Best Care For Dad With Dementia

Discussion in 'I care for a person with dementia' started by LOLWRIGHT, Aug 4, 2018.

  1. Registered User

    Jan 16, 2014
    If it helps your mum to know you have sought views...let her know that we on TP who have cared for our loved one single handed would absolutely be right with her in support of leaving the current care home arrangement as it is.

    I am not suggesting this would happen to your mum...different circumstances...but mum became increasingly frustrated and upset by dad's illness even in the early to moderate stage...I gave her support of coursd but...with no previous history of ill health she died suddenly from a massive stroke. I will never know if looking after dad contributed and try not to think about it as it is upsetting and I can't change everything you can to keep your precious mum well and as stress free as you can.
  2. Registered User

    Jan 16, 2014
    I had posted my comment about my mum before seeing this...caring particularly dementia care takes its toll on the carer.

    LOLWRIGHT Registered User

    Aug 4, 2018

    I am so very sorry for your loss, thank you so much for the understanding of the situation and your kind advise. I will do everything I can to protect my dear mother. You have helped me a lot...

    All the very best
  4. Registered User

    Jan 16, 2014
    I was just out in the garden watering :Dand another thought came to me which may or may not be useful...has your mum organised her finance particularly but also health and welfare power of attorneys? Having the finance one with you as her attorney who I would imagine she totally trusts would enable you to act legally for her either on her instructions or if at any time she loses mental capacity which hopefully doesn't happen. As your step father declines that may give her peace of mind and an additonal level of contact ie you..that the stepchildren have to go through to at least help protect your mums part of any joint funds. It is prudent I always feel to do them anyway regardless of a difficult family situation. You don't know you need then until you do.

    It never ceases to amaze me from posts on TP where family have their eyes on inheritance before the person has died. It should never enter anyone's mind that much needed good dementia care is paramount even if it means nothing is left to inherit. The step children are getting way ahead of themselves and the will being read!

    LOLWRIGHT Registered User

    Aug 4, 2018
    Thanks again, its a whole other subject matter which is very delicate but being addressed.
    Also very complex as tied in with other things.
    Absolutely agree on all fronts however
    Hope garden feels better now...
  6. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    It is a sad fact that unless you are directly involved with the care of a loved one who is severely compromised by dementia, you have no notion whatsoever as to what that entails. Even professionals might provide advice or suggest initiatives on a 'technical' or practicable front, which is well and good. But actual CARE, person-centred, even WITH day Carers visiting, is NOT anything remotely like the reality of caring one-to one, day and night. I can only say this from the standpoiint of having done precisely this myself. The siblings or relations, as well-meaning as they might be, are light years removed from what is the ACTUALITY of CARE.

    That is all I have to say in relation to your post. Other than this. When my dear sister came from France to assist me with my own mother (Alzheimer's et al) - she being a very well qualified nurse, tutor nurse, experienced in geriatrics, psychiatric nursing, etc etc - she admitted to me, at the end of the two weeks, that it had been not only exhausting, but a real "learning curve".

    Most people would discover to their cost, in heart and mind, what caring for dementia truly means and the many, many posts here on TP are cries from the hearts of normal, capable, intelligent people, who would I feel sure endorse this sentiment without reservation.
  7. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017

    Absolutely @Hazara until a person has experienced what it is like to be a carer of someone with dementia then they haven't a clue. I could not have imagined in my previous life just how draining and soul destroying this task can be. I would not wish it upon anybody.

    LOLWRIGHT Registered User

    Aug 4, 2018

    Thank you so much for your comment here, I read it to my mother and we were both very moved. Since I posted this it has been a tremendous help to both my mum and I. She is very touched that there are so many great people out there who have been or going through the same or similar experiences in relation to this awful disease that can take the time to sit down and respond and help others as you guys are all doing.

    I was wondering how did things follow on from the 2 weeks as you mention, and what transpired ?

    Every single person we talk to, friend, family, some of the care workers, not all are saying that considering talking dad home is an absolute no no. So I decided to reach out on this forum to gauge opinion first hand from people who have or who are going through this awful process. It is literally just the step brother and step sister who are exerting all the pressure on my poor mum. She has been so low as been made to feel she is letting her husband down, and that this is 100% the thing she should be doing.

    I wanted to use some of these responses with the step family to show them that this is absolutely unacceptable. The care package is totally inadequate compared to what he has now. 24 hour round the clock professional help..

    All of you have been so kind and helpful and I thank you from bottom of my heart.
    So sorry about your poor mum.
    Very best wishes and thanks again..
  9. try again

    try again Registered User

    Jun 21, 2018
    I think the only way they can justify him leaving is if they take on the primary care role.
    No one can force that on another person.
  10. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    Chard, Somerset
    My immediate thought was money, but I am a cynic too. Love is about doing what is best for him and your mum. If the steps' won't take him (and that would be a short term, sharp lesson to them I feel), then bringing him is absolutely not an option given the description you have given. If their inheritance goes out the window then let them watch it fly... If I am wrong, then heartfelt apologies but this is just my opinion.
  11. kindred

    kindred Registered User

    Apr 8, 2018
    thank you, I so agree. I did it alone for nearly 5 years. Husband in nursing home now, and I cannot think I will ever be the same. I was broken physically and mentally. Gxxx
  12. Angela57

    Angela57 Registered User

    Jan 22, 2016
    I agree that your mum's step children have no idea of what they are expecting of your mum, and using emotional blackmail is cruel.

    Would it help to convince your mum to leave him in the home if you mentioned that your step dad wouldn't want her to suffer if he was aware that she was suffering?

    Take care
  13. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    I also think that there is likely to be a financial motive here as these two step children are clearly not putting the best interests of their father first.

    Do not let them sway yourself or your mother. What they want is irrelevant. If they want him home then they can look after him but in their own homes, not your mothers.

    As far as you are concerned your mums needs come first so stick with it.
  14. Sirena

    Sirena Registered User

    Feb 27, 2018
    I agree with all the previous comments - it sounds as if the step children are motivated by financial concerns and not by 'wanting the best thing' for dad, who will be safer and more comfortable at the care home. And they obviously aren't concerned at all about the effect this will have on your lovely mum, who I am sure wants to do her best for him.

    I don't quite understand why on returning home he would only have 4 poorly scheduled care visits. You seem to be saying the step children object to the care home on the basis it's costing £1k a week, which I take to mean he is self-funding the care home costs? If so, why not suggest that he returns home with self-funded live-in carers? Then your mum would be able to be with him but not have to shoulder the care or deal with emergencies. I suspect the step children wouldn't like that idea because of the cost, but I am not sure how they could object because after all they 'want the best' for him. I'm not suggesting this is the best option for either him or your mum, but if he does leave the care home, it would be the second best.
  15. Malalie

    Malalie Registered User

    Sep 1, 2016
    Hello. I do agree with other posters views - the pressure being put upon your poor Mum is nothing short of cruel. Stand firm - she needs you.

    I just wanted to add, with reference to what your Mum says "she wants to do the best thing for her husband as loves him dearly." If you could direct her to Kindreds wonderful inspiring and uplifting thread about looking for her dear husband who is in a care home, Mum could perhaps see that she can still provide a great deal of care, love and affection for her husband even if he does move into a home. She may find that she becomes a better carer when the stress and exhaustion of the last few years starts to recede.

    I hope that you can find a way through this without too many family rifts. XX
  16. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
  17. sah

    sah Registered User

    Apr 20, 2009

    You've had a lot of good advice. I just thought I'd add a bit more-as your mother's situation is similar to my own, although I was a lot younger than your mum (51) when my husband was diagnosed.

    I cared for husband at home for eight years- with no help from any of my three step daughters. However -once it became obvious ( to the medics and myself-not them) that he was no longer safe at home -he went into full time care where he has now been for two years.They were very quickly antagonistic and critical - but the DOLs people stated very clearly that he needed 24/7 care and needed to be in a care home-no one person can provide that level of care alone. The bottom line was that his safety and health would be at risk if he stayed home-which may be an point you could make.

    My own health did collapse once he was in care -and I'm still being closely monitored as I had a breakdown.My doctor told me -firmly-that Alzheimers had taken one life but it shouldn't take two.I totally get your mother feeling guilty and wanting to care for her husband -but I actually have more time to be his wife now. I can go to see him every day if I wish-go out on trips with the care home staff-spend time with him. He is now in severe dementia-which finally got the guilt monkey off my back as there is no way he could be at home. He has no recollection of our life together and does not fret.

    Ask the stepchildren if they would live how they expect your mother to?( Although it doesn't sound as if they'd worry) I know my husband would have been horrified if he had been aware of how I ended up living and would not have wanted that for me. He is safer where he is and better cared for-I couldn't lift him and change him -and has lots of people supporting him.

    Speak to solicitors/social workers. Your mother cannot be forced into this-but she needs a few strong voices on her side.

    Good luck!
  18. Blondee

    Blondee Registered User

    May 12, 2018
    You ve had so much good advice her but I just wanted to add my tuppence worth.
    I completely agree with what everyone has said. Your step family are being completely selfish and unreasonable. They have no regard for your mother what they want to give up her life, health and sanity to look after their dad. Yes it’s her husband but at this stage, if it was your own dad, you would have recognised the need for full time care. Shame on them that they don’t.
    Stand firm and best wishes to you and your mum.
  19. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Honestly, if it were me think I would plainly tell the 'steps' that given the circumstances, you believe they are not arguing for their father's best interests at all, but for their own financial best interests. Past a certain stage of dementia people may well have long forgotten their former home anyway. My mother certainly had, for some years before she died. If she ever mentioned 'home' (before she became incapable of any sort of conversation at all) she was referring to a childhood home where she hadn't lived since before WW2.

    LOLWRIGHT Registered User

    Aug 4, 2018
    #40 LOLWRIGHT, Aug 6, 2018
    Last edited: Aug 7, 2018
    Dear Everyone,

    Can I first start by giving each and every one of you a massive thankyou. I can’t tell you how much your comments thoughts and feelings have helped both my mother and I. After carefully reading all of your experiences and advise and taking all other considered opinon from friends, family and some of the health workers we are at that place sadly where my mum knows its just not the right thing to do, for both her husband, and herself.

    So to that end we are setting up a family meeting to outline all of our findings, and our conclusions and have a full and frank conversation with the step kids that this is absolutely not on the cards....One of your kind comments was that “Dementia has already taken one life, It should never take 2” really defined in one sentence my sentiments.

    It is so heart wrenching to watch my mother go through this process, and I personally have been feeling tremendous pressure trying to make her understand that there is no guilt here what so ever, she has literally walked through walls over the last few years with this situation, very often had breakdowns and taken to bed. She has done this selflessly as she always has been, in every aspect of her life. She is a fantastic women.

    Your comments have been such a support and validation for her, I did not realise how much this would have aided us and am so glad I reached out here on TP.

    The next stage is the meeting and if I am honest I know its going to be a real struggle to get them to see it our way. That is why I had the thought to print out all of your comments as I need to try to get them to understand the cold hard facts about this. So I wondered about your opinion on this?

    I know may be slightly unorthodox but the fact is I need as much weight as possible here to try to get them to see sense that it is an absolute terrible idea based on so many fronts. I will do anything to protect my mum from this scenario, but also, I want to try to get this to a stage where no one falls out, looks at my mum in any other negative way and then all focus on getting everyone that last bit of quality time with dad..

    I would like to may be keep you all updated as we go along, how the meeting went Etc.

    Also hope to get mum hooked in to some of the chats here...

    You have all been so kind.

    Thank you sincerely from the bottom of our hearts for all your kind words, advise and input.


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