is hurting.

    All in all, the point of my post is that i have no idea whatsoever of how to deal with alzheimers nor do i know anything about it (such as is it cureable?). It was when i burst into tears this evening longing for somebody to talk to, someone who is going through a similar thing that i searched and stumbled upon this website.

    I would be so grateful if anybody could please help me by offering me some advice or by sharing an anecdote.

    Thank you, Jade.
     
  2. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    #2 Norman, Feb 24, 2005
    Last edited: Feb 24, 2005
    Jade
    welcome to Talking Point.
    There are a wonderful selection of fact sheets on the Alzheimer's site.
    The will answer many of your questions.
    On the main Alzheimer's site www.alzheimers.org.uk in the top left hand corner is an letter i and the word factsheets.click on this and you will see the list.
    Come back again and tell us how you are getting on ,we are all here for you whenever you need to talk
    best wishes
    Norman
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Jade, and welcome to TP!

    Yes, I was watching "Dad" this evening, too.

    First, to answer your question "is Alzheimer's curable", well, no it is not. But it affects different people in different ways, and over different periods of time. Also, it can affect younger people, as well as older people - by 'younger', I mean younger than 65. Below 65 years, it is known as Early Onset Alzheimer's.

    There are some medications specially used for Alzheimer's patients, and these can help lengthen the time when the patients can maintain their mental faculties. There are also medications that can be used later, to make them more comfortable.

    Different people use different methods to make their pain less at seeing the decline of a relative with Alzheimer's. For me, I have found it best to believe that my wife is still herself inside the person that no longer knows me. So I search for her inside herself each time I visit [if that makes any sense], which is most days. We play hide and seek, she and I, and while I never really find her very often, I do get lovely glimpses of her as she changes hiding places every so often. Then sometimes, when I least expect it she says something really clearly as if she recognises me - this is the equivalent of her jumping out and saying "Boo!"

    As Norman suggests, there is a lot of stuff that you may find helpful on the Alzheimer's web pages. You will also find a lot on this Talking Point forum.

    Good luck, and don't be afraid to ask here if there is anything at all you want to know.

    Regards
     
  4. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    Hello there
    I am a full time carer for my 86yr old mum.when my brothers and sister have a get together it is all fun and laughs re my mums attempted contribution to the general chat. I guess we could all write a best seller re these conversations.
    When it is just mum and me it is not funny.It is hard work.
    You need buckets of patience and support to have time out.
    Regards and best wishes
     
  5. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi Jade, Welcome to T/P .I care 24/7 for my mum in law who is 91yrs old and as A/D ,no there is no cure but try and remember it is still your gran she may have lost her memories of you all but you can all remember those memories and how much she loved you.Do as norman says and look at the fact sheets i have found that the more i understand about A/D the better i am able to cope with it all.It is hard for all of us watching the people we love and looked up to seemingly return to childhood losing the skills we all take for granted, but i think once we accept the illness and A/D is a illness and that things will not get better the easier it becomes.You can talk to your gran about all the things you shared together she may well remember certain things thats the thing with A/D they can suddenly have times when they seem quite like thier old selves and you start to think they are improving then bang its gone again.If you find it hard to talk to your dad print him the fact sheets off he may well prefere to read them alone.If you can all pull together you can get through this and you will all laugh again!If you need any one that what we are here for ,we all help each other through the laughter and the tears,this site as been a god send to me and to many others.love storm
     
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Jade, just wanted to join in welcoming you to TP, My Mum had dementia, she passed away last July. Now Mum in Law is also in the early stages as you have described so here we go again. I've nothing to add, the advice you have already in your replies is wonderful and shows you just how we all help each other here on TP. Please post when you need us, we are always here for you, love She. XX :)
     
  7. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Hi Jade.

    I couldn't even bring myself to watch"Dad" I am going through my own private hell at the moment with my mum whom is in hospital and has vascular dementia mixed with alzheimer's.

    There is a vast wealth of info on alz out there, some of which very helpful, but the best education is the one you get living it with your loved one and reading the advice and supportive stuff you get here on TP because TP is the equivalent of the troops on the front line of a war, battling it here everyday.

    The best advice I can give as a full time carer to anyone trying to understand Alzheimers disease was from a fridge magnet a friend gave me.
    It says, "Don't try to understand me, just love me"
    That's the best advice on how to treat a loved one with Alzheimer's or Dementia, but that's only my view.

    Welcome to TP.
     
  8. LISA YOUNG

    LISA YOUNG Registered User

    Feb 1, 2005
    12
    BOLTON, LANCS
    Hi, I understand how you feel, my mother has AD and my Dad is her main carer although myself and my sister help as often as we can. My Dad puts on a brave face and sometimes pretends all is well, we are a close family and I can read him like a book. I watched Dad last night and felt very sad at the effects it has on families, and how we all have different ways of dealing with the situation.
    I have found the best way of coping is to talk about it, I kept it bottled inside as I thought it was the done thing and didn't want to upset my sister and Dad, but we have all opened up now and we talk about everything, good, bad and funny, it does ease the burden and worry.
    Good luck and keep talking
    Lisax
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Lisa

    and that's great advice - to talk about it. It does no good to keep it all inside, particularly if, for some reason, the carer has to hand over to somebody one day, perhaps to go to hospital themselves or something.

    ... and in talking about it - that helps others, too.
     
  10. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    Talk to who? This site is great but who can one actually talk to for advice on how to cope as a carer. I am not a nurse and my level of patience is disappearing fast.
    The awful thing is that I understand now why some in homes are given regular sedation. It was something I thought was terrible but now "I am on the other side of the fence". It is also a reason why I try to do my best so mum does not go into a home. What a mess!
    snuffyuk
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Snuffy

    there's a bunch of people on TP who have great experience of being a carer. Certainly they have far more experience, over a longer time, than I.

    I can't think of a better place than TP to ask for advice from carers who have coped with most situations. Of course, never forget the Alzheimer's Helpline, where the advice will always be more objective.

    For my own part, I made up my own way to care for Jan, in the absence of any knowledge. At that time I was not interested in talking to others in the same boat - I needed 100% of my time to be doing the caring, and had no time to learn how!

    You may find that you can mix and match from what those on TP have done, to come up with something that is best suited to your situation.

    Final point about sedation. Oftentimes, people think that homes use medications that sedate so they can have an easier time of it. That is certainly not the case at Jan's home, where, when sedatives are given, it is to ease the agitation of sufferers, and make their lives more bearable.
     
  12. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    Many thanks but what who is TP?
    snuffy
     
  13. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Snuffy, you do a grand job of caring, from what you have said in your posts it's easy to see how loved your Mum is. Of course it is good to talk face to face, but if we can't then one of the things that can help is posting here on Talking Point (TP). It isn't usually long before you get a reply, and that can really help when you are stuck at home with the walls closing in (I know that for a fact). Have you tried your local Alzheimers group? They can sometimes come out to see you and discuss problems and help available in your area, or they may have a meeting locally which perhaps you could attend if someone could sit with your Mum? The never ending treadmill that carers find themselves on is so exhausting. It's no wonder you are having a hard time right now with all you have been through just lately. I know what you mean about the medication, felt similar myself, but the way I looked at it was, sometimes you have to do what is the best and kindest for everyone in the equation. If that means a little help to get some sleep in the shape of a sleeping pill for your Mum, or a daytime medication to help control some of the aggresion or what ever, Snuffy, I took the help. It enabled me to cope better with it all and it kept my Mum out of a home too. Thinking of you, love She. XX
     
  14. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Magic
    How strange I have that fridge magnet!!
    I bought it in a church somwhere, when we had holidays and Peg was alright .
    Never thought at the time how the words would apply to us in the future.
    Norman
     
  15. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    hi snuffy
    i am just starting down the road of sedation ,my JIM came home from respite ,4 weeks since they had doubled his dose of quetiapine and added lorazepan,as and when needed,i thought he was starting to calm down prior to his respite stay ,now things have gone haywire ,he seems aggitated the whole day and becomes aggressive for the smallest reason ,i was told to use the lorazepan only when things got really bad as they are addictive ,so i have used very few ,yesterday things got really out of hand ,irang the consultants secretary to ask for a CPN she told me i was not allocated one and would have to waite till the consultants nexed visit on the30 of march ,well i wont repeat what i said to her ,but within 10 min i had a call from a CPN to say they would be here on monday ,in the meantime i rung the GP to visit ,she told me to use the lorazepanevery day ,and what did it matter if he did become addicted ,they would not take him off it ,well i have found they do knock him out ,wich gives me time to breath, but i am still very wary of them and will discusse it again when the CPN visitsi would suppose if things got so bad and i could not manage ,and that point is nearly there ,anursing home would use them anyway ,but it does not make it any easier to make these decisions
    angela
     
  16. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    I have a Social worker. I asked about a CPN but apparently I can have a social worker OR a community nurse.

    Re restbite. If Mum went, what if i didnot want to have her back???????????!!!!!!!!!!
    Snuffy
     
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    OK, lets just go with that thought for a bit, knowing you, that means you are at the end of your tether. If you felt that way, you should get in touch with your CPN/SW and tell them just that. Hand it over so to speak. Believe me, you wouldn't be the first by a long shot. Tell them you just can't do it any more and let them deal with it. Then, supposin' you did do that, whats the worst scenario? Your Mum in a home now, OK, if you can't handle it, you can take her back home. But, supposing it isn't as bad as you thought, you get quality time with her when ever you like, and you also get some life of your own back, not a lot, but you know she would be cared for 24/7 by the authorities. Snuffy, we all have our Waterloo, no-one would think badly of you if this is yours my love, thinking of you, love She. XX
     
  18. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    OK. everytime restbite/homes are mentioned Mum says a very determined NO.
    Any answers??
     
  19. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Snuffy, this may sound cruel to you, but basically, you have to take control and say yes. Its a bit like a toddler, ask them will they go to bed, what do they say, no. Your Mum, if she was well would understand that you needed a break to recharge your batteries from all this caring lark. Because she is ill, her response is that of the illness, not her own. You have to make the decision for her I'm afraid. If you don't, you never will get the respite you so badly need. Love She. XX
     
  20. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Hi Snuffy

    if you don't recharge then Mum will suffer for it as well.

    The old saying goes "You have to be cruel to be kind"???? even if it hurts you to begin with.


    Kriss
    x
     

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