1. Les

    Les Registered User

    Jun 23, 2004
    Hello, I'm not entirely sure why I'm writing today - I think I'm looking for some reassurance.

    My Dad has Alzheimers, and my Mum has been caring for him at home for years. Dad's 71 and has probably been ill for around 10 years. This summer he has deteriorated very quickly, and Mum has miraculously continued caring for him even when it became impossible - she's very determined. I have of course become extremely worried for Mum's mental and physical health, as she gets no sleep and so much stress. When I care for him to give mum a break I can last only 4 days and nights before I'm a wreck, and i'm in my 30s! Anyway the past few weeks everything has really escalated - and then on Sunday Dad fell over (yet again) and cut his head open very badly. Of course the hospital just stitched him up and sent him home with Mum. However, the good news is that having looked at care homes a few weeks ago and put ourselves on various waiting lists, something came up. And Dad goes into a CH tomorrow afternoon for 2 weeks respite. It would be one of two first choice homes for permanent care, so this is good. And they have said that the 2 weeks respite will possibly turn into something permanent. I'm now worried about several things:

    I'm worried about how mum will cope with this all. Dad has never been in respite, (we tried a few weeks ago and chickened out because Mum didn't like the CH and couldn't bear leaving him) and I know how awful it will be for mum to have to leave him tomorrow and walk away to an empty house. I live a long way away (500 miles) and told mum I would fly up today to help - but she wouldn't let me. My brother is going for tonight, and then a friend will be with her all day tomorrow. Then I have booked her a flight for Thursday to come down here to be with me for a week. Then next thursday I'll fly back to Scotland with her for a few days. Is there anything else I can do to help her? I know how heartbroken she will be and how alone she will feel. I feel devastated about it and I can't imagine what Mum must be feeling, specially in her exhausted state.

    Secondly, I'm worried that the CH won't let Dad stay after the 2 weeks. I know they are going to assess him to see if they can manage him. It's not a specialist EMI home - and a few weeks ago we were very confident that this wouldn't matter, because Dad, though demanding, was not a wanderer and would eat meals well etc. But since then we can't keep him still. He can't really walk well so he gets out of the chair constantly (often every few minutes) and then falls over. And at mealtimes he struggles to move all the time, so you have to physically hold him down, restrain his arms and legs and spoon-feed him (a few weeks ago he would be able to feed himself - badly - with a spoon, but at least he was feeding himself). I'm scared this is too much for the CH to deal with and that they will recommend taking him to another place with specialist EMI care. And we haven't found any EMI units locally that are nice. I know the CH have dementia residents, but I guess it depends how demanding they are... Do you think they will sedate him?

    I know nobody has an answer for me - I think I just needed to voice my worries.
  2. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Lesley,
    Your Mother will really appreciate the rest. Her wellbeing is very important as you are aware.
    The C.H. talking to the Manager regarding sedative would be my first call. On some occassion they may have to but they do not like doing it. The E.M.I. unit my husband is in prefer to have them mobile than sedated.
    Also, the C.H. can extend period of stay. They are the experts. From your message the caring is too much for your Mother and with this terrible illness the decline does come on quickly when we least expect it.
    Can you phone the C,.H. to talk to the Manager ?
    Coming back to a empty house is horrific I know from my experience but once your Mother can have some rest and good nights sleep will understand as I have that there comes a time when we can do no more. We do it out of love and because we love we want the best for them as you are doing for your Parents.
    I wish you well. Christine
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Les

    As you know, I've recently been through the identical situation with my husband. John was never in respite either, though he did transfer directly from hospital, so that made it easier. He has settled remarkably well, and seems to accept that he needs the extra care. He's in an EMI unit attached to a care home, and the attention he is receiving is wonderful.

    I don't mind the empty house so much, though it's easier for me, having been widowed before, I'm used to living alone. What bothers me so much is the guilt.

    On a bad day, John just wants to sleep, and I might as well not be there. On a good day, he's alert, wants to go for a walk, tries to talk, and I feel terrible because I think he should be at home. It's a constant switchback of emotions. I can't honeatly say I'm any more relaxed than before he went in.

    On the other hand, I don't have to worry about falls, and the sleepless nights, and that's a blessing.

    As for the CH, I don't know if they'll keep your dad or not. I know I was doubtful about John going into an EMI unit, but now I'm so glad he's there. They have given him a sedative to calm the aggression, in fact it was prescribed when he was in hospital, and it seems to work without making him a zombie.

    I hope it works out for you.

  4. Vera

    Vera Registered User

    Oct 3, 2007
    I have no advice for you. My MIL is also going in a CH today and as we speak is resisting now the time has come to put her suitcase in the car.

    All I can say is that you seemed to have worked out a lot of company for your Mum already which I'm sure she appreciates.
    Hugs to you and your family through this very difficult period. I'm thinking of you.
  5. Les

    Les Registered User

    Jun 23, 2004
    It's just so hard to get my head around. I'm worried about mum if he's not in a care home, I'm worried about mum if he IS in a care home. I'm worried about dad falling over and hurting himself. I'm worried about how he will react when he's in the CH - I don't know if he's able to be really upset and miss mum, or if he will accept it. But of course I remember the old Dad and I know how he would have hated it, and how much he loved being around his family. It makes me weep. I hate the fact that tonight is possibly the last night he will ever spend in his home. And yet I want the CH to keep him long term. It's such a mix of feelings. At the moment I'm speaking to Mum on the phone several times a day and I'm scared of crying as I know it'll set her off, and she needs me to be strong.
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Oh dear, Les, it's no good telling you to stop worrying. It goes with the territory. We never know if we've done the right thing, we always feel we haven't done enough.

    But at the end of the day we can only do our best. We have to make unthinkable decisions, and trust our loved ones to the care of others, when all we want to do is hold them close.

    The doubts never go, I think. You just have to learn to live with them, and try not to feel guilty.

  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Les,

    There will never be a perfect solution for you, your mother or your father. The only solution will be a compromise, and the lesser of two evils.

    You are trying so hard to make everything come right for everyone, but you know life`s not like that. Your mother sounds as if her own health will be affected by the stress of caring for your father, if it hasn`t been already. If it comes to that, your father will be admitted to a CH in an emergency, and that`s the last thing you need.

    I hope your father`s OK in respite care. You are certainly looking after your mother, whilst he is away. You are doing everything possible. I`m sure you can do no more.

    Love xx
  8. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Les, Care Homes can cope with far more than you think. Even the lowest level (i.e. non-specialist) have residents who wander at night, talk rubbish in the day, and fall over.

    Mum's home has all of these, it is par for the course, and they cope with all of this very well. There are also plenty of residents in wheelchairs, and that is not a problem to them either.

    I know we all complain about the cost (mum is self-funding £460 a week), but it is well worth it when you think what care they get, 24 hours a day.

    Don't worry too much. My personal advice would be to choose the home that has the cheeriest staff. Is a good sign of good management.

    Best wishes

  9. Taffy

    Taffy Registered User

    Apr 15, 2007
    Hi Lesley,

    I can identify with all your concerns and only through conversations with other carers who use respite I have learnt that the first time is the most stressful for the carer and family. Overall the loved ones seem to fare better than they expected them too.

    It will be hard on your poor mum she has really done a great job and so have you she is lucky to have a supportive family. About the sedation I am not sure for the UK but where mum is (Australia) the care home cannot give any medication unless it is ordered by a medical practitioner and this is done reluctantly.

    I think you have done remarkable well for your mum it's best if you can try not to cross to many bridges before you come to them, speaking from experience here. I hope that your mum benefits from the respite and whatever eventuates from all of this it is to your likening. Best Wishes Taffy.
  10. germain

    germain Registered User

    Jul 7, 2007
    Dear Les,

    It's a roller coaster isn't it !

    Try to stress to your Mum that she needs to have a good rest etc because even tho' your Dad may eventually be in a CH permanently she will still be visiting, caring and worrying about him. Even when our loved one's are not living with us there's still a lot of caring to be done - only in a different way.

    Hope the CH can keep your Dad but it doesn't harm to keep looking around - we found our Mum a place in a mixed residential /EMI home that was just getting its EMI registration the week our Mum moved in - and if the CH your Dad is going to for respite already has dementia residents they may be considering going down the same road. Sometimes CH's can apply to change their registrations as their long term residents start to develop dementia as they don't like to have to move them on.

    All the best
  11. Les

    Les Registered User

    Jun 23, 2004
    Do you know, I don't think i'd thought until now how much mum would still be a 'carer' even when dad is in the CH. I think i've only been thinking about how she'd cope at home on her own, not how she'd cope with the daily stress of worrying about him there.
  12. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    I think a lot of people think the problems are over when the loved on goes into care. Not so!

    I'm lucky, so far that I haven't any major issues with the CH, and it's still very difficult to come to terms with.

    So many people have problems with the person not settling, becoming aggressive, depressed -- you name it. And they have to cope with that in addition to all the negative emotions guilt produces -- no, it's not just a question of loneliness!

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