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Coping with elderly parents – particularly Alzheimer’s Rant

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

  1. grumpydogwoman

    grumpydogwoman Star commenter


    Saves on making 'phone calls too. Assuming he understands he can just chat to you through it. The camera can swivel round. He can say if he only wants it pointing to the floor or a particular corner depending on his modesty etc. I assume you can have more than one if you like.

    You can check in if he has visitors. The main thing is that you know he won't be lying in agony for hours. You can ring a neighbour or an ambulance and make an assessment.

    You might hear a screech and panic but it could be that he just spilled a cold drink on his sock or it could be a bad tumble. You just don't need to die wondering.
    sunshineneeded and Lara mfl 05 like this.
  2. jubilee

    jubilee Star commenter

    I had a friend round for lunch recently. She is helping to re-socialise a woman in her 60s who has recently lost her mother. She gave up work 20 years ago to live with and support her mother. Her only break, apparently, had been two hours per week when her brother arrived to sit chatting with the mother ... to allow the sister to get the grocery shopping done!
    My friend has invited her to a church afternoon tea in the run-up to Xmas and the woman is thrilled to bits at the invitation.
  3. Doitforfree

    Doitforfree Star commenter

    Slightly off topic, but my sister got one of those cameras so she could spy on her neurotic cat when she was out. She used to call his name which just made him worse because she wasn't there!
    emerald52, strawbs and Lara mfl 05 like this.
  4. Duke of York

    Duke of York Star commenter

    Some useful information about falls here. https://mangarhealth.com/uk/news/frequently-asked-questions-about-falls-in-the-elderly/

    I can tell you from my experience of working with elderly people that there is nothing more distessing for them than to fall and be unable to get back on their feet again on their own.

    It's impossible to prevent a fall caused by a medical condition that impairs the ability to balance, but it is possible to both reduce the risk of a fall or being injured by it by taking sensible precautions.

    Home adaptions such as fitting grab rails can be provided by social serices. The housing association I work for will also fund things like this, but neither are able to help unless it's asked for.
    agathamorse and Lara mfl 05 like this.
  5. Lara mfl 05

    Lara mfl 05 Star commenter

    Indeed helping our elderly retain their mobility and balance is one of the essentials. Especially having heard of an elderly lady who fell in the week, sustained a brain injury, which was said to be 'life-limiting' and have just heard she died yesterday.
    agathamorse and Duke of York like this.
  6. Doitforfree

    Doitforfree Star commenter

    My dad has a new lady friend in his home and is so much happier. Apparently he's been dancing and singing which he's not done for ages, and more or less kicked my sister out today because it was tea time and they have tea together. I'm so pleased.
  7. grumpydogwoman

    grumpydogwoman Star commenter

    There you go!

    Also encouraging to others. OK, the elderly person firmly believes home is the best place for them. But none of us really knows what we might get out a change of scene. We all fear change but it can turn out to be for the good.

    So carers shouldn't feel guilty. What if the food is way better? Or it's lovely and warm? Or there's congenial company? Things can work out better than expected.
    agathamorse, nizebaby and Lara mfl 05 like this.
  8. Lara mfl 05

    Lara mfl 05 Star commenter

    Indeed, much depends on personality.
    Having been widowed for many years, Mr L's Gran who used to visit a local Residential Home on a regular bais, suddenly informed the family she had previously 'booked a place', which had now been found and she was moving in permanently the next week.
    She really loved it there, despite sharing a room - in fact I think she enjoyed the company and all the activities on offer. She was of course active, and 'mentally all there', which no doubt helped.
    agathamorse and nizebaby like this.
  9. Duke of York

    Duke of York Star commenter

    I learned today that one of my residents passed away in hospital yesterday, just a month before her 95th birthday.

    She was quite sweet in her way, but her general health was letting her down. Poor mobility, deafness and severe macular degeneration all added to her dementia.

    She was quite sweet, so far as I was concerned, but had an unfortunate habit of upsetting her neighbours by saying the wrong thing, at the wrong time.

    Her husband had a senior job in the civil service, so they had a nice home at one time, but his health deteriorated and he had to go into a care home. She found him a nice one, but it was expensive and some distance from where they lived, so she sold the house to pay for his care costs and downsized to the flat on my estate.

    About three years ago, she made a decision that she would be better off in a care home herself, put her flat on the market and found a buyer, then had the lady who she initially took on as a cleaner, but ended up being more like the daughter she never had, take her round care homes that could accommodate her, but none met her expectations, based on the care home her husband went into and there was no way she could afford to spend the rest of her days in that one, so she pulled out of the sale and resigned herself to spending her remaining days in her flat with carers coming in a few times a day, for as long a period as social services were prepared to fund.

    This began with four half hour stints where a carer would help her out of bed, have a shower and get dressed, maybe have time to make her a cup of tea, if there wasn't any hiccups, another to cook her a hot meal for lunch, a further one to sort out an evening meal and a final one to ensure she had taken her medication and put her to bed.

    Her care package was reviewed at some point, with a Tory-inspired social services manager deciding that because the cleaning lady kept her freezer stocked with ready meals and because she had a microwave to cook them in, there was no need to have four visits per day.

    I have no idea where they find people like this outside those who vote Tory and are happy to follow whatever IDS thought was OK. Who in their right mind would never consider whether an elderly person with severe macular degeneration would be able to read what frozen ready meal pack contained, let alone be able to read the cooking instructions?

    That's without the dementia and the probability she'd never remember whether or not she'd had anything to eat.

    When I found out from the cleaner how her care package had been changed and it didn't look she'd had a meal for a few days, I had a blazing row with social services over it, after I'd waited an hour to get someone to answer the sodding phone and the original care package was reinstated.

    My job description is vague in the extreme in whether of not it's my responsibility to get involved in a situation like this. All the training I've had suggests I ought to look out for vulnerable people, but it isn't part of my contract of employment. I choose to get involved when I see someone needs help; and I don't sod about speaking to receptionists and tick box merchants. I find out who is in charge and give them an earful, they didn't want, so stuff gets done.

    Sadly, not every estate manger I've met has the ability to charm the nuts off the trees to get past the receptionists as I've leaned how to be able to from the time I spent in sales, or be able to make those further up the food chain worry whether their nuts are safe, when I put pressure on them to get their act together. A skill I learned when running a business and didn't take many prisoners if things went wrong.

    This lady had no family. She wasn't quite Hyacinth Bucket, but it might help if you imagine her to have some of Hyacinth's traits when I tell you that unlike most of my other residents, who welcome every opportunity to engage with each other, they were polite and kind with her, but reluctant to engage.

    She spent her final years desperately lonely, seeing only her carers, her cleaner and me, but none of us were able to spend the time in her company she craved.

    I can't tell you how many times she told me that she wished her life would end, or how many times I had to call an ambulance for her after a fall. I can't tell how many times her health became so poorly that an ambulance rushed her to hospital against her wishes, the hospital patched her up and sent her home again.

    Over the past few weeks, her cleaner visited her in hospital as regularly as she could. Either daily or every two days and reported back to me that end of life care in a hospital rather than a hospice is about as miserable an existence as you can get.

    The cleaner told me how she tried to feed her, but had to stop when they came round with the medications, which the poor dear struggled to swallow and by the time they managed to get them down her, the dinner had gone stone cold.

    The honest truth, is that if we had a pet suffering misery like this, we'd put the poor beast down as an act of kindness, but humans have to endure the misery until their final breath.

    Nobody ought to endure such a life. I don't want to be guilty of bringing politics into a lovely thread like this, but it's worth thinking about whether you'd like your life to end in a similar way when you next vote.

    I could write paragraphs upon paragraphs about the things we discussed over the years I knew her. I never told her what I thought about the things she valued, the attitude she had that her former life, somehow made her superior to the others she ended up with as neighbours.

    She was someone I treated exactly the same as everyone else I keep an eye out for, when the system would prefer to ignore their existence after they cease to pay tax or reach the point in life that they are no longer able to vote for it to be any different.

    Her situation might be the same for everyone of us, or it might be even worse for us when our time comes.

    For all I know, it might already be worse for similar people who live on estates like the one I manage, but don't have someone like me; a dog who won't let a bone go, until that call on the dog and bone with someone who understands I won't be burying that bone in a hurry if they don't get their act together.

    Does it honestly have to be like this?
    agathamorse likes this.
  10. Lara mfl 05

    Lara mfl 05 Star commenter

    In answer to your question DoY I sincerely hope things will change soon.
    This is exactly why we ned to think ahead and have our policies legally written down as to what we wish. (Even if they are ignored we will have made our wishes known and in the future govts may take more heed.) I know Drs. Emergency services and I all agreed in the end it was pointless calling out emergency services everytime she has one of her comatose episodes, as they couldn't actually do anything but ensure she wasn't in pain and see if she awoke. The paramedics were better 'not attending' and using their time to help people who could actually be saved.

    Bless you for all you do for your residents. As you say many elderly people are not nearly so fortunate.

    As you say having to spend her last days in hospital, against her wishes is appalling and you're right it is miserable.
    Last edited: Nov 15, 2019
  11. grumpydogwoman

    grumpydogwoman Star commenter

    @Duke of York

    You're doing great work. An unsung hero frankly. A champion.

    Does it have to be like this? Until we all confront the issues and plan to change? Then it will remain the same.

    I was going crazy on the 6-bed ward after my op and it became immediately obvious the advantage I (and some others) had over the majority of patients. If you're literate and have an active family (or a Duke) to advocate on your behalf then you're off to a flying start. Live alone? No close family? Not clued up about your condition? You won't fare so well.

    Answering the 'phone? Yep, the 'phone on the ward just used to keep ringing out. The patients' call-bells went unanswered too. Not enough staff. And the ones who have least time for you? Oddly it seemed to be the trained nurses. I think they are in the unenviable position many teachers find themselves. They are the ones who have to input all the data. Whereas the unqualified staff have more time to care.

    Advances in medicine keep us alive for longer and in poorer states of health. We don't invest in sufficient staff. We also don't confront end of life honestly and allow people to die with dignity.
  12. sunshineneeded

    sunshineneeded Star commenter

    argu@Duke of York, you're doing a wonderful job. I wish you were one of the many people I am in contact with about my Dad.

    He's still at home, but the situation is pretty awful and worsens daily. We do now at least have a care company we trust - they go in three times a day. He has also started (at last) on Alzheimer's meds and anti-depressants - he's only been on them two weeks, so we hope they will have some effect soon. He hardly eats or drinks and can barely stand now. We have various 'aids' at home to help him - walking frame, grab rails, commode, etc - but it's all so sad. He has refused to wash, shave or clean his teeth for several weeks now; the care agency have referred him as an 'urgent safeguarding issue' to social services in the hope that they will provide someone with the skills to persuade him. He also refuses to wear any clothes - I think that's because he can't manage them when he needs the toilet - at the moment he's still making it there in time most of the time. He's becoming very argumentative and doesn't always recognise us now.

    I'm still travelling the 100 plus miles to see him every weekend, as is my sister. He still does understand when we try to discuss moving him (into a home, which would now need to be a specialist dementia facility - we've found one) but becomes very, very upset and says he's never going. On the advice of the care agency manager, we're going to ask this week for another social services assessment. If he is deemed not to have mental capability, we can then invoke the health and well-being Power of Attorney and find a way to move him. I know that the present situation can't carry on indefinitely.
    grumpydogwoman and agathamorse like this.
  13. Sundaytrekker

    Sundaytrekker Star commenter

    That is so sad and worrying, sunshine. I have no further advice as you’re pursuing every avenue you can. Just sending you support and best wishes.
  14. Lara mfl 05

    Lara mfl 05 Star commenter

    So sorry your Dad's conditioning is worsening fast. It could be that it's too late for the meds to have the best effect. It certainly was with my Mum and they seem to work best when in the early phases and didn't work effectively for more than 18 months we were told anyway. Hopefully they've improved since then. Prunella Scales seemed to do well for many years on whatever med she was on compared to my own mother's rapid deterioration.
    Must be so wearing for you travelling that far every weekend and that can't continue long-term as you well know, so I trust that SS assessment happens soon.
  15. Doitforfree

    Doitforfree Star commenter

    My dad (Lewy Body dementia, living in s care home but not specialist dementia) had had three sessions the last three days of getting very angry, turning over furniture and throwing things. This has happened before but always as isolated and less prolonged incidents. The manager has called the crisis team. What can we (and should we) expect from them? He's just started on an anti depressant which will take up to a week to be fully effective, if it fits anything. It feels as if things have taken a big step down. We've known he probably couldn't stay where he is forever but he's going to find it extremely hard to get used to somewhere new. He is registered blind which makes everything much harder for him. What can we expect from here and is there anything we should be doing, apart from scoping out other homes, which we should probably have done already but you know how it is...
    Lara mfl 05 likes this.
  16. lindenlea

    lindenlea Star commenter

    So very sorry. No informed advice I'm afraid but looking for a home with specialist support sounds like it is the next step. Very hard for everyone involved.
  17. sunshineneeded

    sunshineneeded Star commenter

    @Doitforfree, so very sorry to hear that your Dad's dementia is getting worse. It's such a worry, 24/7. We know that if we had managed to persuade our dad to go into a care home when he first became frail, we would now be having to move him - the lovely home we'd found had no dementia facility. As it was, he flatly refused to even consider it, so he's still.at home with specialist dementia carers. But it's not going to be enough for very much longer (unless we have 24 hour carers). We have found a dementia care home we feel happy about and are working on getting him there.

    On a different note - I have been told that if you are or will be self-funding in a care home - you pay for your care, but if you have to have specialist dementia care (which is considerably more expensive) then the NHS should cover the difference as dementia is an illness. I haven't looked into this yet and I'm very sure it wouldn't be easy to organise!
    agathamorse likes this.
  18. littlejackhorner

    littlejackhorner Occasional commenter

    On a different note - I have been told that if you are or will be self-funding in a care home - you pay for your care, but if you have to have specialist dementia care (which is considerably more expensive) then the NHS should cover the difference as dementia is an illness. I haven't looked into this yet and I'm very sure it wouldn't be easy to organise![/QUOTE]

    My mother in law was self funded but because of her dementia and other needs she was assessed as needing nursing care. This meant that the NHS paid for the nursing care element which was I think £155 a week. My understanding is that it needs to state this in a care plan in order to trigger this extra funding. There is also a possibility that the assessment rates the nursing care needs so high that the NHS meets the total cost. This is very difficult to get and when I asked for reasons why my mother in law was turned down for this I never really got an answer.
    agathamorse likes this.
  19. littlejackhorner

    littlejackhorner Occasional commenter

    Sorry previous post meant as a reply to @sunshineneeded but something went wrong with my post!
    agathamorse likes this.
  20. Lara mfl 05

    Lara mfl 05 Star commenter

    As litlejackhorner says, currently it is very hard to get funding for dementia care, as it is still not officially classed as an illness. You are likely to be offered the assessment for full funding, but unlikely to qualify, but will instead be offered the Nursing Care contribution. Strangely the people I've known who have been successful, because you need 1 Priority need and 2 High needs are people who are violent. Cognition and Behaviour are in the same section, the only section which can qualify as a Priority Need, so it's either or. :rolleyes: People who are violent and have difficulty in the other high scoring areas ( & not every area is able to score High) are the most likely to qualify but somehow you go in for the assessment (done every year) and then find somehow the SS people will always 'downgrade' their needs.
    agathamorse likes this.

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