Best Care For Dad With Dementia

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

  1. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,137
    Kent
    I doubt any of us could claim to `know` the actual parties and I don't think any of them would welcome unsolicited advice from strangers.

    I honestly believe this might make matters worse.

    I hope you manage to sort out the difficulties in as friendly a way possible .
     
  2. LOLWRIGHT

    LOLWRIGHT Registered User

    Aug 4, 2018
    26
    Appreciate that, I actually said now you know the parties will be reading comments in essence .. not that anyone on here now knows them.

    I am at 100 % success rate in terms of for or against ...in our favour. So it gets tough to turn round and disagree with all of this volume..These are comments from actual people going through this so hard to dispute lots of these factors. This is my rational. Thanks for your comments...
     
  3. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    #43 Lindy50, Aug 6, 2018
    Last edited: Aug 6, 2018
    @LOLWRIGHT
    This is just my opinion, but for what it’s worth...I think that printing out actual posts is very likely to make the step family feel they’ve been ganged up on. We know they haven’t, but sadly I think this is how they would probably perceive it.
    Would it be a better idea to go through and make a bullet point list of the points people on here have made?
    And I’d try to give everyone their say, however much you privately disagree- any other way will guarantee bitterness and division. In the end, though, it will be your mothers decision as she would be the one living with the situation.
    I wish you all the best, you are putting an amazing amount of work into this.
    Lindy x
     
  4. LOLWRIGHT

    LOLWRIGHT Registered User

    Aug 4, 2018
    26
    Thank you.
    It’s more like proving that all these real people are going through the struggle and are giving actual detailed opinion based on factual experience.
    Appreciate your thoughts but there is so much more to this story.
    Fact is they turned round and said to my mother that this is what everyone does, and this thread and comments demonstrate that that was 100% wrong. Also listening to real life strories from people who are living this thing should be hopefully enough for them to truly understand...
    Thanks so much
    L
     
  5. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,760
    Good luck and I hope you can make them understand why you have made this decision and do give us an update on how it turns out. Your mum is lucky she has you at her back.
     
  6. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Hi again @LOLWRIGHT
    I do see what you mean, and I appreciate how difficult it can be to get agreement on these things. I guess I'd want to suggest two things to you: one, if the step kids are not convinced of the need for a care home by seeing their dad's condition themselves, will a series of posts persuade them? And two, how much do you really need their agreement? This is your mother's decision, and thankfully it seems that she feels both supported and convinced by the very experienced people posting here on TP.
    It would be good to get a family agreement, I agree, and I hope you can......but if not, it's your mum's decision I think.
    All the best again and good luck with it all.
    Lindy xx
     
  7. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    PS Yes, in answer to your question, please do keep us posted (literally) :)
     
  8. Bunpoots

    Bunpoots Volunteer Host

    Apr 1, 2016
    3,642
    Nottinghamshire
    I'm late coming to this thread as I've been having a crisis of my own this week..

    I absolutely agree that your mum cannot look after your step dad. It would be unrealistic to expect her to even if she were a fit young person. My dad is fast losing his mobility although it hasn't gone yet. If he doesn't improve, and I think it very unlikely that he will, he will have to move into a care home. It's not what he wanted. It's not what I wanted for him. It's what needs to be done now.

    I'm lucky, my sister is supportive, my brother indifferent. I know what has to be done, as do you and your mum.

    Stay strong!
    ,
     
  9. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,453
    Kent
    I agree with Lindy...whilst you hope that they will understand and to have them on board...it is your mum's right without their approval to make a decision in your step dad's best interests and more importantly in this case your mum and her health. Good luck but both you and your mum stay strong with your course of action...keep us posted
     
  10. LOLWRIGHT

    LOLWRIGHT Registered User

    Aug 4, 2018
    26
    Thank you so much, appreciate it. Will keep you updated. If there is anything I may be able to advise anyone on after I have been through this process and can help I will. As all of you have been so very kind.
     
  11. LOLWRIGHT

    LOLWRIGHT Registered User

    Aug 4, 2018
    26
    Thank you for your words and advise, and all the very best with your father.
    Regards
    L
     
  12. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,986
    Female
    My suggestion would be that you take any phrases you have found helpful from the posts and use them 'as your own'.
    At the meeting you want to focus absolutely on what is in the best interests of both your dad and mum, and not second guess the motives of the step children. Please let us know how it goes.
     
  13. LOLWRIGHT

    LOLWRIGHT Registered User

    Aug 4, 2018
    26
    Thank you for that.
    I think it may be just to have the full and frank chat versus all the information we have anyway, and subject to how it goes, as a back up type scenario, it would be quite tough to disagree with a 100% feedback in our favour through actual real dementia carers, people with first hand real knowledge of how this is in real life.
    So will see how it goes.
    Thanks so much and will keep updated.
    You have all been such a great help..
    Best
    L
     
  14. Blondee

    Blondee Registered User

    May 12, 2018
    105
    I tend to agree that to present them with a list of posts may be counter productive and actually lead to a falling out rather than convincing them. I like the suggestion from @Sirena of using phrases from the posts ‘as your own’. I also agree that it’s completely your mum’s decision and no matter how much she realises that the best care he can get now is in a home, she will undoubtedly feel guilty and conflicted and susceptible to emotional blackmail. While they want their dad looked after, you equally want your mum looked after.
    Hopefully you can do this without a falling out.
    Keep us updated and best wishes
     
  15. LOLWRIGHT

    LOLWRIGHT Registered User

    Aug 4, 2018
    26

    Thank you very much. For sure will keep updated. All advice taken on board. TP has been a wonderful find for us.
    All the best to you and yours.
    L
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,442
    While I'm completely on board with the first suggestion, your "back-up" plan is not a back-up in the sense of getting them on board, I personally would be massively irritated to have some random person on the internet's words quoted at me. Please for your mother's sake don't do that. I understand you mean well, but this is absolutely your mother's decision not theirs. You are unlikely to get better than grudging agreement anyway from what you have said, and if they don't give it after explaining how your mother feels and her health issues, what you will end up with, I fear, if you quote people here is more likely to be all out war.
     
  17. LOLWRIGHT

    LOLWRIGHT Registered User

    Aug 4, 2018
    26
    Hi Everyone,

    I thought I would start by saying a massive thank you for all of your kind advice and input. It was all very enlightening and helped both my mother and I. I said that I would update as we went which is the reason for this.

    We had a sit down meeting to go over our findings with the step son. The meeting lasted for 4 hours and I can honestly sadly say that it was totally negative from their side. We had a list literally of all of the Cons, as could not really find any of the Pros here. We tried to explain about how bad this idea is based first and foremost of the health and well being of both my step dad, and my mother. These are the 2 absolute most important areas. Well after listing through all the dangers, exposures to accidents, infections, sub standard care package versus the 24 hour care he has now. The carnage of 2 care workers coming 4 times daily, and not on any exact timing level. The fact that our mother would find all of this so stressful and sleep deprivation would be hard. The fact that Dad falls out of bed at least 2 times per week, and we would have to call 111 or 999 depending on the seriousness of the fall. The list is endless on the Cons as we all know...

    This and more was tried to be explained but was deflected every time, and put to one side in order to get back to later, every time valid serious undisputable points came up it was pushed to one side and he carried on trying to convince basically my mother that this is what you do if you truly love someone, and that love finds a way.

    We asked him seriously what are the VALID real reasons to get Dad home and basically we got these 3 answers.

    1, Its because Dad wants to come home, he keeps saying that when he is on his own with Dad he keeps saying it, even though cant remember door number, street or even area he lives.

    2, Its because he says its what he wants as his son.,.Seems to think it is more dignified to be in his own home, even if laying on the floor for few hours. While waiting for the emergency services. Who are under massive pressure anyway as we know, so may be taking life saving support form some other poor person. Is it dignified to sit there in number 1 and number 2 for up to 4 or 5 hours at a time as mum cannot change him, move him at all...

    3, He believes that if he is back in his own surroundings he will improve, he has already tried to put him on a very restricted diet to get him lighter and thinks that he may start to be able to walk again, at what ever level,. Mum has gone a bit mad about it as its very small rations and the care home have taken his directive and he is not next of kin..Thing is with heavy on set dementia I know enough to know that if your brain does not communicate with your legs it does NOT matter what weight you are...

    So basically these are the three points which to his mind supersede ALL of the very serious valid points we tried to make, but went straight over his head. As mentioned before this is pure emotional manipulation and its even now got my poor mother thinking that may be she can do it again. This is heart breaking as they have such guilt hold over her and she is such a beautiful lady, so selfless and kind.

    I fear that after the last breakdown which was just 3 or so months ago if she decides to do this she will not survive....

    I really don't know which way to turn, he keeps saying it will be easy, and that she wont even have to do too much, change the channel for him, spend quality time with him, The most ridiculous thing I have ever heard in my life...

    Oh, and just to top it all off at the end of the meeting he said to my mum that he thinks she wants to move on emotionally...….Disgusting tactics. Obviously I am not silly enough to not understand the real motivation behind all this...

    Any thoughts and advice are greatly appreciated..
    Best
    L
     
  18. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,760

    It is time to stop discussing it with them because their motivation is clear and they have absolutely no regard as to the welfare of your mum or their father for that matter. Just tell them that it is not going to happen because you and your mum have made the final decision and that is the end of it.

    If they want their father home then it will have to be in one of their homes and they can care for him because your mum is unable to. This will probably cause a huge rift but to be honest do you really need them. They are being totally selfish and will continue to be.

    Your mum and her health are your first priority and how they feel about it is unimportant. You are being very obliging by even listening to their ideas. Put an end to it now and tell them that your decision is final and no more discussions.

    Be very strong with this. It is a final no and that is the end of it.
     
  19. LOLWRIGHT

    LOLWRIGHT Registered User

    Aug 4, 2018
    26
    Sorry if posted twice, not sure how to respond to thread, to all in essence....

    Hi Everyone,

    I thought I would start by saying a massive thank you for all of your kind advice and input. It was all very enlightening and helped both my mother and I. I said that I would update as we went which is the reason for this.

    We had a sit down meeting to go over our findings with the step son. The meeting lasted for 4 hours and I can honestly sadly say that it was totally negative from their side. We had a list literally of all of the Cons, as could not really find any of the Pros here. We tried to explain about how bad this idea is based first and foremost of the health and well being of both my step dad, and my mother. These are the 2 absolute most important areas. Well after listing through all the dangers, exposures to accidents, infections, sub standard care package versus the 24 hour care he has now. The carnage of 2 care workers coming 4 times daily, and not on any exact timing level. The fact that our mother would find all of this so stressful and sleep deprivation would be hard. The fact that Dad falls out of bed at least 2 times per week, and we would have to call 111 or 999 depending on the seriousness of the fall. The list is endless on the Cons as we all know...

    This and more was tried to be explained but was deflected every time, and put to one side in order to get back to later, every time valid serious undisputable points came up it was pushed to one side and he carried on trying to convince basically my mother that this is what you do if you truly love someone, and that love finds a way.

    We asked him seriously what are the VALID real reasons to get Dad home and basically we got these 3 answers.

    1, Its because Dad wants to come home, he keeps saying that when he is on his own with Dad he keeps saying it, even though cant remember door number, street or even area he lives.

    2, Its because he says its what he wants as his son.,.Seems to think it is more dignified to be in his own home, even if laying on the floor for few hours. While waiting for the emergency services. Who are under massive pressure anyway as we know, so may be taking life saving support form some other poor person. Is it dignified to sit there in number 1 and number 2 for up to 4 or 5 hours at a time as mum cannot change him, move him at all...

    3, He believes that if he is back in his own surroundings he will improve, he has already tried to put him on a very restricted diet to get him lighter and thinks that he may start to be able to walk again, at what ever level,. Mum has gone a bit mad about it as its very small rations and the care home have taken his directive and he is not next of kin..Thing is with heavy on set dementia I know enough to know that if your brain does not communicate with your legs it does NOT matter what weight you are...

    So basically these are the three points which to his mind supersede ALL of the very serious valid points we tried to make, but went straight over his head. As mentioned before this is pure emotional manipulation and its even now got my poor mother thinking that may be she can do it again. This is heart breaking as they have such guilt hold over her and she is such a beautiful lady, so selfless and kind.

    I fear that after the last breakdown which was just 3 or so months ago if she decides to do this she will not survive....

    I really don't know which way to turn, he keeps saying it will be easy, and that she wont even have to do too much, change the channel for him, spend quality time with him, The most ridiculous thing I have ever heard in my life...

    Oh, and just to top it all off at the end of the meeting he said to my mum that he thinks she wants to move on emotionally...….Disgusting tactics. Obviously I am not silly enough to not understand the real motivation behind all this...

    Any thoughts and advice are greatly appreciated..
    Best
    L
     
  20. LOLWRIGHT

    LOLWRIGHT Registered User

    Aug 4, 2018
    26
    Hi thanks for that, we are trying and all of this is helping.
    Having him in one of their homes is a big NO NO from my mums side as the same risks, lack of 24 hour care and all the others issues are still there.
    Demonstrating that she HAS HIS best interests at heart...
    That is the main thing with my mums health and well being..
    Thanks so much
    Best
    L
     

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