So hard to make the decision

Discussion in 'I have a partner with dementia' started by Jean1234, Jul 21, 2018.

  1. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    252
    my OH has been offered a residential place at the care home he goes to Day care. The SS are coming on Wednesday to go through the financial side of it and they had put in a request for the first available room at the care home for him. The manager spoke to me yesterday to say a room had come available and did we want it. Someone else is looking at it on Monday . He is being given first choice. But I need to tell them Monday. It could be months before another suitable room comes up as he needs to be downstairs as he wanders all night. I expected to have to wait weeks not days and have time to get used to the idea. So I am completely in a spin. His daughter is saying I must take it for the sake of my health, I have had lots of meltdowns recently and the nurse at the support group was saying it was something I should consider when a room was available. He went there for respite a few weeks ago and settled ok and funnily enough the room available is the same room he had then. I’m told to think of it as just doing it the other way round. They have the difficult nights and the cleaning up and I can just collect him and take him out when ever I want and enjoy the good bits. It all sounds so sensible but I just cry when I think of it . I feel I am giving up on him if I do this, just parcelling him off and discarding him. Last night he was as good as gold, no yelling matches, no poo placed in unfortunate places and smeared over surfaces (although he had already done that at the care home in the afternoon ) and he was only up twice in the night and slept till 4.30. So I’m now sitting here thinking I should try to keep him home longer. Please give me your thoughts. Sorry to be so long winded.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,323
    Kent
    No you are not Jean.

    Today is the best your husband will be and if you;

    the time is right.

    It`s difficult to make a rapid decision with something as emotionally upsetting as this but if you may have ages to wait for another room the decision needs to be made.

    Once he is settled you will be able to visit and be with him as much as you wish. When this happens you will be able to enjoy his company without being worn out and exhausted.

    Sod`s Law! You know it won`t last.
     
  3. Theresalwaystomorrow

    Theresalwaystomorrow Registered User

    Dec 23, 2017
    347
    Hi jean 1234
    I was exactly where you are only a month ago and it is a terrible decision, I think we all naturally delay the inevitable.
    Firstly thou have you been through the CHC assessment ? Is your social worker good and on your side?
    This needs to be sorted first would be my advice because you will find the nhs and local authority will push responsibilities to each other!
    Also if they know you can self fund you’ve had it! They should not be asking this question until a CHC assessment has taken place.
    Good luck, it’s hard, but only you know how long you can carry on as you are .
     
  4. Jessbow

    Jessbow Registered User

    I think the time has come.

    You sill still be his wife, his advocate and his top supporter, just that someone else can do the nightshift and the grotty bits.

    It doesnt change your love for him
     
  5. PalSal

    PalSal Registered User

    Take the home and the advice. You can go visit and be with him and take him out but not be cleaning up the poo. That is where I draw the line in the sand.
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,292
    Female
    South of the Border
    The fact that the same room has become available, on the ground floor and so quickly, is the answer to all your prayers. It might seem a bit rushed, but, you need it, he needs it.

    Don't ever feel as though you are abandoning him - just look at it as if the decision you had to make eventually, has been taken out of your hands by chance, and go with it. Enjoy the good parts of his life now.
     
  7. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,507
    south-east London
    None of us want our loved ones to go into care and by the time we are actually seriously considering it, the time has definitely come.

    My breaking point was realising that I could no longer keep my husband safe and being on the verge of a meltdown. You are already having those meltdowns - so, in my opinion, I would say the time has come.

    You have done a fantastic job over the years in keeping him home with you as long as you have. You are not giving up on him - you are ensuring that he is kept safe and well.

    My husband deteriorated greatly this year and was in a secure unit for five months. He had been in a secure unit a couple of years earlier but was able to return home to me. This time around things were different. I was devastated when I was told that his disease was now so progressed that it was in his best interests to be discharged to a specialist dementia nursing home. I wanted to argue but couldn't, because this time I knew they were right.

    It adds to the mental torment when our loved ones go on to have good days. However, as experienced caregivers with years of experience behind us, we know full well that these good days become more of a reprieve from reality rather than the norm.

    Having my husband in a specialist dementia unit was as good as having him in a care home. I was able to regain my health and strength knowing that he was safe. I regained my feeling of being a wife rather than carer. Of course I still helped care for him, but I did not have to cope with the more physical and stressful side of care, I just turned up and comforted him, enjoyed his company, shared family news, played his favourite music, took him treats and helped support him at mealtimes.

    Most of the time he seemed manageable to me and, having regained my strength, the thoughts that I could manage him at home again started to creep in. However, I only had to talk with staff to know that he was very much far from being manageable. Nothing had changed, if anything it had got worse. I reminded myself that I was seeing him for just a few hours each day but they were now the ones seeing the full picture.

    I had never given up on his care, I had simply moved to a situation where I had people helping me take care of him. I was still there to speak up for him and make sure that nothing was overlooked, especially as he could not communicate his needs and I knew him so well.

    Sadly, he passed away before he could be discharged to a nursing home, but I was mentally prepared for the move. I wouldn't have seen it as any different to the time he'd spent at the specialist unit - and looking back, the help I received there was invaluable for both our sakes.
     
  8. Romanowskyj

    Romanowskyj New member

    Jul 21, 2018
    4
    Don't see it as permanent. Think of it as another short term placement. If he settles again that's great and if he doesn't then you can reassess but you have to look after yourself. X Good luck
     
  9. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,951
    Suffolk
    You will find that you are still caring for him, just in a different way.
    Go for it, you don’t know when another room may come up.
     
  10. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    460
    Chard, Somerset
    As Romanowsky said, don't think of it as permanent. This is somewhere you can visit, take OH out, and know that he is safe and sound. IMO it is an opportunity, not a death sentence and need not be permanent if, once you have had the opportunity to experience the new situation, you decide that it is not in his best interests. Once you are rested and more used to having some 'me time' you may see that this is the best option for you, your OH and your family. Sadly, we seldom have time to make proper plans and see things through as we would want them to be.
     
  11. margherita

    margherita Registered User

    May 30, 2017
    2,416
    Female
    Italy, Milan and Acqui Terme
    Lynne's words perfect.
     
  12. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    655
    Female
    New South Wales Australia
    I have only very limited experience of the troubles you are all talking about but I think Lynne said it all so well and it's a blessing that the right place has come up !
     
  13. sixy74

    sixy74 Registered User

    Jul 4, 2018
    101
    Hi
    I totally understand how you feel as Mum and myself are currently in the same situation. A week or so ago the pair of us could no longer cope with Dad and he was supposed to go to respite for 28days however he ended up in hospital.Now the plan is to move him to the care home on Thu and to see how it goes for 28days, like you I feel sick with worry that he may hate it and I also feel terrible guilt when he has a good day , however on a bad day I know it’s the right thing to do, as unfortunately we can no longer physically do what has to be done to keep dad at home. It’s a horrible decision to make but I think like we are doing you should give it a try , you can you always change your mind . The best of luck I know exactley how you feel
     
  14. kindred

    kindred Registered User

    Apr 8, 2018
    2,176
    Thank you. The decision to move my husband to a nursing home was made by hospital social workers where he was admitted after a near-fatal accident at home. They told me I could not and must not do it alone any longer. So he is now in a nursing home and I write a post about this every day - Please don't throw me away, breaking my promise. I hope to give an honest and full account of what life is like in a nursing home as I visit every day. I had all but lost faith in humanity caring for husband with all the horrible stuff we do and the unkindess all around. But my husband's nursing home has restored that and I can be his wife again. It's not always what we think. Good luck to you and you have done so well. Kindred.
     
  15. BLONDY

    BLONDY Registered User

    Oct 29, 2011
    78
    2000 MILES AWAY
    It is so easy to feel guilty, however you are doing the very best you can for your other half. He would agree with you if he could, imagine turning back the clock to when everything was normal would your OH be happy with how much you are struggling. Or imagine your best friend describing all the problems and unhappiness of coping, what would you advise them to do? I am sure you would advise your best friend to take the room.
    Kind Regards
     
  16. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hello Jean
    I have to agree with my friends on this. Distressing as it feels, the time has come for you to do what is "in your husband's best interests". You cannot continue like this and he needs additional support. This is no reflection on all the loving care you have given, rather it is facing the reality that you have done as much as one person can, and it's now time for residential care. So many of us have been where you are and we know it feels awful. Please believe me - you are NOT "parcelling him off and discarding him" Quite the opposite; you are ensuring he receives the additional care he needs. Hopefully he will settle although this may take a little time. Maybe not - some residents settle straight away! You will still be an important part of his care. A Care Plan - in which your invaluable input will be required -will need to be drawn up. You can visit him as often as you wish. We don't stop loving and caring because our loved ones go into care. When you have time, please read the posts from folk whose husbands, wives, partners are in care and you will see proof of this. It is the right decision for your husband, and for you.
    Post on here whenever you like; there will always be support here and it comes from people who know what you are going through because they too have been there. Wishing you strength in the days and weeks ahead.
    With Love xx
     
  17. kindred

    kindred Registered User

    Apr 8, 2018
    2,176
    THis is so true, in fact my OH settled in as soon as he arrived, he had made a new best friend by the time I arrived following the ambulance which took him to the home! kindred.
     
  18. Ernest

    Ernest Registered User

    Jan 23, 2018
    77
    Hi Jean1234
    I know how you feel. My OH has been in residential care since May. He had become too difficult to care for at home in our tiny cottage. Everyone will tell you that you have to think of yourself but that is sometimes very difficult to do when you have cared for your OH for so long. Do take up the room though. My OH plays up dreadfully when I visit, but the carers at his home say he is settled and not anxious when I'm not there. Perhaps like me, we have to move away from thinking for our OH's. Mine is not able to reason so it's a waste of time and emotion to try. When he is there he will be safe so you don't have that worry. I'm sure that you are making the right decision, hard as it is.
    Keep posting as I will be interested as to how things go with you and please share any tips you discover along the way. X
     
  19. Clemie

    Clemie Registered User

    Jul 9, 2018
    15
    Hi Jean123
    a huge decision and how sensible to take a step back and think about it all.
    You have had so much advice, and it is good to listen to those viewpoints and everything said
    A very sensible lady once told me 6 years ago, soon after Mum had her official diagnosis that think carefully, weigh up the pros and cons of things and favour the good common sense approach!
    This has helped me along this up and down path of caring for someone with Alzheimer's and has always been my guide when I get too emotional about the awful decisions that I'm afraid we are faced with.
    I also might be swayed by the same room, ground floor etc. Knowing he has got on well there before and the staff already know him is an enormous bonus.
    If it is a location that will be easy for you to visit and will welcome you anytime, that must also be considered (although often they say not to visit for the first few days)
    Hope you have a quiet night, with some time to think and rest
    Sleep on it, good-night, God bless
    Clemie x
     
  20. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    252
    Thank you all for all your support and advice. As one said the good times are not the norm and after those few hours when I began to think it was too soon my OH got very verbally aggressive when I tried to help him in the bathroom last night. It made me realise why we were going down this road especially as I suffered stress related chest pains the rest of the night. What would happen to him if it turned into something not stress related. So this morning I got onto the phone to the care home and said we would like the room. Seeing the manager in the morning.
     

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