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Coping with elderly parents – particularly Alzheimer’s Rant

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

  1. Lara mfl 05

    Lara mfl 05 Star commenter

    "Happy birthday to Lara's Mum" Thank you on behalf of my Mum.She'll be 84.
    Good news is that, just because it's her birthday they're going to release her tomorrow with carers in place to see if she can function on her own at home but will come and reassess her on Monday and, unless things change drastically we're looking at placing her in a home, something she always swore she'd 'rather die' than do. All the fight seems to have gone out of her these past 2 days.

    "Happy birthday to May's Dad on Sunday"from me too.With 89 he's got a few years on my Mum. Hope he has a wonderful time.
     
  2. Happy Birthday to them both. My dad always used to say that there wasn't a lot to recommend olp age and he lived until 89. My mum is now 88 and although on a path of deteriorating mentally, is physically able to outlive him by years. My M in L is 84 and has always been remarkable both physically and mentally. However, she has deteriorated physically in the last year and has just had an operation for a broken hip. So it's a visit to mum in her care home tomorrow (30 miles away) and then a visit to mum in law (70 miles away) on Sunday. My mum won't know we have visited, but M in L will be fully made up, with hair still coloured brown and will still look amazing for her age. I know which one I would love to be like if I live to their age.
     
  3. Sorrim

    Sorrim Occasional commenter

    Hi and happy birthday to Laramfl05's mum and May 2's dad.

    I've just had one of those really distressing phone calls from my mum of the "where am I?" " How long have I lived here?" " is my husband still alive.?" (he isnt) conversations. I finally managed to calm her down but it must be so scary for her and I am finding it heartbreaking. I try to answer her questions calmly but know as soon as she goes off the phone, she won't remember. I ring her every night but then she forgets and rings me as if I've not spoken to her for ages! Honestly, I could SCREAM! I'll now lie awake worrying while my mum ( bless her) will prob just go to bed and go to sleep. Sorry, just needed to let off steam. Thanks.
    Sorrim x
     
  4. Hi Sorrim. Poor you, this all sounds very familiar. I still have 4 messages, left in quick succession on my answering machine at the beginning of last year (a couple of months before mum eventually had to go into the care home) from mum, all wishing me a happy new year.
    I remember the first midnight call when she rang in a right old state, because she had convinced herself that my dad had left her. She was talking about calling her solicitor, so you can imagine what was going through my mind. I let her ramble on and finally bit the bullet and gently reminded her that dad had died over 10 years previously. Amazingly, her reaction was laughter and relief ('thank God - I thought I was going mad').
    I wept buckets when I got off the phone.
    The phonecalls continued and I eventually got used to them. I even managed a bit of black humour to lighten the mood ('have you spoken to your father lately'; 'no mum, short of enlisting the services of a medium, that could prove a bit of a challenge').
    It is utterly heartbreaking, but after a while you develop a sort of immunity to the awfulness of the situation. I don't cry about it any more. I just feel a sort of deep, hollow emptiness.
    However, I do now find myself crying at the daftest things. Which is quite awkward when you work in public facing role...
     
  5. jonowen

    jonowen Occasional commenter

    Manashee, I cry more recently too and it's getting worse. I don't know how I'll cope when Mum goes and I wish the Dr. hadn't said about Mum's time left. She was so confused on the phone yesterday and when I was speaking about her grandsons, she said "Who is John?" (there isn't one!) then I told her that we had been to see a musical and she asked was the food good. I asked her if the ladies were still coming in to wash and dress/undress her and she said yes but "they cant be trusted, nobody likes them so I tell them nothing!"
    It's awkward phoning too now as she will insist on struggling to answer the wall phone in the kitchen. They have a cordless, which we've told Dad to keep by his chair but he's worried it will go out of charge so leaves it on the base at the other end of the room. Mum roars at him to leave it and let her answer the phone - what a carry on.
    Hope everyone is happy as they can be..............
    Joni x
     
  6. May2

    May2 Established commenter

    So sorry to hear of all your Mum's confusion, it is horrible when they get like this.
    I hope Lara mfl's Mum managed to enjoy her birthday.I think my Dad enjoyed his but he came to my house for lunch, which I am not sure whether he really knows anymore and as soon as he had finished lunch he was ready to go back to his home. He kept worrying that the carers would be worrying where he was.He opened his family cards from children and grandchildren but couldn't remember anyone's names. Although it is sad we can actually see an amusing side to it as when trying to remember the grandchildren's names he always comes out with very unusual names but they always begin with the right letter. The only name he is always consistent about and always says the same wrong name is my son's girlfriend, who he calls by the name of an old pop group which rhymes with her actual name! It can be quite funny when he comes out with these names.
    Once back in his care home for his party he was just really happy to be back safe in the armchair where he always sits in the lounge. It is obviously where he now knows as home and feels safe.
    We stayed for his party which was very nice but twice he turned to me asking about his daughter. That was the first time he hadn't known who I was. His memory seems to be going quite rapidly, and there has been quite a decline since christmas. Oh well.

     
  7. Sorrim

    Sorrim Occasional commenter

    Thanks Manashee for your post - it made me laugh and I need a laugh!
    Joni I'm so sad to hear about your mum - it will be something we will all have to deal with, but like you, I can't bear to think about it. Like you, I dread ringing her up - although I do so most days if only to remind her to take her tablets. I miss the 'real' conversations we used to have and end up saying the same things over and over because I don't want to stress her which makes things worse. I cry a lot when i come off the phone because it all seems so futile but then think its not fair on my o\h! I keep trying to remind her of the positives in her life because there's nothing else! I cry too because its so sad to hear my once strong, independent mum saying how lonely she is and asking me what day it is and struggling to remember her life. I feel really scared for the future and how I'm going to cope without her. The daftest things pop into my mind...who will I ring when I'm back from holiday? How will I feel when there's no birthday and Christmas cards from her?...so much so that I'm saving them!!! Honestly, if anyone who doesn't understand this horrible illness was reading this!!!! I sometimes think I'm going mad!!
    Some days are better than others and then I'm in a false sense of security and think things are going to be better. Sometimes we have a really good conversation and I come off the phone happy but then 3 minutes later, mum is on again with no recollection of having spoken to me. Sometimes she can ring dozens of times a night. I'm sorry to be so miserable - I'm really a very cheerful , positive, happy person but this illness has got me stumped! I feel anxious all the time. Thanks for the chance to rant.
    Hugs to everyone dealing with this situation and thanks to all those who willingly lend an ear at any time of the day or night.
    Sorrim x
     
  8. catherinaaa

    catherinaaa New commenter

    Hi all,
    Would like to join the thread please! I have recently got in touch with my grandmother following 15 years. I was only a kid when I last saw her. She is now suffering with dementia and although my other grandmother also had this, I was also younger then and didn't really understand it properly although I "experienced" it from things she told me etc.
    I am going to be meeting my grandmother for the first time during the easter break and am obviously very nervous, but excited. I have spoken to her on the phone a couple of times but she doesn't like this as she keeps getting confused and forgetful. Are there any tips/ideas for how I could make it easier for her on the phone? I want to try and build up a relationship as much as I can before I go over. She is also very scared that I will leave her again and I can't seem to reassure her.
    She is looking forward to my visit very much but she is also very nervous and I can't predict what her reaction to me as an adult will be. I can't wait to go but am so nervous about how she will be and what she is like now with her health. I have just ordered the book mentioned on this thread called Contented Dementia to try and understand a little more.
    Thanks for any help, it has been very interesting reading what others are going through.
    C
     
  9. Lara mfl 05

    Lara mfl 05 Star commenter

    Just a quick post in between rushing home from Mum's. who has no internet access.
    Well, Mum had no idea it was her birthday or who any of us were She just knew we were familiar looking after her, providing cake and making a fuss of her. Reading her birthday cards didn't even realise the one saying to Mum with our signatures and didn't recognise mine or my husband's names or the separate cards from her two grandsons Who are XXX and XXX? So in fact although the hospital has exacerbated her deterioration, she has taken a serious downturn. The best bits of the day when her oldest schoolfriend and relatives from Germany phoned and she managed to chatter away in German very animatedly. But then the effort became too much and she 'closed down' again.
    Today seems to be starting a chest infection (having got 'lungs clear' on her discharge sheet. So again disorientated and confused.She looked at me and said "Of course you're older than me." so I laughed and said "that' s an impossibility". How can your daughter be older than a Mum? Her reply was "You're my Auntie"
    Of course being in the hospital where she didn't know where the toilet was, they found it easier to keep her in an adult nappy, so has arrived home and is incontinent! keeps saying "there's something missing" so has become reliant on the nappy. Very unsteady on her legs again and so having to provide 24 hr care. A night sitter for 2 nights has set us back £260 and as I'm finding I'm not sleeping anyway I'm going to sit with her tonight.Been with her all day trying to remind her regularly to visit the loo , but still having accidents and mostly not even realising. So hopefully tomorrow she' s going to go in for emergency respite care and I'll come home and sleep and when I've recharged my batteries we'll think of how to move forward.
    Sorry this is such a moany post and I do sympathise Sorrim-been there a couple of years back with the constant repeat phone calls within a short time frame. Used to have to get husband and sons to field after the 6th or 7th within a half hour session. I like you used to be a nervous wreck and she probably just settled down.
    Oh jonowen you're coping with this too. Don't know (just at this moment at least) if knowing you have a short time frame is better or worse. being told my Mum has probably 4-7 years and seeing her present state, I wonder if I'm going to last that long. (Sorry that's just me being emotional.) We don't want our parents gone but seeing them with a lousy quality of life with longevity . . . .
    May2 glad your Dad enjoyed his birthday in his own way, although sad to hear of your Dad's decline since Christmas. I know now is the time to consider a home, as she has no fight left, is happy just to be looked after. Didn't even recognise her own home when we returned. "Didn't know I'd got a bungalow like this". Looks in each room for whatever room she's looking for despite the signs and arrows everywhere. Has come to the point where she's quite happy to be changed, put on 'night-time pants' (just because I can't face the wet sheets)which she would have kicked and fought about before and be led by the hand for anything. Can no longer initiate a conversation and today when another friend popped in to wish her Happy Birthday, knowing familywas round yesterday, founf it overwhelming and slept through most of teh visit. Fortunately the friend has lived through this with her own M-i-L, so wasn't offended.
    Love to all Coping Carers.
     
  10. Catherinaaa ... I thought I'd reply to your post regarding your gran's anxiety about using the phone. I think this is common in dementia. My mum has Alzheimer's and says she gets confused when speaking on the phone ... often she can't remember who the caller is and when they ask her questions she can't think of a response. She says she much prefers to receive a letter or card that she can read over and over again. That way the information sticks much better. You might consider sending your gran letters rather than just phone calls.
     
  11. catherinaaa

    catherinaaa New commenter

    Thanks Mrs Mo.
    Yes, I will take that on board. I have just written a card tonight in fact as I was wondering about that and thought it might be nice for her anyway, so will post that off and hope she likes it.I have sent lots of photos to my aunt and will continue to do this so my Grandmother can see them too.
    Reading everyone's stories is heartbreaking, cannot imagine the wrench it must be when it is your own parent. Lots of love and respect to all those caring for their parents/grandparents with Alzheimer's and Dementia.
     
  12. jonowen

    jonowen Occasional commenter

    Lara, thinking of you too. Mum fell again on Saturday and nobody thought to tell us till last night (not anything we can do but.............bloody awful says it all) Next step will be back into hospital until we get a place in a local home.
     
  13. Lara mfl 05

    Lara mfl 05 Star commenter

    Yes b***** awful says it all, and I'm not a person who swears. My heart goes out to you too jonowen-you're in a similar position.
    Yes PlymouthMaid. We'd more or less come to the decision that it was time for a home. Thing is Mum's always been so feisty about 'dying before she'll ever go into a Home (especially as she's seen her sister and sister-in-law in one) that I've tried very hard to keep her at home as long as possible. As I explained to the Social Services discharge person, that seeing if she would 'recover'once in her own environment and then if she didn't, it would make the decision easier. My Father trained me to dicover all the possibilities and then make an informed possession of all the facts. Seeing her back in her own environment was 'the missing piece' as it were.
    In fact although we brought her home I had got (as I thought) a bed booked in a local convalescent/ Care home from Monday should things not improve. However we're still waiting for that place- hence us doing shifts. Like you jonowen- the big risk factor is the danger of falling and seeing her from about 6pm onwards as she slows down and starts to become unsteady, we have regretfully come to the decision to look into a Home. Son spent today doing research and as soon as Mum goes in for convalescence/respite we can start looking at places and then see who's got room for her. Our area has an abnormally high percentage of elderly people, some areas over 60-70% pensioners! So even if we find one, finding a vacancy is another ball game. Friend has a saying "People come her to retire and die and then don't!" Many orbituaries are for 90-100 year olds.
    Thanks for all your thoughts. Mine are with you all too.
     
  14. Lara mfl 05

    Lara mfl 05 Star commenter

    Well, just returned from putting Mum into 4 week's post hospital discharge 'respite care'.
    Although we really had no option, it was really hard to see my feisty, proud Mother just sitting there, looking abandoned. Life is now reduced to eating what other people provide at times of their choosing, submitting to having every item of clothing labelled etc. etc.
    Unfortunately, although Mum didn't 'kick off' as I was worried she might, she did seem a bit more 'with it' and aware of what was happening and very bewildered by everything and kept saying 'I don't understand it all!'
    So back home to SLEEP, recharge batteries and then look what happens the other side of the 4 weeks, including coping with the guilt.
     
  15. Yep, this was me just over a year ago. It is so, so hard, Lara and you will be plagued by guilt, sorrow, regret and a multitude of other emotions.
    But, trust me, you are doing absolutely the best thing you can under the circumstances.
    Stay strong and look after yourself.
     
  16. Sorrim

    Sorrim Occasional commenter

    Hello Lara mfl, I just wanted to say I really feel for you-it is an impossible situation but as Manashee says you could not possibly do anything else in the circumstances. It is heart breakingly sad. Please take care of yourself. Here's a hug for you.
    Sorrim x
     
  17. Am pleased to report two good visits to see mum in a row. :)
    She seems quite chirpy and happy and has made another new friend - a lovely lady who is a retired teacher.
    A good tip re finding a good place for your loved one(s) when that inevitable time arises, is to pick the brains of your local ambulance crew. They know exactly which are the good places and which ones to avoid like the plague. They have to be very careful not to name names, but the nice chap who attended my mum last Feb gave me a big thumbs up and a smile when I told him that she was going for respite to the place that she now resides in permanently.
    It's one of the BEN charity care homes and they have an excellent reputation. Even if you or your loved one has no connection to the motor trade, they can bend the rules a bit. Here's a link:
    http://www.ben.org.uk/care-centres/
    Love to you all.
    x
     
  18. Lara mfl 05

    Lara mfl 05 Star commenter

    Good news that manashee.
    Wish I'd had that piece of info 2 weeks ago when we were in contact with ambulance crews.
    We're currently investigating Care Homes for Mum and it's a minefield.Again, I've a problem with health officials, who don't want to commit themselves. I need to know if Mum needs residential or nursing care and no-one wants to say. (We're currently investigating paying into an annuity to guarantee that Mum's fees will be paid until the end of her life and this is one of the questions.) Dr.s have been saying, we can't predict. IF she lasts till end stage then we might need to consider this.
    We've found a super Home, specialising in Alzheimer's, which we'd ideally like to put Mum's name down for -inevitably it has a waiting list! It's part of a trust i e not specifically to generate profit. Yet they say they won't deal with palliative (presumably end of life?) care?, as they feel hospital or hospice are best able to deal with those issues? How does that work? To have to move her at a time when she can least cope? So how can they say they are specialist Alzheimer's when that is the end result? So lots of questions when we visit next week.
    Currently she's in respite and seems quite settled and this is a dual purpose Home residential AND nursing Care. The longer she's there and settled, the harder it will be to move her- always supposing they have a permanent bed?
    So many difficult choices, but at least when talking with her this morning, my feisty Mum, who has always said she'd rather die than go into a Home did say this morning that she trusted me to make the right decision for her. Such a change, but pyschologically such a relief for me- though it's hard to see such a change in my Mum in such a short space of time.
     
  19. Visited my mum yesterday and she was asleep when I got there. She wasn't in a good mood when I woke her up and wasn't sure who I was anyway. She said that she had no family left in the world except for her dad. He died when she was 12 years old, so I guess she was back in some distant time. I gave up after half an hour and left her to go back to sleep. Not easy when you travel 30 miles to see her, but she's my mum and I love her very much.
     
  20. Lara mfl 05

    Lara mfl 05 Star commenter

    Oh mammal, a big hug [​IMG]
    I think that's one of the reasons it's <u>so</u> hard to put our parents into care. The important people in their lives become the everyday carers who look after them and they so often forget their 'family'.It's hard to make an hour round trip to spend half an hour with your Mum which has so little quality to it.
    I spent about 1/2 hour with mine yesterday and I might as well not have been there, she never once looked at me and didn't want to talk, other than say the inevitable "Yep!"( she says that to almost everything that's asked of her). I got a brief glance that I was someone she recognised as I went in, but no lighting up of her face, which she always does when she's pleased to see someone. It really is harder on the relatives for sure.
    Hugs to all those visiting elderly loved ones this weekend.
    As my cousin says (who's already travelled this road with her Mother and Aunt) "Strength" is what we need - inabundance. To hold it together whilst we with them at least- even if we dissolve when we're out of sight.
     

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