1. poundpup22

    poundpup22 Registered User

    Feb 20, 2007
    3
    United States
    I was looking over your site this morning and everyone seemed to have a caring heart and very supportive...just the place I need to be.
    My mother (80) lives with me and has been diagnosed with early stages of Alzheimers. I watched my dads mom battle this horrible disease and it was the worst thing I've ever had to experience. She was in a nursing home when she finally gave up the battle, and I promised my mom I would NEVER put her in a home. Mom was always active, yard work, housework, just busy, busy and 4 years ago she broke her hip and had an aortic anurisim and it's been downhill ever since. She's very depressed and has all but given up on life. She sleeps almost all day, won't eat until I get home from work and put dinner on the table. She forgets...constantly asking me the same questions over and over til I'm ready to explode! Our conversations consist of asking me for pain pills, thats all. She's lost interest in everything and gets mad at me if I don't give her pills everytime she asks. She has osteoporis, fibromyalgia and COPD, I know she hurts, but I can't just fill her up on pain meds. When I get frustrated I know she senses it and begins to cry, then I feel awful. Sometimes I feel as though its selective on her part because when someone visits (which is rare) she doesn't complain at all. She was recently in the hospital for COPD and the 3 days there she never once asked for a pain pill or complained about hurting and as soon as I got her home, she started with me. I tend to feel like she just likes making me miserable. How do I deal with the guilt of not giving in to her and the frustration of her memory loss? I don't have a lot of patience and am under a lot of stress at work on top of everything going on at home. I really feel like I'm at my wits end. Does anyone have any encouraging words of advice for me...they are much appreciated and any suggestions are very welcomed! thanks!!!
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Poundpup22

    Welcome to TP.

    Words of advice and encouragement are to be found in plenty here. We all know the feelings of discouragement and inability to cope.

    I haven't any experience of the pain problem yet, but there is a similar thread on the subject running at the moment. You might find some helpful suggsetions here.

    http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=5562

    Your Mum certainly has a lot to cope with, and you are doing a great job managing to care for her.
     
  3. poundpup22

    poundpup22 Registered User

    Feb 20, 2007
    3
    United States
    getting help

    No I haven't sought any outside help. I've always been one to try to handle things on my own, thinking if I can't fix it, nobody can. :eek: I know that's not good, but it's hard to teach an old dog new tricks! I recently got married and my husband is my rock. He helps as much as he can, at least to keep me calm and I have a really close friend that I talk with and get things off my chest, but no professional help that understands what I'm going thru. It looks like that will have to be my next step. :eek:
    Thanks.....
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,656
    Kent
    Hi poundpup,

    I`m pleased you`ve found TP and hope you get the support you need.

    My husband and I promised each other that homes were no go areas, but in hindsight, I now realize you can never say never.

    It`s impossible to rise above the behaviour, of someone with Alzheimers, at all times. The behaviour is so unpredictable.

    It`s also impossible to do the right thing at all times. We get tired, especially those who are working, we becaome isolated, we are unhappy for ourselves as well as the ones we love.

    We really just need to concentrate on what we CAN do. We can help, support and love. We can protect, care and provide. We can share. We can rid ourselves of the guilt monster. We can take care of ourselves.

    Please keep posting. I hope you get the support you need from TP, and that support gives you the strength to keep going.

    Love Sylvia x
     
  5. blackburn

    blackburn Registered User

    Feb 20, 2007
    17
    North East
    New member needing help

    Hello everybody.

    I've just found the forum today and registered.

    I'll keep reading as I'm finding it a comfort knowing that I'm not alone.

    I have recently been told that my mother has a degree of dementia (diagnosed by a scan).

    Can anyone out there tell me whether it is normal behaviour for them to be up and lucid one minute and very down and confused the next. My mother's favourite expression at present is "Is this all just an illusion" I am worried that she seems to understand she has a problem whereas I have always been under the impression that the one person who didn't realise there was a problem was the sufferer themselves.

    Any help on this may help me to understand.

    Isabel
     
  6. janishere

    janishere Guest

    This sounds terrible I know

    Poundpup the dementia is incurable, it can only get worse with time. If your mother manages to survive future accident and illness, the dementia will get to its end stage eventually and then unless you (and your new husband) are some kind of saints, you will find it necessary to place her in an EMI (Elderly Mentally Ill) nursing home. The fact that even at the early stage of Alzheimer's you are finding it so difficult speaks for itself. You made a rash promise not to put your mother in a home, that was a mistake on your part. But that does not mean you have to stick with your promise no matter what, because, if you become ill physically or mentally ill as a result of looking after your Mum, and have a breakdown, maybe losing your job or even your husband as well in the process, you will be of no use to your Mum whatsoever. People with Alzheimer's eventually become doubly incontinent, cannot communicate and may even become violent and agressive (yes women too), so no one person (or even two people) can successfully cope with them. They need specially trained nurses, several for each patient throughout the 24 hours.

    Important others in your Mum's life you have disclosed mostly no longer visit or rarely. Simply because they cannot bear being with your mother for more than five minutes. So you and your husband are behaving like heros already putting up with as much as you do from her. It is not your mother's fault that she is like she is, of course not, but that fact does not make it any more endurable on a day to day basis, does it?

    You certainly sound like you need a holiday and the answer to that is respite care.
    While you are on holiday, you will be less stressed and can think more clearly and decide with your husband what to do when you return (as it should be his decision too). The poster who talked about "the Guilt Monster" was I believe trying to say what I am saying in a more kindly way. Remember you are human, you have your limits of endurance. You can only do your best and that will have to be enough for your Mum.
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Poundpup

    You don't say if your Mum has any AD medication? If one of the available treatments suits her you may find that helps the situation.

    But it sounds as if the biggest problem is boredom. Your Mum sleeps and doesn't eat while you are out at work so by the time you come home she is all ready to wind you up.

    It would be much better for her if you could arrange for her to have some company, paid if necessary, for part of every day. I don't know how you would go about this in the States, but there must be some sort of equivalent of Social Services?

    The important thing is that you get some help, before the burden becomes unbearable.

    Best wishes,
     
  8. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi poundpup

    I tried to cope on my own for five years until I was ground into the dust, you will need to be a very unusual person to manage this terrible affliction on your own. Seek help and nobody on TP will consider you a wimp, quite the reverse it takes courage to admit that you need help.

    Blackburn

    The symptoms you describe are very familiar to me, keep logging on and you will soon realise that almost any reaction, behaviour and mood is not unusual with AD.

    Keep in touch both of you.

    Dick
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,656
    Kent
    Dear Isabel,

    Welcome to TP. I`m glad you`ve found comfort in reading the posts. I think we all comfort each other.

    You ask about unpredictable behaviour. This form of behaviour is what makes it so difficult for carers to cope. We don`t know what to expect from one hour to the next, and need to be able to read the swings in order to be able to make an appropriate response.

    You are also surprised that your mother seems to understand she has a problem. Well my husband is another one who seems to have some insight into his Alzheimers. When he`s confused, he knows he is, when he has what I call a
    Lapse, he tells me his head is wooly, it`s like being in a fog and like a net cutain over his eyes.

    Unfortunately, on good days, he tells me he is better and the Alzheimers has gone.

    Keep posting and keep reading. Take care, love Sylvia x
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Isabel

    Welcome to TP. Sorry, I missed your post earlier.

    When you have a question, it's usually better to start a new thread (New Thread button at top of each forum). That way people will see your post, and it won't get lost among others.

    Not criticising, I'm glad you posted at all.

    I can't really help with your problem, my husband has no real insight into his condition.

    Just wanted to welcome you really. Keep posting.

    Love,
     
  11. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hello Isabel.

    My Lionel has always understood his condition. When he was first diagnosed he used to go to the library and read books on his illness.

    Nowdays he struggles. He doesn't remember what is wrong with him, and we spent the entire afternoon trying to make sense of this. He still has limited awareness, and that causes him terrible distress.

    In the begining his awareness helped us both to cope. Now........I am not sure what to think.
     
  12. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Janishere, Thank you! I think you've have made a hugely important point there ..... we many here need to remember - whether the promises are to ourselves or others ... they may have been made with the best will in the world, the greatest love and commitment, with the best intent ..... but sometimes start to become totally inapproriate ... and promises like wishes, and hopes, are not necessarily to be broken but need to change and adjust according to circumstance and everyone's best interests in given times.....

    Poundpup and Blackburn ..... welcome ... sure you will find lots of support here ....

    Love, Karen, x
     
  13. poundpup22

    poundpup22 Registered User

    Feb 20, 2007
    3
    United States
    Thanks to all of you for the encouraging words. It's nice to know that I'm not alone and there are people who understand. Mom's dr started her on aircept 2 days ago, so I'm hoping that will help.
    Mom has always been a loner, so I don't know that trying to relieve her boredom by getting her involved in a "social circle" of sorts would work. She's always had a "mean streak" in her...she's from France and we've always joked that its her "french temper" but it's getting worse.
    I retire in 7 months and am thinking by being here more will help. I hope so. I watched this horrible disease take my dad's mom and it scares me to death that it's on both sides of my family and from what I understand it is hereditary. Lord, I pray not!!!!
    I'm so glad I found this site and I appreciate all the words of wisdom!
     
  14. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Poundpup
    I promised MYSELF, that I would NEVER put my parents into care.
    That was when I was ignorant of what was involved and what was best for them. Although they are not in care yet, I am seriously thinking about it.

    When not at daycare, which they are attending less often, they are in bed all day, until they come to me for dinner. I ask, if they want to go out, to the shops, for a run in the car, but the answer is no. I think they are bored. Both are taking anti-depressants

    We live in a very quiet rural village. They are used to Glasgow, a City.

    I am now questioning my decision. What would be best for them? 24 care where they would have company and activities?

    I haven't yet decided. They are going to respite on Thursday and this time we will visit, to try to guage if they are happier and more stimulated

    As for this being herditary, don't worry, do your best to live for to-day. Who knows what will happen tomorrow. Anyway they may find a cure before we get there.

    Alfjess
    Alfjess
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hello again, Poundpup

    I don't think you should worry too much about AD being hereditary. It has never been proved.

    The AS website has a useful factsheet which will give you up to date info:

    http://www.alzheimers.org.uk/Facts_about_dementia/Genetics/info_genetics.htm

    In any case, as Alfjess says, a cure could come at any time.
     
  16. sunny

    sunny Registered User

    Sep 1, 2006
    598
    got to get professional help

    Hi, just thought I would comment. Poundpup, you cannot deal with this disease on your own. This disease will change your Mum completely. As far as pain goes, it is so hard to judge if its just pain or attention they are wanting or they "think" they are in pain. Try and get professional help, if your mum has to go into a home, then this might be for the best, if you get ill mentally or physically that would have to happen anyway! It may be that you need respite for a few weeks so you can have a break. All at TP are going through this terrible dilemma. I don't know what help is available in the States or what it will cost, but the symptoms of the disease are the same all over the world and I will be thinking of you! Good luck.
     

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