1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. catm

    catm Registered User

    Jun 13, 2006
    14
    Merseyside
    Hi, this is my first post, so I'm still getting a feel for TP. Had a really bad day today, and I feel really alone, despite the fact that my mom is always here. I just miss her, even when she's in the room, because she's no longer my mom. Some days the strain of looking after her is more than others, and the problem is it never ends. Even easier days are still hard. I still haven't got used to the fact that she talks out loud all the time, even in her sleep a lot of the time, so getting any rest is hard. I've had people say," Get her in respite for a week", but they don't seem to understand that when your whole life is taken up with looking after someone else, not having them there leaves you with a hole you don't know what to do with! Sometimes I wish it would just be over, and then I can try and remember the wonderful person she was, but it seems so far off, and I feel pretty guilty for feeling like that anyway. Maybe I'm not alone in that, but the illness has robbed her of so much, and she still looks like my mom, but the substance of what made her the amazing person she was is gone and it's not cmoing back. Here's hoping a cure can be found before too much longer.

    Cat
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Cat, and welcome to TP.
    You are not alone in somedays wishing for it to be over - it is so very hard. Do you care for your mum on your own? How long has she been unwell? Do you get any support, or does mum attend any day care?
    You are not on your own anymore Cat - there are always people here to talk with; though they do not know your situation exactly, they will know where you are coming from. So feel free to post. Looking forward to getting to know you better.
    Best wishes,
    Helen
     
  3. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hiya Cat
    You're certainly not alone...i care for my mum at home but I do have a husband and three kids too and they generally keep my feet on the ground and keep me (reasonably) sane even though i vent my anger and frustrations on them!!! I too have days when i wish it could all be over.....unlike you, I haven't been brave enough to admit it!!! I just want mum to "go" with a bit of dignity left...
    Keep posting
    Love
    Wendy
     
  4. HLon

    HLon Registered User

    May 30, 2006
    17
    London
    it's ok

    hi Cat,

    I could have written your post, the words sounded so familiar. One of the many hard things about dementia is that you are gradually losing someone, and in an incredibly prolonged and confusing way (for all parties). Someone who meets your mum right now can get to know her as she is, whereas for you - us - we are always aware of who our mums were, of being able once to be cared for by them until this role-reversal took place - incredibly painful. Remember that many of the emotions you will feel are like a sort of cycle of grieving - sometimes it's helpful to know that, since that's an experience most of us are familiar with. It can feel incredibly isolating both in terms of what emotions you feel and in terms of practical day-to-day experiences - that's where TP comes in to disprove the isolation!

    Also, it's both natural to think it would be easier if your mum were already dead and natural to feel guilty about that thought. In fact, the former is true, and that's OK. I think you're brave and honest to admit that. Also, you show insight and realism - some people I find, eg my mum's friends, are in denial as to the terminal nature of this disease.

    Do keep in touch. Let us know how the day's gone. Make sure you take some time for yourself to do something gentle, or indulgent, or to take time over a mundane task - you need to be cared for too.

    love Helen
     
  5. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Cat,
    I too wish my Mom would just pass on. She is a tortured soul most of the time and I hate seeing her burst into tears because she is so confused and scared. I seem to be the only one she still recognizes and goes to for comfort but I know once she forgets me she will be alone in her mind and horrified.
    I will celebrate for her when she dies. She will be free of this horrible illness and a whole person reunited with others that she loves. And I do not feel guilty for feeling that way. To wish her here, the way she is, is me giving in to what is good for me, not her. I will miss her terribly but I know it won't be forever and when I do see her again she will be the Mom I used to have.
    Take care,
    Debbie
     
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi Cat

    Adding myself to the list of those who think the unthinkable. :eek:
    My brother has just been over for a visit (from Australia) and in a heart-to-heart about Mum, we both said 'a nice clean heart attack', quite soon please, would be preferable to the long goodbye.
    Sadly, life isn't so kindly disposed, so we shall just have to roll with the punches and deal with what comes along, day by day.
     
  7. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    I'm so relieved to read that there's so many other's thinking the way I do - I've felt so guilty for wishing that Mum could just have a heart attack - I feel awful even typing it.
    I can so relate to that rummy

    I just hope that my kids never have to go through the same with me - I agree with you Cat - I too hope a cure can be found in the next 10 or so years.

    Libs
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I rather think that anyone not thinking the same thoughts at one time or another would be somewhat removed from the reality of their relative or friend's condition.

    I've had the same thoughts, of course.
     
  9. catm

    catm Registered User

    Jun 13, 2006
    14
    Merseyside
    Hi,
    Thanks so much for the support, I really appreciate it. Lynne, that exact phrase is so familiar, it could have been picked right out of a conversation my sister and I had last September when my mom was in hospital for a day and a half having a breast cancer lumpectomy done. My sister said she thought I'd been brave to sanction the surgery for her, but was it the right thing to do? I told her I didn't know, but that Breast Cancer's survivable , unlike AD and I didn't want to make her health any worse! Given the way we were treated by the NHS and lack of understanding of her AD, once it was a done deal and we went to collect her I did wonder, and I certainly wouldn't put her through anything like it again, no matter what the circumstances, but that's another story for another time. I did write a long response to you all, but sadly the site logged me out as I previewed it, so this is much shorter. You should be grateful, as it was starting to resemble War and Peace!:eek:

    Don't know if today is better, s she kept me awake all last night and finally dropped off at 5.30am for a few hours, I'm feeling a bit sleep deprived and wrung out, but that has more to do with the Benefits crisis (Lack of correct advice, them having lost or not received the DLA form and certified copy of the EPA , on which all other benefits depend, meaning I have to do it all again and wait another possible 12 weeks before I get any money) that prompted the very bad day yesterday than it has to do with lack of sleep. I think perhaps it's time I spoke to her Consultant Psychiatrist again, although he may just offer stronger anti-psychotics rather than the sedative I originally asked for. I'd try something herbal except for the fact that she's on blood pressure medication, so anything with Valerian in it is out the window. If anyone has any ideas, please let me know....

    Thanks for being there and letting me get rid of some of the angst.

    Cat
    :)
     
  10. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    She is a tortured soul most of the time



    Debbie, you hit the nail on the head there....that's just what it's like....so cruel

    When I visited my aunt just before she died 6 years ago(she also had dementia) there was another lady in the care home who wailed all day long"Help me....Help me" and she just seemed in so much torment.....perhaps that day was to prepare me for what's to come???

    I am so relieved there are so many others who have these thoughts about their loved ones dying.....sometimes I wish ,when I take mum her first cuppa of the morning, that i will find that she's passed away peacefully in the night.....
    Wendy
     
  11. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya all,
    I am fortunate, mum seems fairly happy. She has days when she is very tired, and unresponsive, but when she is responsive she is smiley.
    So maybe the future does hold a time of less anxiety for your loved ones - the downside is that there is less of everything else too.
    Love Helen
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Lionel often says these days that he is just sitting and waiting to die.

    What he is really saying is that he wants to be free of this dreadful illness, and that is what most of us really want. for our loved ones. Unfortunately it is not to be.

    My thought are with all of you. Take care,
     
  13. catm

    catm Registered User

    Jun 13, 2006
    14
    Merseyside
    Terminal illness is never easy to deal with, but at least with some you know what you're getting, how long it will be. With this, you never know on either score. I think to be honest, the people we love who have the disease are depending on us to be brave, deal with what comes and let them go with as much dignity is left to them when the time comes. Not that that one is particularly easy, as sometimes you have to fight hard for them and trust that you knew them best to know what they'd want.

    So, to tell you a little about us. My mom is almost 57 and was diagnosed at 54, so we're almost three years on from diagnosis. It took two years to get the diagnosis, after she'd had what felt like every test known to man, although she'd been having memory problems for about a year before that that was diagnosed as depression and she was given Prozac. Not much use if you forget to take them though, huh? Anyway, I am her sole carer (A 34 year old single, with no life!), as my sister lives just over 150 miles away and to be honest I think she's still in denial even now, and either can't or won't cope with what's happening to mom. As she sees her perhaps every couple of months, she always sees a massive change in her and that frightens her, and also makes her dread coming so sometimes she chickens out. I get that, and I forgive her that, as I'd be the same if I wasn't dealing with it every day. I read a very interesting post about types of help and that the one which says "I wish there was something I could do" is one not to bother with at all; so true of my sister, and although I love her dearly I can't help but think that when my mom's life is over so will my relationship with my sister. She still seems to look to me to provide support for her (me being her big sister and all) when she needs it, and I always try to provide it, but without her understanding that sometimes I don't always have enough left over emotionally to do that.

    My mom does have the option of going to the local hospital day care (It's a Cognitive Function Unit , so used to dealing with people with AD), but as she has early onset, she's with a bunch of seventy to ninety year olds and she hates it, even though I take her and pick her up and let her know I'll be back later. The staff say she seems to enjoy it while she's there, but can refuse to co-operate with things like them taking her to the toilet. It's really hard work to try to stabilise her mood after she's been as she is just agressive with me for leaving her there, and as it takes me so long to try to calm her down it's not worth doing any more. If the point comes where she doesn't know where she is, then it may be time to try her with day care again. It's a difficult call, because although she can't get dressed or undressed by herself, won't remember to go to the toilet unless regularly taken, eat, drink, wash or go to bed by herself and talks to herself out loud (Sometimes having both ends of a conversation with herself) almost all the time, there are the odd moments when you can sometimes glimpse that she's still in there and it breaks my heart. I miss having conversations with her, and even asking her if she's hungry, thirsty or tired is beyond her comprehension so requires me to always be that one step ahead of her. You get really good at watching, observing and trying to make the right call. I sometimes feel like I've disappeared and I'm just a more able extension of her. I'm sure there are others of you out there who also find it nigh impossible to focus on themselves, as so much of your daily activities, thoughts and feelings are given to caring for someone else, that you never consider yourself and let's be honest, there's usually no time or energy left over to do that anyway.

    Coming here helps enormously though, so thanks to everyone who's let me know I'm not alone and that what I feel is pretty normal!

    Thanks

    Cat
     

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