It can be done. (caring at home)

Discussion in 'I have a partner with dementia' started by Eleonora, Dec 27, 2015.

  1. Eleonora

    Eleonora Registered User

    Dec 21, 2012
    Abingdon Oxfordshire
    I had my 77th birthday this week, and my husband, Michael, to whom I had been married for
    54 years, sadly died last month. He had just had his 90th birthday.

    When he was first diagnosed with Alzheimer's, (Which later became Mixed Vascular Dementia and Alzheimer's.) I promised both myself and Michael, that I would nurse him, at home, until the very end.

    Thank you Talking Point for leading me, gently, through the various stages, and making it possible for me to have a pretty good idea of what I might expect! :confused:

    I now get great comfort from knowing that I did manage to care for him for 9 years, until his death, at home. He was, as usual, still holding my hand.

    He knew who I was for most of the time, except when UTI's were affecting his poor mind; and we were able to sleep together, holding hands, until the last three days of his life, when a hospital bed was installed in our sitting room.

    Thanks to his Carers Allowance, I had very good support from a Carers Agency; and even had 3 hours, twice a week to get out to shop.
    I know from reading other posts that that is not always the case.
    A Councillor from Age Concern was of enormous help with claiming every allowance to which we were entitled. I cannot thank her enough.

    I know I was very lucky, but possibly it might encourage others to know that it can be done.

    Hugs to all T.P. members who are still struggling to care for those they love.
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    I'm so sorry about your husband Eleonora but I'm glad you were able to keep him at home with you as you both wanted.
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    Lovely post Eleanor. I agree that it can be done sometimes - we looked after my Ma at home too and i have no regrets but it was a rocky road xxxxxxxxxxxxxSorry to hear of your Michael's death. Thinking of you xx
  4. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    Thank you for sharing this Eleanora.

    I am sorry for your loss but heartened that you were able to care for your husband at home right until the end.

    I sincerely hope that I will also be able to achieve this for my husband too. I also know that things can change and plans need to be flexible - but my aim, if possible, is to see this through at home.

    It is good to know that it is possible xxxx
  5. Sue J

    Sue J Registered User

    Dec 9, 2009
    Eleanora I am sorry for the loss of your dear husband but I too am heartened that you were able and enabled to care for him at home. xxx
  6. Slugsta

    Slugsta Registered User

    Thank you for your lovely post Eleanora. I am so sorry to hear of your Michael's death (my Michael is my son, not quite 30 yet) but glad that you were able to keep him at home with you and still be holding his hand at the end.
  7. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    I am so sorry for the loss of your dear husband, Eleonora, but glad that you were able to fulfil your wish to care for him at home to the end.
    Wishing you comfort as you mourn him, and the strength to go forward without him. xx
  8. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    How wonderful for Michael that his dear wife was holding his hand to the end. You have cared for him so lovingly. Thinking of you at this very sad time, you must miss him so much. Take care.
  9. pamann

    pamann Registered User

    Oct 28, 2013
    Sending you my sincere condolences, how brave you were to look after your husband until the end, well done Elenora
  10. Padraig

    Padraig Registered User

    Dec 10, 2009
    I'm so pleased to learn that you managed to keep your husband at home and to provide the best possible care one could wish for. Your post may also inspire others to learn that it is possible and that from personal experience the rewards are ever lasting.
    To feel wanted and loved is the best gift to give anyone suffering with Dementia. Peace be with you.
  11. LadyA

    LadyA Registered User

    Oct 19, 2009
    But Padraig, even those of us who ended up, not through choice, but for the good of our loved ones, having to go the nursing home route - we didn't put them in nursing homes because we didn't want or love them. We did it because we were, through their illness causing aggression & violence or through lack of support, lack of sleep etc., unable to give them the level of care they needed by ourselves. My William's health improved enormously when he went to full time care, and the staff there never experienced any aggression or violence from him - he loved having uniformed male staff to do his personal care. The ideal scenario is to care for people at home - and it's marvellous when that's possible. But it often isn't.
  12. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    It can be done but sadly there are times when it isn't the best thing for either the pwd or the carer/family.If there is violence for example.Or chronic sleep deprivation.Or young children to consider.Or a job to hold down.Well done to anyone who wants to care to the end and is able to manage it.But if you don't or can't it's not a failure.
  13. Beannie

    Beannie Registered User

    Aug 17, 2015
    East Midlands
    Thanks for that

    Hear Hear. Ideally my 62 year old husband would be still at home but he has a double diagnosis of Advanced Parkinsons Disease and Alzheimers Dementia. I am only five foot and he is five foot eleven and weighs 13 stone!! I cared for him at home as long as I could but after several falls involving ambulances being called and him becoming disorientated around the home and having stairs I made the decision along with family members that a care home was for the best. His health has improved and he now looks quite well instead of a wizened old man. I felt terrible guilt for a long time and whilst I admire people who can keep going at home sometimes it is not possible and I refuse to carry the guilt anymore as I know I did what was for the best.

    The LA also agree as they are now part funding us after a lengthy battle.

    So well done to those who can manage to the end but to those who cannot do not allow the guilt to beat away at you, just try to enjoy the times spent with OH to shore you up in the years to come. A peaceful New Year to you all.
  14. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    #14 sleepless, Dec 28, 2015
    Last edited: Dec 28, 2015
    to quote Lady A --

    "The ideal scenario is to care for people at home - and it's marvellous when that's possible. But it often isn't."

    "Possible" is the key word I think. As we know, no two people with dementia are alike, and their symptoms vary markedly. My husband is still at home with me, and I put that down as much to luck (mild-mannered, no behavioural problems, a stone lighter than me etc) as much as, or more than, anything.
    Eleonora was blessed to be able to care for her husband at home until his death, and I pray I will be as blessed, but surely no-one who reads this forum would ever take that for granted.
    So many members of TP have struggled on before realising that their spouse would actually only receive the care they require in a home, and I salute every one of them for taking the courageous decision to give up caring at home. It must be so hard, such a heartbreaking step, but they do it, often more for their spouse's sake than their own exhaustion.
    If I keep my husband here until the end I will feel I have been lucky, and not that I have cared more than anyone else.

    Eleonora has been honest in saying that she was lucky, and her post is inspiring to all those like me who hope for the best, so thank you Eleonora.
  15. bemused1

    bemused1 Registered User

    Mar 4, 2012
    I agree with sleepless that there is a lot of luck. Like her we don't have behavioural issues , the major problem is his physical health. But we also have carers to help, without whom I would not manage, although its taken a,long time to sort that situation out .
    I salute every person who has found residential care for their loved ones. I know , especially after the level of care my husband has needed for the last three weeks that I would not have a worry free moment if he was in residential care. Such brave,people, those who find the best care they can when that decision is necessary and those of us who keep going as long as we can.
    I hope I will be able to give my husband peace as he wants it until the end of his life,but who knows.As sleepless said I will have been blessed.
  16. Padraig

    Padraig Registered User

    Dec 10, 2009
    It seems I've been misunderstood. Like everyone else I'd reached a stage where I believed I could no longer cope looking after my wife. As others said I placed her in a Nursing Home. Our home and land was too large (six bedrooms, three bathrooms, two kitchens, some acres of land plus a two bedroom cottage) to maintain in addition to looking after my wife. She was wheelchair bound, could no longer speak, required feeding and her incontinence pads changed. I accepted professional advice and placed her in a NH.
    Just as each case of Dementia differs so also do circumstances and the personalities of carers. In my case the daily journey to spend eight hours a day at the NH and observe her give up hope took its toll. I fed her meals, changed her pads and washed her on my visits. It seemed only common sense to downsize and make our new place fit for purpose to take her home.

    There have been many occasions in my life when I've been told something was impossible, but I just had to learn for myself. Presently I'm recovering from internal injuries after a fall, but in this next week I'm hoping to discover if I can continue with my morning runs. Thank God we're all different.
  17. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    You did what you had to do Padraig in order to bring your wife home, downsizing to reduce your workload. That was sensible. And a testament to your love for her, as was the care you were able to give her.
    But you were able to do it, Padraig, aided by the very sad circumstances of your wife's immobility, and your ability to transfer her by yourself. You surely know from reading TP that not everyone's spouse is, it must be said, so relatively easy to care for? And I mean relatively, I would never diminish the time and effort you expended on caring, but others face huge difficulties due to violence, wandering, almost total sleeplessness and severe disruption to their children's wellbeing. The very person causing the mayhem would surely not wish that life on their loved ones if they were still capable of rational thought? Those who eventually arrange for their loved one to enter a care home suffer enormous feelings of guilt, because although they have done the right thing, it feels wrong.
    I just feel it is misleading and unhelpful to imply that care at home is possible in every circumstance, if the carer just had the will, Padraig.
    Absolutely no offence intended, you know how much your spirit is admired by me and others. I hope you are recovering well enough to run again soon.
  18. LadyA

    LadyA Registered User

    Oct 19, 2009
    I suppose it's just that there's no "one size fits all ". Padraig, your wife obviously was more settled and at ease at home. My William seemed to feel more secure and settled in the nursing home. He had space to walk safely and comfortably there, for hours. Our house was too small for that. And outside, there are steps and gates to negotiate, and uneven ground. And I think he was afraid of falling again, because he knew I wasn't able to lift him by myself. He also thrived on the extra company in the nursing home. He couldn't speak much, but loved watching everyone's visitors coming and going. And they had full time physiotherapy staff, and a specially equipped physio room. When William lost his mobility after being very ill, knowing how he loved to walk, two members of staff got him up every hour or so and walked him around the building. His face would light up!
  19. kayze

    kayze Registered User

    Jan 20, 2014
    Hi eleanora,

    Sorry to hear of your husbands passing but glad you could be with him until the end.
    I too am looking after my husband at home,he is now on hospice at home.

    Why does it seem like when Padraig tells of being able to look after his wife at home people seem to respond negatively.yes he did do it and I admire him. That doesn't mean I don't admire people who could not.
    I had violence, wandering sleep deprivation and was looking after my young daughters
    It seems to me its the other way,if you don't put your loved one into care you don't belong here. That's how I feel.
  20. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    I have always admired what Padraig did, Kayze, but there are a lot of people who for reasons already explained, have not been able to continue caring at home, and you only have to read their posts to know how heartbroken they are. I just feel that we have to acknowledge that there are some instances where a care home is the right way to go, but that does not mean that the carer has not tried hard enough or is lacking in some way. The dementia is the reason, and no two cases are the same. As Padraig says, we are all different, both those with dementia and their carers. But those whose loved ones go into care homes are no less loving and caring, they have just been dealt impossible hands.
    Up to now, I have luck and circumstance on my side, but I know it could be very different, that's all.

    We all belong here, Kayze.

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