1. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Thank you so much for your reply. I suppose I am desperate and a bit pathetic but I check in here every day and and replies lift my spirit. Cost of getting care at home is prohibitive.

    Aisling
     
  2. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,503
    Ireland
    You aren't pathetic at all, Aisling.
    What do you hear from officialdom, if anything? Have you heard any more from the care home? Is your husband still in Respite?
     
  3. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland

    I had auctioneer start to value our home yesterday. Should have it next week. Have started to collect all the papers I need now thanks to your advice. Care home manager told Health Board that their lack of input and support was elder abuse!!! That started the phone calls.................. They say I should have been getting 8 hours support.... Passed at some meeting....... No one told me. Two different assessments done recently. Result T in great form and when asked how was Aisling, he said " in great form. So they think he still knows and remembers me. They could have asked him how " Sylvia's mother" was and he would tell them the same

    Now an old health problem of mine is raising the ugly head! Don't want to post on open forum.

    Am just weary, exhausted and lonely.

    A million thanks for all your help and support.

    Aisling
     
  4. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,503
    Ireland
    It's a problem, when someone who doesn't have a lot of experience assesses people with dementia. The nurse who assessed William knew enough to make sure he couldn't see me while doing the assessment. When she asked about his wife, in a casual way, he said his wife had died long ago - his first wife died in 1990. The nurse said "no, I mean your second wife, the lady you're married to now. " and he said "Oh no- I never re-married. " but when I came back to the room, without any prompting he said "this is my wife. "
     
  5. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Thank you. It is good to smile sometimes!

    Aisling xx
     
  6. MAMMYGRANNY

    MAMMYGRANNY Registered User

    Jan 26, 2016
    56
    Hi Aisling,
    Hope all is going well for you. The red tape is awful. We are still trying to get a medical card
    Mammygranny
     
  7. Mossyanne1

    Mossyanne1 Registered User

    Feb 10, 2015
    45
    Hi Aisling, I was in a similar situation to you 7 months ago, it was recommended that my OH go into a CH and eventually I agreed. It broke my heart, I cried and cried and felt so so guilty that I couldn't look after him myself. Eventually I started to see how contented he was. he is always smart, the food is extremely good and they look after him really well. I visit him three times a week, he doesn't know I am his wife but knows I am familiar and smiles when I visit. I have now got to know a lot of the other residents and often we have little giggles about things that go on. I take our dog to see him and she loves it there, there is always something going on to help stimulate them. I would love to have had him at home but the strain was much too great as my health isn't brilliant. It was very difficult and emotional for the first 4 months but my OH is contented and life is so much easier all round. I really hope this helps, be strong, much love...xxx


    Sent from my iPad using Talking Point
     
  8. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Thank you. Really appreciate your reply. Red tape is like a jungle!!

    Aisling xxxx
     
  9. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland

    Thank you for replying. I value all the support from TP. Yes it is very difficult and in my opinion we have to be realistic to accept that there comes a time when the person with Alzh needs more care and support than any one person can give. My brain is logical but my heart is in bits.

    My OH is having lots of reviews and changes in medication so all up in a heap now.
    Regardless of what extended family or local nosey people think or say, I have to get him the best possible care now and in the best possible place. I have to honour his trust in me when he signed POW to me years ago.

    If We succeed in getting long term care, I will continue to support and care for him. When I visit will depend on what is best for him and for me. The place I hope he gets into are excellent regarding medical care, practical care, personal care etc. The food is excellent and snacks available 24/7. The ethos is a caring friendly and highly professional. They encourage activities but don't force them as they see every person as an individual.

    I must confess I have become intolerant of the opinion of many people and I now give little information to anyone anymore!! TP is my constant.

    To be honest, I still feel so angry about lack of support and friends becoming invisible!! This too will pass.......

    Thanks a million,

    Aisling xxxxx
     
  10. Emac

    Emac Registered User

    Mar 2, 2013
    172
    Aisling I have just read this thread through from the beginning.

    You summed it up when you said, 'there comes a time when the person with Alzh needs more care and support than any one person can give. My brain is logical but my heart is in bits.'That is exactly what it is like when you face the Care Home decision.

    It sounds like you are getting there and coming to terms with what has to happen for both your sake? I do hope so but my guess is that the head and heart see saw will continue for a while until your new situation with husband in a care home starts to be 'normal'. At least that is what happened to me re my Mum. In the beginning 6 months ago I spent a lot of time mentally beating myself up thinking I should have done more to help Dad to keep her at home even if that meant giving up my own life to look after Mum. There's a perfectionist voice in my head that says only complete sacrifice will do and I think most of us have that voice! (I could hear it in your first post.:eek:) Then once Mum was in care there was the constant checking up on them (and Mum) the guilt if she appeared unhappy or unsettled or if I missed a visit. However six months down the line things are better. It is like an adjustment has been made and I have let go a lot of the stress anxiety and guilt- and Mum is well cared for is visited regularly and for the most part she is absolutely fine.

    So keep going with the head decisions, they are the right ones. However the fact that your heart is in bits is not a bad thing. Maybe these decisions shouldn't be easy, the pain is a sign of how much you love your OH and want to do the right thing so you wrestle with the choice you have to make. And this is a change which you will need to grieve for it is a BIG change.

    I hope like me you will find over time that the pain lessens and you feel better. I know my Dad has struggled with the fact that Mum no longer lives with him but it has got easier and the affection between them when he visits is if anything stronger because he is less stressed.That is what I wish for you.

    Hang in there and just keep moving forwards.

    xxxxxx
     
  11. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Thank you so much for taking the time to read my thread from the beginning and responding to me. You are a star.

    Aisling
     
  12. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Nursing home

    Hi everyone,

    The psychiatric team are changing T meds and reviewing him while he is in respite. It is the manager and staff who are giving me the information. Have Power of Attorney for T. I think the psy team should be talking to me. I remember signing some form for T medical care in the home. Am now worried sick that the medicals can do anything they like if T goes into full time care. He will have to change from his own doctor to the care home doctor and because he has Alzheimers, the psychiatry for the Elderly will be monitoring his medication. Am worried that I may not be allowed to be involved in ongoing medical decisions. Any advice will be appreciated.

    Aisling
     
  13. starryuk

    starryuk Registered User

    Nov 8, 2012
    1,299
    #53 starryuk, Apr 4, 2016
    Last edited: Apr 4, 2016
    Aisling, I don't know how things work in Ireland, but this was my experience.

    It was good for mum to have the CH doctor. She was there twice a week and would come out at other times if I requested a visit. I always attended any appointments and we discussed options together. It was simpler with my mum, I must admit, as she was not on any particularly specialized 'psychiatric' drugs. It was the same in hospital. I was always there when the docs came round and they discussed matters freely with me.

    Perhaps you should contact the psy team and ask that they speak with you. Also explain your worries with the NH manager. Can you amend the form you signed?
     
  14. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,503
    Ireland
    Ah. Well. That's one of the hardest things Aisling. As part of the process (under the "Fair Deal" thing) there was an Assessment by a Geriatrician in the local hospital here - presumably as T is in a Nursing Home for respite, your's will be processed differently, unless he is home by then. And there was a lot of talking to me too. And one of the things he said to me was that it will be a difficult thing for me when William is in the Nursing Home, as I have had the sole care and responsibility for him for so long - but that now, I will no longer be his Carer, the Nursing Home will be - but I will be his Advocate.
    Once T is in full time care, the nursing home will be responsible for his care. They will be responsible for getting the doctor if he is ill, for noting any changes in behaviour and getting his medication reviewed if necessary - however, you should make sure you keep yourself informed, by talking to the Nursing Director or Manager in there regularly about T and how he is going, and his medication etc. And if there is anything you are not happy with - or you think T would not be happy with - tell them.
     
  15. MollyD

    MollyD Registered User

    Mar 27, 2016
    1,696
    Ireland
    My post is inadequate because I have no practical info to give you. I just hope you are hanging in. Hard to fill in forms and research your options in 'ordinary' circumstances, a mammoth task when overwhelmed and exhausted. So glad people here have good info & advice on navigating the process.
     
  16. pittheath

    pittheath Registered User

    Dec 30, 2013
    10
    Bedfordshire
    Aisling you are not alone in feeling this way

    Aisling I really really understand what you are saying. I have no easy answers but can only tell you what I have experienced for myself.

    My wonderful husband was diagnosed 4 years ago. He has never at any point had any insight into his condition, so I have managed the situation throughout. When things became more serious, I was advised, two years ago almost to the day, to put him into residential care. At that time I still felt I could communicate with him at some level and give him some quality of life.

    I engaged carers 3 times a day to deal with getting him up, dressing, showering, toileting etc etc. He was doubly incontinent and I, after initial horror, learnt to deal with that. I carried spare pads, used disabled toilets, helped him eat, sat with him in the sun, reassured him that all this was normal and nothing to worry about. For a while I could take him out for coffee, walks etc and I know I gave him a bit of life and pleasure for as long as he could enjoy it. People said I was mad, but I always knew somehow that I would know when I would have to let him go and it wasn't that time yet.

    Sadly last October he deteriorated further, being unable to stand, transfer, eat unaided. He was, however, as he has always been, totally unruffled, calm and lovely. He went into an assessment centre to determine his needs. I continued to try to persuade myself that our imminent move to an adapted apartment, plus upping the carers I was paying for would allow me to keep him at home.

    I'm not sure when, but at some point it just became clear to me that I was trying to keep him for my sake and not for his. He was calm and untroubled with the routine in the assessment centre. He was not distressed when I left him. With support from the mental health team and social services I began the painful process of finding him a residential placement.

    For the first few weeks I still couldn't accept he wasn't coming home and couldn't really believe that it was the best thing for him. But, however painful it is for me, and I can tell you I am crying as I write this, I had to slowly confront the awful truth that , within a very few weeks, he saw the care home as 'home'. He is calm, looks well, has steadily got used to the very nice staff and sees nothing peculiar about the situation.

    I am really afraid now that perhaps I should have let him go earlier. Perhaps I stressed him more by trying to give him a bit more life, trying to prolong our relationship, which had been so very very close for 42 years, for myself and not for his good.

    Now I visit him regularly, though not every day. He has a nice room and TV. Conversation went long ago, but if I am calm and happy and show no sign of distress, he will hold my hand and kiss me, and be calm and cheerful when I say goodbye. I do know it is the right thing for him. But - I still cry all the way home.

    I have finally come to accept that really he has gone. I believe I still have a role to play in continuing to provide reassurance and comfort. Touching, feeding him, talking to him as if it is the most natural thing in the world is what I must stay strong to do for him. But I know too that somehow I have to make a life myself so that I don't go to pieces. I must stay able to support and love him and in many ways that is easier now that the stress of physically caring has been lifted from me.

    I bitterly resent that we have had to pay for everything, day centres, carers, and now the home, but at least I have been able to make sure I have found the very best for him I can only says that in some ways now it is not as bad as I expected it to be. He is safe and I can be near him without the unpleasant bits.

    we are all different Aisling, but you have to find a way to survive this, I just hope that knowing my route might help or reassure you. With love. x



     
  17. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland

    Thank you. Lady A has sorted it for me. Great to get replies.

    Aisling xx
     
  18. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland

    Again, thank you so much. I got into panic mode last night. You have explained it so well. Does POA also give me power to act as T advocate?

    Aisling xx
     
  19. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,503
    Ireland
    The way I understood it, what the doctor was telling me was that the Nursing Home would now be responsible for William's care. They would have the responsibility and right to make decisions about when to get a doctor in, and to discuss any changes in medication necessary without me there - which I felt was fair enough, as I wasn't now going to be living with William 24/7 and wouldn't be seeing his behaviour and his responses to medication. However, the Home also had a responsibility to me and William - they couldn't just arbitrarily do something that would be out of the usual without consulting me and getting my input. So, for example, when William became a danger to himself because, while he had enough strength in his arms to push himself forward out of his chair, he no longer had enough strength in his legs to stand - so he kept falling - they called me in to discuss the problem, and ask how I felt about restraining him. Strapping him into the chair. I felt that common sense had to prevail in a situation like this - I KNOW people shouldn't be restrained unnecessarily. But this was necessary - he had fallen far too often, and they couldn't realistically assign two staff to just sit beside him all day every day. What they did do was have two staff get him up every hour or so and walk him around the nursing home, holding him, one on either side. He loved going for a walk! And it was a big committment for them, because one of those walking him had to be a physiotherapist. - but that's the kind of thing they brought me in on.
    Being T's advocate means more that you are looking out for him. So, if there's something you aren't happy with - even those little things, like his clothes not being clean enough, or his room being untidy - he won't be able to speak up for himself, so it will be up to you to do it for him. Or, if his tv is constantly left on to soap operas and he is unable to turn it off himself - it would be up to you to stick up for him, and insist that his tv is not left on all day. And of course, you will still be keeping an eye on his clothes, his toiletries, etc. I don't know what you intend about the laundry. William's home did have a laundry service - but it was an extra 15euro a week. Apart from the cost though - the laundry service puts everything in on a hot wash (for hygiene!) so clothes last no length. So I brought William's clothes home and did them myself and disinfected them.
     
  20. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Thanks again. I believe when T gets long term care, he will share a very large airy bedroom with another resident. He has a single bedroom at moment. I can't see T sharing bedroom as he may get confused with two beds!! But Am not going to worry about that!

    Aisling xx
     

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