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Coping with elderly parents – particularly Alzheimer’s Rant

Discussion in 'Personal' started by lindenlea, Feb 2, 2012.

  1. minnie me

    minnie me Star commenter

    @Doitforfree - this makes for a very difficult read. No quality of life and virtually no possibility of there being any in the future. Tough - my best
     
    agathamorse and cissy3 like this.
  2. Doitforfree

    Doitforfree Star commenter

    Thanks. It is a tough situation. My dad isn't one for making the best of things, which doesn't help, but his situation really is a depressing one. It's hard to disentangle what is the dementia and what is his normal disagreeableness soemtimes!

    He has hallucinations as part of his dementia, and also very vivid dreams. The other day he told me he'd had a nightmare and when I asked what it was about he said he dreamt he'd gone to Manchester! Well, it's not my favourite place but I wouldn't have described it as a nightmare.
     
    Mermaid7, agathamorse, cissy3 and 2 others like this.
  3. lindenlea

    lindenlea Star commenter

    @Doitforfree We seem to be hardwired to try and make things better and I remember coming to the conclusion that actually, we couldn't do that for my mother. She never accepted being in the home and was naturally a negative person anyway. Do you think the complaining is for your benefit and that he is more accepting of the situation when you're not there or does he really hate it. Taking my mother out had become very difficult but the home let a carer come to my father's funeral with mother and she really looked after my mother while we were out.
     
    cissy3 likes this.
  4. Doitforfree

    Doitforfree Star commenter

    I hadn't thought of seeing if a carer could come as well. That's a really good idea, especially as some of them will probably want to go to the funeral anyway.

    My dad is very up and down. The home call my sister (she lives very near) if anything particularly significant has happened but we don't know everything that goes on. Sometimes he'll talk about things with some enthusiasm bit mainly he's plotting his escape! It'll hit him really hard not having his friend. They were very attached to each other.
     
  5. Lara mfl 05

    Lara mfl 05 Star commenter

    Sorry to come late to this and glad others have posted some good advice.

    @Doitforfree I tend to agree with lindenlea, that sometimes we just have to accept that we can do no more and nothing we ever do will 'be enough'. Most people don't want to end up in a Home, even the best ones and actually just letting them moan about their situation, si doing our best for them. Just take it as read that probably they're not always as unhappy as they'd like to make out- they just need a 'relief valve'. And family are usually it.

    re your problem @emerald52 again I think similar advice. Sometimes we just have to stand back and let them 'muddle through' until that crisis comes when they will be willing to accept help. It's a 'real biggie' for them accepting they're reliant on others and often they get angry if you suggest help. It takes going in another direction sometimes and suggesting the opposite, that they're 'doing so well for their age' compared to others you know. Then when they realise that many others have some help they would be willing to accept, you can start from there/ With my mother it was going twice a week to the luncheon club, where although they did get fed, it was the company as they ate, which meant my Mum ate more. She sw others struggling and saw more of a range of aids than ever I could have suggested . Slow but sure and try not to persuade but 'guide' the conversation to how well they're doing without xxxxx.
     
  6. grumpydogwoman

    grumpydogwoman Star commenter

    I have been reflecting on this since my cancer. I know I'm only 64 but I'm independent and in charge and I cope and I'm the boss.

    Well, whaddya know. I have learned something. I am accepting hours of help a week from a friend aged 78. She can. I can't. Who made me Queen of the World? Turns out I'm not. Nobody is.

    I've been proud, arrogant. I'm glad I learned this about myself. But some people won't want to accept this and nobody can make you.

    There's been loads of good advice. Mine is more musings. Look after you. And people can't always get what they want. And what they want isn't always good for them.
     
  7. cissy3

    cissy3 Star commenter

    Absolutely.

    I see my Dad everyday, and although he's always been an easy-going and good tempered man, any complaints he has seem to land on my shoulders! To everyone else he speaks to, everything is just dandy! And in fact, I think he's actually very comfortable.


    Dad hasn't got dementia, but does have 'waking dreams' which are very real, and often disturbing to him, but tends not to let anyone else in the family know; the carers know of course. (Not that other family visit much.....ho,hum!)

    Anyway, all the best everyone.

    (And especially to you GDW. ........might not always be on the other thread, but thoughts always are with you.......)
     
  8. sunshineneeded

    sunshineneeded Lead commenter

    @Doitforfree, what a sad situation you - and your dad - find yourself in. There has been so much wise advice already and I can only echo what's been said … you are doing your very best and sometimes we just have to accept the situation, take it a day at a time and celebrate any small 'good times'.
    My dad also has early stage dementia. It's been a week or so since I posted; lots of the usual incidents many of you will be familiar with have happened - the 'what day/time is it?' questions; the 'are you on your way to see me?' phone calls at 4 in the morning. My sister and I both travelled to see Dad yesterday. My OH came too, and between the 3 of we managed to get him into the bath - getting out was even more difficult. This is a big step forward as it was the first time he had agreed to allow us to help him with any sort of personal care - but as he had clearly not been able to wash properly for quite a few weeks, it was very necessary.

    After saying he would consider a 'short break' in a nursing home (we've found one we like) he is now totally refusing and won't even discuss it. So, yesterday, after lots of research, we saw two companies with a view to upping his homecare to domestic and personal. We chose the one we feel best meets his needs and they will start Monday week. At the moment we've only talked about 'someone coming in every day to check that you're ok, make you a snack, do the cleaning and shopping.' We'll wait until next weekend to explain that they're going to help him wash and dress as well! They're going to start Monday week and we're hoping he's not going to be too resistant - I know it will vary from day to day. Also took him to the GP yesterday for flu jab, heart trace and blood tests, which was a major operation as he is so shaky on his feet.

    After he'd had a nap in the afternoon, we looked at old photos and remembered happy holidays when we were kids and had a caravan on the south coat … he did remember and it made him happy, especially talking about mum. As I said, you have to celebrate and enjoy even small successes.
     
    cissy3 and lindenlea like this.
  9. Lara mfl 05

    Lara mfl 05 Star commenter

    Indeed you do.
    Sounds as if you have a 'plan of action' for moving forward and yes all those 'repeat conversations' and phone calls are pretty par for the course unfortunately. And I never found a way to get my mother off the 'traintrack' which some people were more successful with.
     
  10. Sundaytrekker

    Sundaytrekker Star commenter

    My mother solved the phone call situation for herself. We used to get the confused calls then, after she had moved to sheltered accommodation, she just never picked up the phone to initiate a conversation again. For the first two years I could phone her and try to have a conversation. After that she blamed her hearing and put the phone down, so we stopped phoning her. I think it was partly hearing and partly her brain couldn’t compute the conversation. By then we had carers coming in three times a day and my sibling lived nearby. She managed like that for another two years before emergencies took her to hospital and eventually to a home. She’s still there 18 months later. Very confused but still with us.
     
  11. monicabilongame

    monicabilongame Star commenter

    There's a verse in the Bible which I keep in mind for when I get old and incapable: John 21:18

    "Truly I say to you, when you were young, you used to dress yourself and walk wherever you wanted, but when you are old, you will stretch out your hands, and another will dress you and carry you where you do not want to go.”

    Whatever the original interpretation was, I read it as the point in life where I will need assistance; even perhaps to the point of needing to be in a home, and hope that I will be able to accept the situation gracefully if and when it comes. This may not help anyone with older relatives in this situation, but we can learn from others and be better prepared for things in ourselves.
     
  12. Mermaid7

    Mermaid7 Occasional commenter

    It was my mum’s birthday yesterday. She’s had Lewy Body dementia for about 6 years. She doesn’t know who anyone is now, can’t walk, can hardly talk - just a few words, doubly incontinent, can’t turn herself in bed, has to be hoisted out of bed, can’t feed herself. We talked about a do not resuscitate order yesterday at the home - such a sad conversation to have on her birthday, not that she knew anything about it.
     
  13. lindenlea

    lindenlea Star commenter

    That is so sad, it is the only way though. Sorry to hear about your family's situation @Mermaid7
     
    cissy3, Lara mfl 05 and agathamorse like this.
  14. sunshineneeded

    sunshineneeded Lead commenter

    @Mermaid7, I'm so sorry to hear about your situation. Old age is very cruel sometimes. We had the official diagnosis for my dad this week; he has alzheimers and vascular dementia. We knew, but seeing it in black and white is still hard. He's had a real down turn, physically and mentally, this week, refusing to get up, eat or wash. He's polite but very 'vacant' when he speaks and just lays there, looking at the ceiling. He can't tell us what he's thinking about or what's wrong. He was sick several times and my sister called the doctor; doc said he is basically starving himself. Don't think he eats at all when we're not there. New care company start tomorrow, coming twice a day. We've explained this to him, but know he's not taking it in. I'll be going back down to him on friday. If this doesn't work, we are working on a plan to 'manage' his move to a nursing home. But it isn't going to be easy.
     
    agathamorse likes this.
  15. Lara mfl 05

    Lara mfl 05 Star commenter

    Oh Mermaid, that is so difficult when it's their birthday and they have no idea of what a birthday is, let alone anything to do with them. And one of the reasons I decided not to put family through 'trying to celebrate' with her. We did flowers, for their scent, a one family card, more for the carers rather than my Mum, and when Mum was no longer even to eat cake without it being pulped I even gave up on taking in cake and coffee.
    This is where, unlike other diseases which retain 'personality and awareness until the very end, where it really is more difficult for family than the sufferer, who remains blissfully unaware.

    @Mermaid7 Re the DNR / purple form-if they're still purple, do ensure that if your mum has to go into hopsital the forms always go with her in the ambulance and then on to the ward. If not standard procedure without them is to resuscitate apparently.
     
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  16. Lara mfl 05

    Lara mfl 05 Star commenter

    So you've finally got it in black and white. If you're anything like me, even when we had that , somehow my brain just couldn't compute my wonderful mum who had done everything to avoid dementia, with that. If you dad is anywhere near aware, as I think my own mother was when they told her, your father may be 'rejecting it' or struggling with what it means. The lack of eating may be feeling, "Well what's the point in going on?" or simply forgetting to eat and apparently they lose the sense of hunger or feeling full. Which is why my mother overate, because she didn't realise she'd just eaten.
    Glad you feel you've got something in place for your father. Hope it works out and remember you are 'doing the best you can do under the circumstances'. ;)
     
  17. minnie me

    minnie me Star commenter

    My sister in law has just had a call from her Mum’s G.P. Blood tests show very low blood count and severe anaemia. They suspect an internal bleed and possible cancer and want to do further ( non intrusive ) tests but have said she will not be a candidate for surgery ... My MIL will be 90 in March. Both my husband and sister very down to earth bout what this means and the kind of conversation they may need to have .Any thoughts/ comments / similar experience ? ( I realise that there may be other explanations for the results but I think we are mindful that her surgery / doctors - excellent- are being upfront and honest ).
     
  18. Lara mfl 05

    Lara mfl 05 Star commenter

    Sorry no-one has replied before now. I've been away in sunny Italy.

    The Gp could be being upfront and saying in view of age and poor health it may be surgery, which could be traumatic, or even fatl, is not an option, or it may just be that in view of age the cancer will just be slow progressing. My Aunt had 4 types of cancer for over 15 years and was told she would die 'with the cancer' rather than 'from the cancer', as the older one is, like everything else which 'slows up' seems cancer progression can be the same.
     
    minnie me likes this.
  19. Doitforfree

    Doitforfree Star commenter

    Sorry you're all having such a hard time at the moment. My dad's also not in a good place. The anti-depressants that were supposed to be being organised have never materialised so that's another thing we have to remember to nag the doctor about. They don't always seem to realise that things need doing straightaway. He's miserable now. He might not even be here by the time of their next visit and in the meantime he's very sad, and he could say least be feeling a bit better in himself.

    You're all doing a great thing for your loved ones. It's such a hard situation and they're very lucky to have you.
     
    grumpydogwoman and Lara mfl 05 like this.
  20. grumpydogwoman

    grumpydogwoman Star commenter

    I'm sorry @minnie me

    I did read it but thought I knew too little about it.

    But then who needs medical knowledge anyway?

    What's the point of tests? How about a few nice glasses of her favourite tipple to make her feel better? Give her a few tablets on the basis she almost certainly is bleeding internally. What harm can it do?

    What need of conversation? You look tired. Are you cold? Shall we turn up the heating? What do you fancy for tea? How about I give you a nice foot massage? How'd you feel about a chocolate eclair?

    I don't know what else there is to say!
     
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