1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,949
    Mum's physical health has deteriorated over the last six months, we have had two big crises which have involved getting her to emergency respite, and my sister and I have been extremely worried about how Dad is managing, as mum can't really walk any more. Some days she can't stand up.

    Mum is in respite right now and a meeting was held yesterday about the way forward, Dad accepted after the last emergency admission on Christmas Eve that he now needs more help at home - he has none. Just sitters twice a week and day care twice a week.
    My sister and I have done emergency visits, we visit regularly we ring dad every day, we have totally supported mum going home even though we think she is better cared for in the lovely care home she goes to for respite. We have listened to what dad wanted all through all of this and done our utmost to make sure he gets what he wants, and finally thought we had made the breakthrough with him accepting people to do some physical care for mum at home.

    I have reached the limit of compassionate leave, have had endless unpaid leave and have abandoned my husband so very often. (parents live over 3 hours away from both me and sister - the sister who lives a tiny bit closer can't deal with it mentally)

    Anyway Dad has turned down all assistance as he doesn't see how it would work. He has refused on the grounds that it would mean another assessment for chc for funding for mum and that she is certain to lose funding this time (we know this)
    I would welcome the loss of funding as in my opinion mum is more than able to pay for her care, and the funding should be going to someone who can't.

    When I spoke to dad last night my husband just slumped in the chair in dismay at his decision and I feel as if the stuffing has been knocked out of me. I did not go to the meeting as dad didn't want me to, I have been ill over Christmas and would have needed more time off work. I wonder whether to ring the social worker? Or is it ok to say I have just had enough. I can't leave Dad unsupported but I can't carry on like this.
     
  2. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    Parents. eh :rolleyes:

    Sometimes you have to walk away and let the crisis happen. Call it tough love.

    After three years of trying to improve my MIL's quality of life and alert my OH and his sisters to the squalor and malnutrition she was clearly subjecting herself to (heads in the sand) I eventually realised I had no choice other than throw in the towel, sit back and watch things play out. I'd had enough of being viewed as Mrs Voice of Doom from all sides.

    I couldn't even convince them that they needed to get an LPA drawn up, which was ridiculous as my OH had managed my mum's finances for me for years via an EPA. They didn't want to 'upset her', so I had to bite my tongue when the inevitable crisis occurred and they're all running around like headless chickens.

    But ultimately it wasn't my mum and it's not your wife. The buck stops with them.

    Your dad clearly has capacity to understand there are consequences to his decisions. As long as these are explained to him, then he's the one who will have to deal with them. You have no real choice other to step back and allow things to unfold. If he asks for help, then tell him you think she should be in a care home and leave it at that. As soon as you parachute in to help, you're back to square one. He DOES have a solution, even if he doesn't like it.

    It seems some people need to be standing on the cliff edge before they look for a way out, whereas I guess you're more like me, looking for a safe route off the mountain long before the crisis occurs
     
  3. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    Agree. It's totally frustrating and agonising to see them doing it.
     
  4. Benrese

    Benrese Registered User

    Apr 12, 2014
    185
    Lancashire
    So frustrating!! Stuffing knocked out everywhere! I totally feel for you.

    It's true though, in most cases where there is refusal to accept help, a crisis will have to happen. It's awful as you know in your heart that dad would NOT want that to happen either. You see, if he doesn't act, he will lose any control he has now. That is the absolutely bottom-line point he has got to get.

    Dad, I have researched and spoken to many, many other carers, men just like you. I have found that if you don't accept the help and something critical does happen, you may lose the chance to take care of Mum, as social services CAN and WILL have her removed. This is not something any of us want. Consider accepting the help, so that you can remain Mum's main carer. I am only telling you the truth, as I would hate for this to happen to you and Mum.
     
  5. Soobee

    Soobee Registered User

    Aug 22, 2009
    2,734
    South
    oh yes, I remember this happening!

    I was swearing that they were so pig-headed not to accept help, and I ended up going round all the time (but it was only really for a couple of weeks) and clearing up mum's incontinence and giving dad tea when he could barely lift his head off the pillow.

    Mum refused to have anyone in the house and dad was ashamed that he could not manage things himself due to illness.

    To be honest, it was 6 years ago and I can't remember what changed, but eventually they let people in to help. I think dad could see that I couldn't deal with it - maybe the social worker had a word or maybe he dealt with it all himself again when he got a bit better.

    I think you need to be honest with your dad and say "I am unable to do this any more, I will lose my job and my marriage if I carry on and I know you wouldn't want that. Get the help you need or I will have to step back for my own future."

    Good luck.
     
  6. Jessbow

    Jessbow Registered User

    I think its time for tough love.

    I'd be saying

    ''Dad, either you have help for mum at home or she'll have to stay in care full time''

    She is being cared for at the moment, and I think that gives you leverage- How long will the respite facility keep her?

    Are they on your side? -that will help a lot!

    If your Mother currently receives CHC funding, what is it used for if she doesn't have carers and isn't in a residential placement?
     
  7. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,949
    Useful feedback, thank you.

    I can't express disagreement to my dad, it's a thing we grew up with, he has everything his way and this won't change. I know it sounds mad but families can be strange places
     
  8. Jessbow

    Jessbow Registered User

    Then you'll just have to step back and watch the fall.

    People change and sometimes, especially as we get older, we have to do any say things that we would not have dared in the past.

    You have to either step up, or step back, you cant continue to 'hover' as you are at the moment.
     
  9. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,949
    Mum's funding is used for 2 days at day care each week, 2 lots of sitters so dad can get out, and regular respite care. She's in respite for another week, went in as an emergency on Christmas Eve. Dad regularly cancels the day care and sitters. This bit him on the b*m before Xmas when he was ill as he had mum to care for full time with no day care or sitters.

    I am thinking of teling him that my husband is not happy that we never see each other any more, he will understand that as he didn't like it when my mum went (twice) to visit her own mother with dementia in the eighties. Dad was annoyed when I told him that I was working at the weekend (just gone) and said he thought that nonsense had stopped. (I am a nurse and work alternate weekends)
     
  10. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,949
    Jessbow, you are right, I am hovering, I hadn't thought of it like that.
     
  11. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    H'mm, it sounds as if its his way or nothing. He might be your dad but his 'wants' don't trump yours or your family's.
     
  12. Benrese

    Benrese Registered User

    Apr 12, 2014
    185
    Lancashire
    I really do understand how our "Family Rules" run deep and strong. These are those unspoken things such as never questioning parents' authority, etc.

    However, it isn't to say that sometimes these rules need a bit of a tweak. Even if your Dad gets insane with anger at your stating what you need to state, it will not change the facts of what will eventually happen.

    But of course, it really must be a personal decision of how far you go and what you decide to say. You can only work within your own comfort zone. To tell your Dad the truth is to step outside of that, with the understanding that it is for the love of both parents. I guess it's sort of like what we do with our little ones, sometimes we have to draw the line so that they can be safe.

    I hope things can smooth out and that your Mum can stay safely and happily at home with your Dad.
     
  13. garnuft

    garnuft Registered User

    Sep 7, 2012
    6,585
    Similar situation with my in-laws, Sister M but in our case it's MIL who has always ruled the roost, it is FIL who has dementia.
    He is having bowel incontinence problems but every suggestion falls on 'deaf' ears.

    She doesn't/can't help FIL with these issues and we are worried about his dignity as well as his health.

    OH worships her, he is an only son, every suggestion he makes, learned by the long, hard struggle with my Mam, gets batted into the long grass.

    The difference this time, as opposed to my mother, is that I am not willing to step into the breach, still reeling from Mam's care and the ongoing care of my son. He works long hours and these facts are what will drive either a crisis or a compromise on her part.

    He has never challenged her in his life but is finding that he will have to do just that in order to ensure his father has the care he needs as well as her, she is 92 and can barely walk.

    Step up...? I think you've tried that, perhaps you could try to be more assertive but only you can know if you CAN and also whether or not it might make things worse.

    Step back...? I think you may be forced to do that. It will be agonising for you either way but you are at a crossroads.

    Best wishes which ever direction you choose. x
     
  14. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,949
    Oh dear, Garnuft, I don't think I could face this twice in rapid succession, I have a dodgy MIL myself who is currently writing nasty letters to all her neighbours criticising their neatness and putting them through their letter boxes, but it's not dementia just total self centredness, I leave her to my husband these days.

    I have stepped up in the past, it was due to my persistence that Dad got respite and day care and sitters for mum, it took a year of non stop work on my part. I don't want to do this again, I am sorry about this, and sorry that after all my previous efforts he does not trust what I have said now. I do understand that he really cares about my mum and it has always been that way

    I will speak to my dad again about this, when I have calmed down. thank you Benrese for your comments, they have reminded me of something from that book "i'm ok, you're ok" in which they talk about the "age 3 fear", I am an adult and don't have to have the same fears as I did when I was a child.
     
  15. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    Oh SisterM, I really feel for you.

    My own dad is a lovely man - the absolute best, in fact - but I too find it difficult to express my feelings to him with respect to the difficulties I can see him bringing upon himself, or to tell him when I think he's getting it wrong. He's my dad, he tells me what to do, not the other way round. He's my go-to Mr Fixit - he is older, wiser, and always knows what's best. This is how it's always been - and to be honest, because he's the one who is living 24/7 with my mam's dementia, I have the utmost respect for his choices. I don't live with it, do I? Who am I to criticise?

    But it's so very, very hard to watch someone you love grind themselves into the ground out of pure devotion, when you know that there are things that just might help but that they refuse to do. I honestly feel that I've more or less lost both of my parents to this vile, disgusting disease even though it's only my poor mam who is the 'sufferer'. Sadly, she's not the only victim.

    Sorry for the rant, I only intended to say how much I understand how you feel :eek:.

    Big hugs xxx
     
  16. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,108
    hertfordshire
    Hi, this was me around 18 months ago, I too found it hard to go against my Dad but he was drawing me into his role of main carer more and more and when he became ill and hospitalised I had to go to their one bed bungalow and stay all day and night with my Mum for three nights, it was a nightmare, she didn't know who I was, she was up all night, she came at me with a knife, luckily my husband was there too and between us calmed her down, then when Dad came home, I was there helping every morning, I would go home and within 10 minutes he was phoning me begging me to go back because Mum was playing up, I had to give up my job to help them, eventually I had to give him an ultimatum, he had to agree to Mum going into permanent care or I would no longer help either of them, I told him how it was now affecting my own health and my marriage, not that my husband was anything more than supportive, I also said how worried I was that I was going to lose him too having already lost Mum to this disease. We both ended up in tears, I went home, he phoned 10 minutes later said how sorry he was and that he appreciated all that I had done for Mum and him and agreed that it was time now as he could no longer cope with Mum. I hated that I had to do this, but am so glad that I did, Mum is better cared for now, not that I say that to Dad, but he definitely looks better, even though I know he is still hurt at being separated from Mum, but we are getting there. Hope you can get through to your Dad xx

    Ange
     
  17. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,949
    Thanks Ange and CG, it is good to know I am not the only person who has had to deal with this but also not good because it is a shame anyone has to be torn like this. I had thought Dad had realised that the time had come when it was all too much for him to cope with, and I am prepared to support him having mum at home but only with the proper help. I have even tried to get him to get the bathroom door hung opening outwards so we can get a wheelchair in there, I had hoped for a wet room conversion but no, the avocado bathroom suite is staying.
    I had got him thinking an electric bed that can sit mum up on her bad days would be a good thing but not any more.

    Dad thinks that mum is going to learn to walk again while she is in respite. He's not really thinking straight. CG, I think that there is going to be an accident while dad is trying to make mum walk and they are both going to go down to the floor and be unable to get up.
    That's another thing, I have tried to get him an emergency alarm button to wear but again.....no.
     
  18. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    Unfortunately, SisterM, that might be something you just have to live with.

    My dad isn't in the best of health - various smaller niggles and some bigger issues such as having already had one heart attack, and also (unrelated) wearing a pacemaker. He has also recently told me that in looking after mam, he often forgets to take some of his own medication :eek:.

    I live in fear of him collapsing for whatever reason. If that happened, mam would have no idea what to do or how to do it, and the image of her wandering distressed through the house while dad dies on the floor haunts me.

    Of course, if he lived alone and collapsed then no-one would be there to do anything either. But I can't bear the thought of mam being there if it happened.

    I've tried to explain this to him but he brushes aside my concerns. His need to have mam with him simply overrides everything else.

    And yes, he has an emergency button. However, he keeps it safely tucked away in his bedside drawer because when he wore it he kept setting it off accidentally :rolleyes:. So unless when he collapses he can manage to drag himself over to either the main unit or his drawer, he's stuffed.
     
  19. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,949
    I've already had a time when I had BT trying everything they could to get the phone to work as I was worried because dad wasn't answering. (they were very helpful and kind about it). To be honest I think I ring every day just to check that Dad hasn't had some awful accident.
    I think we have quite similar dads, wonderful that they care so much about their wives but so self sacrificing. I hope your dad takes his meds and keeps well and safe.
     
  20. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    Yes, I think they are similar :). Lovely but very frustrating at times! I speak to him just about every day too. If I don't, I just imagine him lying prone on the kitchen floor :(.
     

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