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Coping with elderly parents – particularly Alzheimer’s Rant

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

  1. lindenlea

    lindenlea Star commenter

    My uncle died of pneumonia. I'm sure he knew he had it but refused to go to the doc because he'd decided it might as well be that, that took him as anything else. His quality of life was pretty poor.
  2. guinnesspuss

    guinnesspuss Star commenter

    Really interesting to read these posts.
    My mum has gone through quite a few of those stages. She was always quite acidic at times and could be downright rude. In recent years my sister and I used to cringe when we took her out as she was quite intolerant and not frightened to speak out her opinions. There was no way this side of hell, were we going to get her to accept a care worker. She told stories about the war years constantly and spoke of Dad every day. Not much existed in the intervening years. Then she began to invent things such as looking after two children, which I think she dreamed and was quite relieved when I told her it wasn't true.
    However in July last year she suffered a stroke, losing the use of her right arm and leg. There was no way she could return to her home, but she kept asking when she could. Eventually she accepted that she needed to be cared for and that we couldn't physically do it. She disliked the fact she was in a home and would make comments about the 'old folk' there and be quite brusque.
    In Autumn she became quite ill and was in hospital for a long period when she returned to the nursing home it was as if all lights had been turned off. The doctor told us that part of her brain had atrophied. She no longer tells stories of the war years and, most upsetting, can't remember Dad. She can't remember even simple things that have happened and just remembers us. She asked me the other week how her Mum was and why couldn't she go and live with her. Grandma was 96 when she died 24 years ago! The one consolling thing is that she seems very placid and quite content.
    Thanks for the thread I think I'll use it.
    emerald52 likes this.
  3. PlymouthMaid

    PlymouthMaid Occasional commenter

    Thank you. You are right, Dad does have many Alzeimer traints including mood swings and aggressiveness. He has forgotten how to do many things and often seems unaware what time of day it is which results in him making his breakfast int he evening and so on. I didn't know that about the Pneumonia vaccine.
  4. Lalad

    Lalad Star commenter

    Can totally relate to this - are you sure you're not my mum's long lost daughter??
  5. jonowen

    jonowen Occasional commenter

    Thank you for starting this thread Lara. My Mum-in-Law has vascular dementia (caused by smoking) and I can relate to much of what has been written so far. She is more of a Mum to me and it has been so hard trying to get to know another person as this awful disease kicks in. She has always been outspoken and blunt but kind hearted and generous too. We live more than 300 miles away so it is a case of every holiday we go down and cook, clean, wash,do the garden and sort out what we can in the short time we are there. I'm thankful that because Mum is so immobile due to her breathlessness,she will not wander outside. We have struggled/fought for carers to go in twice daily and at last she has accepted them. still not happy with having a weekly bath (once a fortnight is more than enough she says!) but it's a great help knowing these lovely ladies are going in. My F-in-Law is still alive but he is 85 and not fit, plus he can't do anything right so tends to do nothing! He can drive so does the shopping in peace (armed with list for same stuff week in and week out despite them not eating nearly as much as they used to).
    Anyway, my husband's brother lives 20 mins away from them and visits twice a week. He took Mum to the Dr. yesterday for a routine appointment and they saw a new Dr who had the bedside manner of the rudest person you can think of. Apparently Mum asked when was she going to get better and Dr. said "You're not", brother asked about having oxygen for Mum and Dr would not discuss it with him. He said Mum's consultant had requested a letter, signed by Mum, agreeing to discuss her medical history with us and that had been done 4 weeks ago. Dr said we need to write another one to her.
    Oh dear, it's just one thing after another at times isn't it?
  6. Lara mfl 05

    Lara mfl 05 Star commenter

    jonowen, glad you've found us.
    This is certainly a problem many of us share.
    It's even more difficult for you in view of the distance. That Dr sounded incredibly unsympathetic.
    Sometimes it pays 'not to be truthful' I think but apparently it is the 'patient's right to know!' I know it was when the consultant just came out and told Mum she had Alzheimer's,( that, even though she doesn't always remember, the feeling and emotion is there), that she started to give up and go downhill faster. I'd been trying to indicate to the consultant not to say it straight out, without Mum 'twigging', as she is well aware of what end stage Alzheiemer's looks like, having seen it three times before. Needless to say, she doesn't like the idea of that happening to her- who would?
    Herein I think is one of our biggest problems. If they retain even a bit of understanding, it's so hard for them to 'relinquish control' as they see it.

    emerald52 likes this.
  7. GeeMarie

    GeeMarie New commenter

    I can't say how happy I am to see this...
    I'm not a carer, but my Nan is suffering from Alzheimer's. My Grandad has kept her at home, my Mum, Aunt and Uncle spend a lot of time with them, Nanny-sitting, as they call it. Especially my Mum and Aunt. My other Aunt does nothing unless forced, and it makes me so mad. I live too far away to be of any real use, so when I visit I try and do my bit, and I call to speak to my Grandad as much as I can just to let him know I'm thinking of him.
    It's so weird to see her the way she is now. She used to be so funny and sharp, and potter around looking after everybody, making sure my Grandad's Diabetes was under control and cooking us delicious dinners. Now she barely knows how we are. She mostly thinks of my Grandad as 'that oold bloke' and gets very belligerent with him. She doesn't really know who my sister and I are, but something seems to recognise that she likes us, because she always trusts us and sits with us when we visit. It's pretty much my only glimmer of light. I've heard her swear now! In 23 years I didn't hear a curse out of that woman's mouth, and suddenly she swears like a trooper. And she wanders. My family tried to put her into a care home so my Grandad could get some respite- but as soon as they heard she wanders they refused to take her, as they said if she goes they have to loet her. What? Then what is the point? Now Grandad refuses to try again, despite her rapid deterioration in the last 9 months, and she was already pretty bad. When he won't let her out (they have to lock all the doors to make sure she doesn't escape) she starts calling everyone a pig and demanding the keys. She walks up and down with her gammy leg and her bad back making herself hurt, all to try and get to her mum. I've never seen her aggressive before this. It's startling.
    I can't write everything I feel on hear now or this post will never end, but the idea of this being bereavment is exactly right. When my Dad's mum did a year and a half ago it was a shock- no one expected it, she was as healthy as a horse. But the shock wore off, and the sadness, though obviously still there, dulled. Now I can remember her fondly and be glad we had her for the time that we did. For my Nan, it's ongoing. Sometimes I think about it and I mourn all over again.
    I've done so much reading about it. My Mum is terrified it'll happen to her, as she watched her Mum's Mum and her Mum go through it. For anyone else worried about that (sorry if it has already been said, I'm afraid I skimmed the last few posts) I have been told by a friend doing his neuroscience PhD that there is no evidence of it being genetic. I grilled him about it, and he said that the chances of someone getting it because a family member had it are so small as it be almost zero. Also, apparently they are researching into a B vitamin becoming the possible cure. I can't remember the article I read but if you google it I'm sure it will come up. I know that isn't helpful for our loved ones now, but if in 20 years they have a cure, maybe for others we know who may go through it there is some hope.
    Sorry this is so long. I just started typing and then couldn't stop. I don't feel like I can type fast enough!
    caress likes this.
  8. Lara mfl 05

    Lara mfl 05 Star commenter

    Welcome roseangel, although sorry that you too are trying to cope with this problem.
    But is she happy there and you know she would be unhappy in a home?
    Even in a Care home there is what's called 'acceptable risks', so patients are not denied their 'right to choose', however much we feel this might not be the best. I know my own Mother, because of the history of seeing so much Alzheiemr's is adamant she is 'not going into a home'. "I'll die first before you put me in a home!". So we are doing our level best to keep her in her own home as long as possible, especially as she is still very safe there and not prone to wandering. She's resentful enough of the 'friends' (ie Carers) who look after her needs, but at least when they're <u>not </u>there she is happy pottering about, moving her things around, deciding when to eat, what to eat etc.
    I think we all agree this changeability ( even within the space of minutes sometimes) is all part of the illness. We just have to learn to celebrate the good occasions (personally I'm still struggling with this one).

  9. Sorrim

    Sorrim Occasional commenter

    Honestly, you can't imagine what a comfort this thread is becoming. Whilst I wouldn't wish this illness on anyone, I am so grateful that so many people understand what I am going through! So much of what you kind people write resonates with me-I could have written any of the posts.
    It was heartening to read that I won't automatically get Alzheimer's just because my mum has... That has been a big concern. My GP said we are all living too long and that's the reason we are seeing so much of it. I have to say though I keep 'testing' myself just to see if I can remember!!! I'm in my 50's!
    I try to take each day at a time and if we've had a quiet evening with no one calls, it's a good one but very rare. Then there was the night of 9 calls and counting! I am fortunate that I have a brother whom I can "share the pain" with. We text each other every day and he has a wicked sense of humour which keeps me going in the dark days. My o h is fab too which is good cos he gets a lot of the calls when I'm at work! My brother and I share the responsibility between us because mum lives an hour and a half away, so we take it in turns to visit mum which lessons the pressure somewhat. However, there are times when only a woman will do.
    I know, GeeMarie, exactly what you meant when you said you just kept typing-you could go on for ever and still never have said all you need to.
    Once again, thanks for starting this. Sending love and hugs to anyone needing to share the pain. We understand.
    Sorrim x
  10. Lara mfl 05

    Lara mfl 05 Star commenter


    So sorry to hear of your Mum's plight.,. Alzheimer's plus a stroke. What a double whammy!
    My thoughts are with you. Do come for a 'rant/moan' whenever you need to.
  11. Lara mfl 05

    Lara mfl 05 Star commenter

    Sorry to hear about your Mother's situation. With the increase of dementia, Care homes are becoming increasingly filled with people who are confused and disorientated.
    Indeed it is. They become frustrated and the only reaction is to 'lash out' at having to become 'dependant'.

  12. Lara mfl 05

    Lara mfl 05 Star commenter

    Can anyone help, who's experienced this?
    Mother (with Alzheimer's), always a bit of a dramatist, "I'm dying", I can't go on", type and we've always said she's going 'to cry wolf' once too often . . .
    Today we called the Dr, thats's once every week for past 4 weeks, as carer had said she had a sore navel and lady who brings her home from her luncheon club was very worried at her breathlessness.( Now have noticed recently Mother been hyper-ventilating, saying "I can't walk", whenever we take her out recently. Actually she walks very well, when co-erced and 'forgets' she's supposed to be struggling.)
    Duly put on Dr's call back list, but when I phoned her later this afternoonshe was incredibly lucid, actually answering questions logically, says there's nothing wrong, not in any pain, wasn't wheezing etc.
    So question is, how much do we go on what she says anymore? (Feel Dr's beginning to doubt too. He said to phone back after I've spoken to her tomorrow, and had it not been for others saying anything, would have put it down to Mum being out of her familiar surroundings and beginning to panic that others are noticing her shortcomings?At present she's very aware that something is' not right'.
    Anyone been through anything like this? Don't want to panic too much, but also don't want to miss the one 'true occasion' when I need to!
  13. I'm another in the same situation. My mum is in a carehome with vascular dementia and has been for the last two years, since just before dad died. I think looking after her wore him out!
    We had trouble with not being able to get power of attorney for her, as we had left it too late. Now hundreds of pounds have to be paid each year to the Court of Protection for pretending that they are making sure we don't deprive her of her money. There won't be much money to protect soon anyway as it is all going in carehome fees.
    Mum doesn't know who I am anymore, is always looking for where her mother is and has assaulted a member of staff and another resident recently. She can also be very sweet and loving, particularly when visited by her great grandchildren.
    She is very well looked after and is physically fitter than when she went in. She will probably go on for years!
    I've stopped leaving in tears after my weekly visits and try to make my visits as positive an experience as I can. I also worry that I might end up the same. I even think what would I do to finish myself off early if I found out I was heading that way.
  14. Lara mfl 05

    Lara mfl 05 Star commenter

    Glad you found us mammal.
    Good on you for going to visit your Mother so often, I often leave my own Mother's in tears and then my family feel the brunt of my frustration. i can just about cope now, but dread the day she has to go into a home as she says she'd rather be dead.
    As to your question (it's one others have posed too) as to whether we might end up the same; from my research the late-onset (ie after 65) variety is no more or less genetic and <u>if</u> one develops it it is likely to occur at a similar age to your parent's onset. I doubt if we're as fit and healthy as that generation (something to do with the 'good eating ' during the war and lots of exercise) and so will hopefully pass before that time.
  15. jonowen

    jonowen Occasional commenter

    Hi again, need a shoulder here - Dr. visited my darling Mum (in-law) yesterday with blood test results and was shocked how much she had deterioirated since she had seen her in Dec. To cut a long story short, mum is not able to be cared for at home any more (Dr. said this - we have been wondering about thissince Christmas but at 300 miles away it's so hard to know the true situation). There will be a meeting next week to weigh up what's best for mum. Then the bombshell - she has 6 months at most left - we knew to expect this, and at 83 mum has had a good life, but I don't know what I think.
    Just needed to share sad news.
    bert217 likes this.
  16. lurk_much

    lurk_much Occasional commenter

    I don't reallty need a shoulder.
    But I thought I would add myself to the list of those with a demented dad.
    I find it sad.
    Him being dead would be better,
    it would be no different but we wouldn't have so much thankless work.

  17. Lara mfl 05

    Lara mfl 05 Star commenter

    Oh jonowen big hug [​IMG]
    I agree it's so difficult to diagnose over the phone. having phoned my MUm after yesterday's incident (see above), but with my cough can't visit at present.Accodring to Mum she has no pain, no swelling and doesn't want a dr.!
    You reall need some more info from the Dr. Even if she were what's termed 'end-stage' they usually can't say how long she'll last end-stage <u>can </u>last years.
    If there's more going on than the vascular dementia , such as lots of mini TIAs or COPD due to the smoking, or if it's just all become too much for your father-in-law, perhaps it could just be a short time. Then you need to approach the Dr.s whether hospice care might be available. These people give help not just to the patient, but to the family and it seems you and your husband (plus father in law) need this!
    Thinking of you.
  18. Lara mfl 05

    Lara mfl 05 Star commenter

    Yes you do lurk_much. Anyone coping with seeing their parent like this does. Don't feel guilty when you would rather see them out of their suffering, anyone of us will understand that feeling. Let it not be long and drawn out is probably our first though when we think of them. Unfortunately so often it is though and it's the families it destroys with it!

  19. lurk_much

    lurk_much Occasional commenter

    Cheers Lara, it is my mum I feel sorry for. I shall be fine, I mainly provide practical support. Much of my grieving has been done. If he was a cat he would have been put to sleep a year ago. I am really posting to offer my sympathy to others that have posted on this thread.

  20. CarrieV

    CarrieV Lead commenter

    My Mum is 75 and is beginning to show early signs of dementia ( she is having some tests next month to see what type and to what extent) In many ways she is fine, she gets up, dressed, walks the dog ( although not alone any more as she has problems with directions and can't always remember which way to go-although funnily she can walk into town and do her shopping before walking back without any problems) does the washing and ironing and household tasks-but she won't hoover anymore as she can't remember how to! She doesn't want to answer the phone, as she is conscious she repeats herself, but will happily write letters. She can't remember how to tell the time ( and sometimes can't tell whether it is day or night!) and forgets dates and appointments. But she is not as bad as she thinks she is ( or at least my Dad says not!) She is becoming worried that she is a "burden" and terrified that we are going to put her in a home ( because her elder sister had Alzheimers and eventually had to go in a care home as she wasn't eating or looking after herself) but is also exasperated by her younger sister ( who also has alzheimers) who constantly repeats herself and forgets everything we tell her!
    My Dad, bless him, is taking both Mum and Aunt on holiday next week. He will hear the same stories and tales every 5 minutes from one or the other as they both forgot what they have told him but they will be able to remember every detail from their childhood. He has the patience of a saint and needs it!
    emerald52 and mandybear212 like this.

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