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Coping with elderly parents – particularly Alzheimer’s Rant

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

  1. Doitforfree

    Doitforfree Star commenter

    My grandma, a lovely lady, lived with us for a few years, and on that basis my dad said he would never live with any of us when he got old because it was too hard having an old person living with you, even an easy one like my grandma. But now he is miserable in his care home. In truth none of us could look after him as he needs too much care, but I wish we could find somewhere more suited to him. Money's not an issue, but there just doesn't seem anywhere providing what would suit him. He doesn't want fancy and posh, which is all you seem to get if you pay more. He wants somewhere that's more like living in his own house, where he can choose more things. Of course he can't remember that when he was living in his own house he was also miserable and lonely and worried. And he always looks on the bad side of things rather than appreciating the nice things. It's so hard.
     
  2. minnie me

    minnie me Star commenter

    The guilt is a constant . No advice re Christmas Day when emotions / feelings can run high. Totally get what you are doing to help and totally agree that other duties best left to others. Don’t beat yourself up about it - there are no easy answers / solutions. Chin up
     
  3. Lara mfl 05

    Lara mfl 05 Star commenter

    I think as we've said before 'Guilt' seems to be the 'constant' in any care situation. Rationality tells us that taking them out of the Home will be problematic, yet somehow inside we feel somehow it ought to be possible if only . . . . ..

    I never did get over the guilt.
     
    agathamorse and Sundaytrekker like this.
  4. Doitforfree

    Doitforfree Star commenter

    My poor sister got called into my dad's care home tonight (she lives nearby) because he'd taken off his clothes in the lounge and was refusing his medicine and getting angry. It's so difficult. They don't call unless they're really desperate. I think he will have to move to a home with more specific dementia care and that's more upset for him and another thing for us to sort out. They've had a bug in the home so we've not been able to visit, which may have caused him to be more worried and confused. It's just one thing after another, isn't it? You just never know what's going to happen next.
     
    agathamorse likes this.
  5. Lara mfl 05

    Lara mfl 05 Star commenter

    Oh that doesn't sound good. And that's not that uncommon, especially if they've got an infection., though for us it' does indeed feel ' It's just one thing after another, isn't it? You just never know what's going to happen next.'
    It's just all so depressing and frustrating watching it all.
     
    agathamorse likes this.
  6. minnie me

    minnie me Star commenter

    Very distressing. I could not work in a care home - think it takes a very special kind of person and pretty sure it affects your outlook on life in general.
    How old is your Dad @Doitforfree ?
     
    agathamorse and Lara mfl 05 like this.
  7. Sorrim

    Sorrim Occasional commenter

    I’ve been there and I totally underwhat you mean. The guilt never totally leaves you, but you learn to adapt.
    My mum ( who had Alzheimer’s) was in her lovely care home for 2 Christmases. It was near me, so I was able to visit each Christmas Day. To be fair, it was cheery, Christmassy and lively with lots of activities planned for the day, but I felt so sad leaving her there, not because of the home, but because of the whole situation. I took comfort from a text my brother had sent me which was to say ‘ she’s calm, safe and looked after...I’m afraid there’s not much more we can do’.
    All the best to you,
    Love Sorrim x x
     
  8. Lara mfl 05

    Lara mfl 05 Star commenter

    I fully appreciate what you're saying Sorrim, though I confess I never completely 'learned to adapt' and the knowledge ' she’s calm, safe and looked after...I’m afraid there’s not much more we can do’ never really helped me personally, as I was only too well aware that had she been aware, of how she would be screaming ,"But it isn't real living! That's just existing". I well remember her saying in response to my "What would you like?" her answer was ,"For things to be like they were and me to be able to do all the things I used to do." That always broke me, as it was obvious she was aware of her shortcomings , which can be a characteristic of Vascular Dementia, their 'awareness' stays' much longer. :(
     
    agathamorse likes this.
  9. Sorrim

    Sorrim Occasional commenter

    It’s just so sad, Lara, whichever way you look at it... I totally understand what you are saying and I still have the ‘ what if?’ conversations in my mind... I must admit my brother was better at dealing with it than I was. As I said, the guilt has never gone away completely...
    Hope you have as good a Christmas as you can,
    Lots of love Sorrim x x
     
    Lara mfl 05 and agathamorse like this.
  10. Doitforfree

    Doitforfree Star commenter

    He's eighty-nine. I agree about the care home staff. They remain relentlessly cheerful and are so accommodating and caring. I am full of admiration for them. At the home my mum was in you could contribute to a Christmas fund for the staff and they all got a share, but Dad's home doesn't do anything like that. Apparently people give a big box of chocolates for them to have in the staff room, but it doesn't feel remotely enough for the amazing job they do.

    Dad's a bit more himself again. He has a bit of a melt down every so often, and it does seem to coincide with a change to routine, such as one of us being away or the current restriction on visiting. And his friend in the home had the bug which is another upset for him.

    I can very much tell myself that at least he's safe and cared for and fed, but I'd hate to have to live in a care home.
     
    Lara mfl 05 and agathamorse like this.
  11. Lara mfl 05

    Lara mfl 05 Star commenter

    Only 'bumping' this up for anyone in need of this. Though for most f us who've used this thread regularly, our 'elderlies' have all moved on. :( or :) depeding on how you view it. ;) :p
     
    minnie me, May2 and lindenlea like this.
  12. May2

    May2 Established commenter

    Actually now this is bumped up I have a friend who has just taken in her 94 year old mother in law to live with them. All this is new to her and I was wondering if you can still apply for attendance allowance like I had for my Dad about 7 years ago. There were two different levels but I know a lot of benefits are now incorporated into the Universal Credit so I wondered if this is still available and as easy to access. You used to just fill in a form without any medical checks needed.
     
    Lara mfl 05 likes this.
  13. Lara mfl 05

    Lara mfl 05 Star commenter

    Very good question May2. I have a friend who's just applied, so there certainly are forms but will need to investigate if there are still 2 levels and the criteria.
     
    May2 likes this.
  14. Sundaytrekker

    Sundaytrekker Star commenter

    I recently applied for my mother in law who has since died. There are two levels still and one form to complete. You can find the forms online. It’s on my list of phone calls to make to follow through. It isn’t means tested so isn’t linked into other benefits as far as I could see.

    A good idea to bump this thread. We have recently battled with trying to get appropriate care for mother in law. Things that were promised didn’t fall into place smoothly. It’s really difficult for all concerned. And we still have another elderly in a nursing home to consider.
     
    Lara mfl 05 and May2 like this.
  15. minnie me

    minnie me Star commenter

    You know I was just thinking about this thread a few days ago . So v good call @Lara mfl 05 ! We are lucky that both MIL ( Lazarus;) ) and my Mum ticking over.My Mum still playing mind games and refusing to go out unaccompanied. I hear the same things ( usually complaints ) over and over again which wreck my head but in the grand scheme of things .....MIL coming up to 89 and living off non nutritional diet ie meat paste sandwiches, bacon rolls and apple crumble ! Difficult to rationalise with her.
     
    Last edited: Feb 4, 2019
  16. emerald52

    emerald52 Star commenter

    I like her diet! Vitamins in the apple, protein in the bacon and meat paste, fats, sugars and carbs! So long as she is eating thats good! Best wishes to all having to cope with their oldies. You all deserve a medal and lots of support.
     
    minnie me and agathamorse like this.
  17. minnie me

    minnie me Star commenter

    Ha - made me laugh. Story behind is that SIL complained to my husband about the food scenario and my husband ' reminded ' his Mum of the food in the freezer which she seems to be stockpiling .... who then complained to his sister that she had been 'telling tales' who then in turn ' told off ' my husband. Lose lose ....sometimes I am glad I am an only child ! Cue @5 minutes ago phone call from my Mum ' I have a problem ' opening line .....who has an issue with hot water and my husband now flying over to sort !! :rolleyes:
     
    emerald52 and agathamorse like this.
  18. jubilee

    jubilee Star commenter

    the lady is most definitely still entitled to Attendance Allowance. It would only be withdrawn or reduced if she no longer met the needs' criteria, or if she moved into a nursing home where NHS paid the fees.

    In fact, if the person now looking after her is not claiming benefits and is not working (or earning under a certain amount) , they could be eligible for the Carer"a Allowance and NI credit.
     
    agathamorse, May2 and Lara mfl 05 like this.
  19. jubilee

    jubilee Star commenter

    There are still two levels based on needing help (even if not getting it) during the day or both day and night. Tell your friend to answer all questions based on the wors tt day and night experiences.
    I wish that they would change the questions from "do you need help with x,y,z!" to something like " would life be easier if you had help with xy,z? " or "Could you really do with help with x,y,z!" Every elderly person that I've helped with AA forms has at first answered No to those questions because they live alone and thus manage with no help (or struggle with no help).
    For those getting help, the allowance part funds it. For those struggling on their own the allowance pays for extra laundry costs, extra bed linen, towels, clothing etc, or ready meals. I know someone who had a second hand stairlift fitted to speed up getting to the WC and saw the AA as eventually paying the £1k cost.
     
  20. grumbleweed

    grumbleweed Lead commenter

    Totally agree with you, jubilee, I remember when I did mums AA firms, I wrote several extra pages giving examples of how she needed help. In many cases it was about the reminding to eg eat, go to the loo. It wasn't that she couldn't feed herself, or go to the loo, it was that she needed to be encouraged to.
    Good luck to your friend, May2.
     

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