my dad - coping with alzeimers

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hi all im new to this site my dad is 86 he was diagnosed with alzeimers 3 years ago the last year has been the worst dad 1st went away last september we only left him in for two nights we couldnt bare it an said wed try cope again he ended up back there in december an spent a month there we said we owed it to him to try again at home he was taken back in again beg of april and is still there he is on a section an becos of challenging behaviour they will not discharge him home my mum isnt in the greatest health waiting for two hip replacements and she is in denial about dads illness but she forgets the amount of times she phoned ambulances an even the police becos couldnt cope with dad i went up most days to try an help wi him he used to beg himself to b taken away i know the doctors r looking out for his best interest but its so very hard to except an put him in a care home i cry every day and pray to god to take this pain in my heart away its such a cruel disease dad stil has lucid moments an knows us sometimes he glad to see us sothers he doesnt want us there he gets very confused an always asking where he is and could we take him to hospital i cry wether iv ad a good visit or bad i sit in my car an sob please someone tell me this gets easier although i dont c how i hope if we can eventually find suitable care home and dad gets settled it might b a bit easier to bare iv visited homes but just end up in bits an feel like my heart is breaking i worry about my own health now an then think thats selfish and im weak an must b stronger im losing relationship wi mum i love her dearly but she is turning against us an thinks we r like doctors i really dont know how much more i can take please anyone out there who knows what im going through give me some advice unless ur experiencing this u dont understand people an some family members tell me get on wi my life an back off but thats just not possible i used to visit most days iv now cut back to 3-4 times as advised by doctors but when im not there i just picture him sitting there all alone.

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  • Posted

    I know how u are feeling. My mother is in a care home. I went to visit for the first time and could only stay 3 hrs. I was totally depressed after visiting her there. One of the patients asked me if I was normal. I answered no. I just pray she pass away soon to be with my dad in paradise. This will not get any better. She will eventually stop eating and pass. Such a cruel disease, although she did recognize me this time! Count your blessings and take a day at a time.
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  • Posted

    I can only agree with Susan. I coped with my mother's dementia for nine years. I lived 200 miles away from her and was constantly back and forth, losing several jobs in the process. Now I'm taking care of a friend who has the same thing. Her family are all on the other side of the world and there's no possibility of her going back there now.

    My friend started out in a "normal" old people's home, where she spent two or three happy years. Then a year ago she had a psychotic episode - a bit like your dad, I suspect - and carried out several attacks on staff and other residents that actually amounted to attempted murder. They had no choice but to throw her out, as the home didn't have a separate dementia section. As a result she's now effectively sectioned in a psycho-geriatric unit where she'll end her days. She's still aggressive insofar as she can be, but she can't walk now and only has use of her right arm, so she no longer poses a threat to anyone. So now she just sits in her wheelchair all day, drugged, helpless and at the mercy of the ambulant residents - especially the men, who sometimes carry out sexual assaults on the women.

    I agree it's totally heartbreaking to see them like this, but you really can't do anything for your dad except just be there for him when you can. I think my friend still recognises me, but she mostly either ignores me or shouts at me to go away. However, the staff tell me that she often spends hours calling my name after I've left.

    Don't feel guilty about not being able to take care of him yourself. In any case it sounds as if you'd be putting your mother at risk if you were able to take him home. I see you're having to look for a suitable care home for him when he leaves the hospital. I've been through that one twice, looking for my friend's first home four years ago (and I struck lucky with that one) then having to choose a specialist home when she got discharged from the mental hospital last year. I know just how stressful that can be too - constantly wondering whether you made the right choice. (I believe I got it spectacularly wrong with the current place but it's too late now.)

    All I can say is look after your own health. Be there for your father but don't get upset if he shouts at you or ignores you. Even after people appear not to recognise their loved ones any more, there's often recognition at some level. It may well be that he does benefit from your visits in some way that you can't understand.

    But I'd say three visits per week is enough. You really need to look after your own health so you can take care of your mother. I'm not suggesting you forget him and walk away, but you're going to have to accept that there's not a lot you can do for him other than spending regular time with him, even if you both sit in silence. This is indeed a terrible disease but unfortunately there's no cure for it. You're doing the best you can for both your parents.

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  • Posted

    Hi, I first looked at this site 2 yrs ago , my dad is in care due to dementia and now not able to communicate , is doubly incontinent and has to be fed and washed. I am sure he does not know me . the latest assessment tells me he does not qualify for care funding and I need to arrange costs myself. Our system has totally let down the very people it was supposed to help. Rather than gastric bypas and stupid surgery by self inflicted illness, dad was healthy, fit , and took care of his he has to suffer when he's at his most vulnerable. my sister and I are having our hearts broken , I am getting depressed and like others am having to give up a job to continue to care for my elderly mum and dad., and manage my own health . I'm probably being very negative when I say I feel my dad is being kept alive

    to fund a care home. when is the question of best for the patient and family going to be REALLY addressed and not by some religious do gooders who have no idea what it's actually like to experience this mess that is elderly care in the UK.

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    • Posted

      Gale, I understand how you feel but it's not entirely a British problem. That being said, I've also seen how the NHS will jump through hoops to avoid paying for elderly care. As I've posted elsewhere on these forums, my mother was in a terrible state in her final years - incontinent of faeces, unable to find the toilet in her own home etc. - yet I couldn't get any help for her at all. It took me years to even get a CT scan and an appointment with a gerontologist. Then when I did, I was told that the result of the mental state test she did in my presence "proved" that she didn't have any signs of dementia! This in spite of the fact that she couldn't say where she lived, when she was born, what year (or season) it was etc. Then I realised that was because she was in social housing, so didn't have a house to sell to pay for her care. We got nothing - we even had to pay the full cost for someone to clean the house. She finally died in hospital after a relatively minor fall. She recognised me to the end, but the staff left her to die alone behind closed curtains because it happened at 9am and it was "against the rules" for visitors to be on the ward before 2pm. I can still weep over that one, nine years down the road.

      However, it can be just as bad in other countries. The friend I'm currently looking after is American. A year ago, when her family started looking at specialist psychogeriatric homes in California and New York, they discovered it would cost the equivalent of £8,000 per month!

      Fortunately, we both live in a continental European country that manages these things better, so she now gets adequate, if not ideal, care in a specialist psychogeriatric unit for about £2,000 a month (which she's fortunately able to afford, being fairly well-off).

      This doesn't, however, avoid the philosophical question of what we're doing in keeping elderly dementia sufferers alive. Or indeed of what the alternative is in this age when we all live so much longer. In my adoptive country you can legally express the desire for euthanasia when you're still mentally competent, to be used later on - though my friend never did this, so it doesn't apply to her anyway. I'm not much younger than her, and have no family at all, so I'm currently giving this one some thought. The downside is that you have to nominate someone else to make the decision when the time comes. I can't see myself putting that kind of responsibility on any of my friends.

      And to tell the truth, I'm relieved that my friend never put that responsibility on me. Every time I visit her in the madhouse where she's being kept - surrounded by people shouting, making animal noises, punching walls and occasionally each other (they're all mentally ill as well as suffering from dementia) - I ask myself whether I could authorise the putting to death of my friend or indeed any of her fellow-sufferers on the grounds they'd be better off out of their misery. I'm a former nurse, so they don't scare me and I've built up a kind of relationship with many of these old people, particularly those who never have any visitors. I subscribe to no organised religion, but this experience with my friend has caused me to question my previously-held feelings about euthanasia, rather than reinforce them.

      I fully understand the despair from which you're writing right now. Ten years ago, when the problems with my mother were at their worst, I often used to think that she'd go on for ever and I'd die first. But I don't think your poor father is being kept alive to help fund a nursing home. And I don't think you believe that either in your heart of hearts. I just think you're physically, emotionally and morally exhausted by this long struggle, as I was ten years ago. I can only say try and take care of yourself too. And there is light at the end of the tunnel, however far off it is. When my mother finally died, I was amazed at the grief I felt, rather than relief that she was no longer suffering. I realised that she'd occupied my entire life for the 20 years since my father's death (I was an only child, btw.) At the age of 62, I found I'd lost most of my friends, and had long since lost my job, of course - in a country where retiring age for women was already 65, so this affected my pension. But now I've successfully rebuilt a life for myself and can put those years behind me. Until dementia inevitably catches up with me...

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  • Posted

    Hi there susan. I have empathy for your plight. The fact is that you probably feel guilty for your dad being in the NH. Dementia post 65 or pre-senile dementia Alzhiemers pre 65 is one of the worst diseases imaginable. With the growth of the disease growing at a great rate of knots, because of new medications and surgical procedures; in the next few years the population with dementia type illnesses will treble or even quadruple. As you have or others have stated where on earth are the NHS and Social Services going to find the money to pay for it.

     What you have to do is start your grieving process now because there is no known cure for the disease just medication to slow it down slightly at quite a cost to the NHS again.

    When a person came into the unit I worked on we worked closelt with the family unit to explain the illnes in detail and the prognosis. So that the relative understood from the start that there was no going back. The illness would progress sometimes quickly, sometimes slowly. Normally the expected life from diagnosis was about 15 years. Natural causes would normally take place about that time. Actually telling the relatives the whole truth was reassuring to them. Not telling them I felt was not going to do them or I any favours. I would feel that I was Keeping a secret from them. If you need to talk any more just post and I will be happy to respond. Best regards Peter.


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