1. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    I'm at the 'agonising' stage too now.

    When we were re-assessed by SW four months ago, she thought I should consider respite, but I wasn't ready, and I didn't think John was ready.

    This morning I took him for his annual BP/cholesterol etc. tests with the practice nurse. John is fine, she said I was doing a good job, but that I looked exhausted. She was so concerned, I just wanted to cry. She too said I needed respite.

    Anyway, she's arranged for our GP to phone me on Thursday to discuss it. I just don't know what to do.

    I really do feel exhausted, and my neck has seized up again. I get a trapped nerve, which gives me agonising neuralgia. And I can't take strong analgesics because they aggravate my diverticulitis. The last time I tried I was in hospital for a week. The only thing I can do is have osteopathy.

    Sorry for the moan, but I don't know what to do. Do I agree to respite, and risk more confusion for John (he's an a steep decline at the moment), or do I press on and hope I can keep going?

    Advice, please.
  2. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Hazel,

    No one can really answer that except you of course, I hope you will recognise when you're ready. When my Mum was sole carer for Dad, and her health starting to suffer, it seemed the right time to persuade her to get some outside help. She was holding on because it's a way of keeping back the inevitable I suppose. If she had packed up altogether under the strain, then Dad would have been immediately thrown into big confusion. It seems a sensible step in order to help you to keep going, and surely worth a try?

    Best wishes,
  3. Kayla

    Kayla Registered User

    May 14, 2006
    Dear Skye,
    I think you do need to consider your own health as a priority because otherwise you will become ill and your husband will have to go into respite at short notice. My Mum had an operation on her toe six years ago and went into a Care Home for three weeks to rest, before she returned home. She made a speedy recovery and when she went back into the Care Home a few years later, she knew her way around and settled down really well.
    An alternative might be for someone to come and stay at your house to care for him, while you had some time to yourself. I was told by Mum's Care Home that some people spend a week or two in respite care every two or three months, in order to give their relatives a break and this arrangement can continue for years. Even caring for someone who doesn't live in the same house is very tiring and I can imagine that you must feel exhausted. Be kind to yourself and your husband will probably benefit too.
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Hazel,
    You are worried that John isn`t ready for respite, but will he ever be?

    I made a promise to myself that my husband won`t go into any type of care until he doesn`t know the difference. Reading your Post is making me think I`m being naive. If the practice nurse is making comments about how exhausted you look, perhaps it`s time to take stock.

    The time will come, sooner or later, when you WILL need some respite. Don`t let that time be an emergency, for both your sakes.

    Why don`t you give it a try? Love Sylvia.
  5. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Hazel and Sylvia,
    Do you mind if I put forward another point of view? If you allow your husbands to go into respite (maybe just for a weekend), it does mean that the caring staff begin to get to know them, and vice versa - so if ever either of you were so worn out, or taken ill, and respite had to be arranged quickly, at least you would know that your husbands were not going to total strangers. Short term respite may not only help you, but may also help prepare them for an unexpected occurrence.

    Hazel, it really does sound as though you needa break - carry on as you are and you may be left with no choice. You are doing a brilliant job caring for John; you would not be letting him down if he went for a little holiday so that you can get some rest; you have nothing to feel guilty about. I know it is a very hard step to take - but respite sooner rather than later, may help you to care for John longer at home.

    Thinking of you.
    Love Helen
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    #6 Margarita, Jan 16, 2007
    Last edited: Jan 16, 2007
    I only know how from my own experience of not taking respite for 2 years , how exhausted I got and my sciatica got so painful, so I do feel for you when say trap nerve.

    I would say go for the respite even thought yes when your husband came back he be confused , but that only be for a week , and your be rested up and prepared for it, its like a shower to the brain respite.

    I know people perceive it as different as I am caring for my mother not my husband, but the caring needs our same and the feeling of exhaustion in not taking a break Is the same. ( of course they out other issue with caring for a husband so would be different in other different way)

    My first respite I came away feeling guilty then it passes because I new mum was coming home.

    Yes you do really have to be realistic like Sylvia says because if you want to see this to the end with your husband , your really going to need time out , be it someone coming 24 hours to your home to care for your husband , while you stay away for a few days or a week or your husband go to a care home for a few weeks .

    Only you alone can summon up that courage to do it.
  7. Bets

    Bets Registered User

    Aug 11, 2005
    South-East London, UK
    I thought of arranging respite for my husband over two years ago. We both had Social Services assessments and were told we could have rolling respite of up to five periods of two weeks a year. I then decided I couldn't face the idea of him going into a home even for a week or two and dropped the whole idea. Now we are two years further down the road and are having another Social Services assessment this week. I can now see there may well come a time when I have to consider full-time care and the idea of my husband getting used (hopefully!) to going for regular respite may make any eventual permanent move a little easier.

    What I am trying to say, Skye, is that everyone above is giving good advice. I know it, you probably know it, and we have to be strong enough and determined enough to follow through. So much easier said than done. I am really going to try this time and think you should consider it too.

  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    #8 Margarita, Jan 16, 2007
    Last edited: Jan 16, 2007

    You have express in words what I could not, that’s how I feel also .

    I never felt back then on first , second respite, they would come a day that mum would not get so upset in going to respite , she now tell me well they feed me 3 times a day and look after me , she still does not like the idea of being in a room on her own , so I took a radio, She was married to dad for 54 years so was use to his company in the bedroom at night , but as long as the TV on or the radio for company she ok .
  9. j.j

    j.j Registered User

    Jan 8, 2007
    hi, we tried respite today for the first time with our mam and she hated it as we felt she probably would, she lasted two hours before i had to pick her up, we had agonised over taking this step, i hardly slept with worry, BUT on reflection i feel HAPPY we did try it, mam couldn,t remember it at all after half an hour, i know this may be harder if the person has more memory and may remain upset, but i do feel it is another avenue we have tried, its awful making these decisions, but time out from caring does recharge the batteries,

  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Everyone

    Thanks for the replies. Helen, you're quite right, it makes a lot of sense for John to get to know a NH before he has to go in as an emergency.

    I'm still not sure, though. I tried to talk to him about it this evening, but with his communication problems I didn't get very far. I'll try again tomorrrow, perhaps the idea will have begun to get through -- or perhaps he'll just have blanked it out.

    I'll wait to see what the GP has to say on Thursday, and in the meantime I going to visit some of the local NHs. I've been thinking about it for a long time, but I guess I've been blanking it too! But I do realise now that I've got to do it, rather than wait until our hands are forced.

    Thanks for the input,

  11. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Skye,
    Good on you, starting to look round the Nursing Homes - I burst into tears when I looked round the one mum used to go to for day care; mind you, thinking about it, I did when I looked at the one she is in now. You fight accepting the changes for so long, but then the day comes when you just have to accept them.
    Thinking of you.
    Love Helen
  12. mocha

    mocha Registered User

    Feb 17, 2006
    Lancs, England

    I was like a lot of the previous writers as I was offered respite and I kept saying I could cope but got very tearful when talking to his Doctors. In the end it was an emergency that made it essential as I had a fall and sprained both ankles badly.
    My husband settled extremely well and thereafter was able to go into a NH about every 3 mths. Now it has come to the point that he has had to go into care permanently and I am so glad that he knew the surroundings and the excellent staff knew and liked him. Went to see him again this afternoon and he is fine . He can watch tv and listen to music in his room if he prefers to be on his own. Before you collapse - and it does affect your health - please try Respite if you are offered it.
    Good Luck
  13. mel

    mel Registered User

    Apr 30, 2006
    Hi Hazel
    how did it go with the GP today?
    i really don't envy you......its a very big step to take but if you can find a home that you really like( I must say when I was looking round for mum I did it half-heartedly!!!) ...perhaps ask if he can go there just for a couple of days to begin with....I think this lessens the guilt feelings (though why that guilt monster is there at every turn I don't know:confused: )
    You need a break, Hazel....before you reach the point where you're really ill.....then John would have to go in for longer.......
    i agonised over respite for mum and I felt so cruel......I think we get so protective of our loved ones......but after the first respite period it does get easier.....i promise!!!
    Love Wendy xx
  14. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Skye hi,

    I think it would be pretty irresponsible not to take the advice of medical staff who say you need a rest. It you have a total breakdown then that results in panic measures and John getting totally disorientated and maybe other problems.

    It sounds like we are both around the same stage with our partners... I am off to get a form that I hope the doctor has completed for me to give to the AD home nearby so that I can install Monique for a week this spring.

    I have managed to discuss it with her, in the form of, I want to go sailing but it may be a bit rough and uncomfortable - would you like to go to a 'luxury' hotel for a week and be pampered - lots of people around to look after you... Now there's a pack of half truths.. I have mentioned it a couple of times and she seems to like the idea....

    We all need to get out of it for a while... You think you can cope, can do it but actually we are probably hanging on by our finger tips and its time to climb out for a short while - a week or so.. The AD home I want her to go to is the one eventually she will inhabit permanently so I want to see how she gets on there for a week... How they get on with her etc... One of the carers is going to drive down there and visit a couple of times and report back to me so I hear it from both sides.........

    Just got to see when they have a weeks vacancy!!

    Go for it Skye - get out of the oven just for a while -


  15. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Everyone

    Thanks for all the input. I've tried hard, but still haven't reached any conclusion.

    The GP has prescribed temazepan for John, to see if that will help him to sleep at night. Just for a month, he says that should be enough to establish a sleep pattern. We'll see.

    Spent today going round care homes (John was at day care), but that was pretty inconclusive too.

    I visited three. The first was a large, purpose-built home. It was OK, but I wasn't impressed by its homeliness. They have three respite rooms which are under contract to SS, and have to be booked through them, even though we're self-funding. They couldn't even tell me how much, I'd have to discuss that with SW.

    The second one was also purpose-built, but seemed much more cheerful and friendly. The accommodation was lovely............but.........they do provide respite, but only if they have a vacant room. They don't keep rooms specifically for respite, so there is no possibility of advance booking, it's all pot luck.

    The third was a conversion of a large country house, set in its own grounds with beautiful views, country walks, duck pond, etc. The facilities are more dated, but the staff were very friendly, and they were setting up a painting session, which John would have loved. But the respite situation is the same as the second one.

    It seems as if the first home is the only realistic option for respite, but would definitely be my third choice for long-term care.

    Is this SS contract arrangement usual? It certainly wasn't the case ten years ago when I was looking for care for my mother
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    #16 Margarita, Jan 19, 2007
    Last edited: Jan 19, 2007

    Yes , when I ask for a care home respite that my mother has been before I have been told they is no vacancies, normally my social worker does the ringing around & asking if they is any vacancies , I say normally because the care home my social worker pick is normally really good . this one is not what I expected , just that I was surprise that they did not have a nurse in that could do my mother blood sugar levels, all the other home had one ,but they said they call one in, Also my mother had to go upstairs, they did have a stair lift that my mother had never use, she did use it but was really scared, I don’t even want to think about how she going to go down.

    I suppose in a way its good because in the house I am moving to we have stairs to the bathroom, even thought they a toilet downstairs , so soon the OT is going to put a stair lift on our stairs as long as I supervise my mother as she go up , so she be use to one by the time I pick her up on the 31st we have a date for the move now next Thursday , so by the time mum home we shall be in new house, sorry I have gone on about this, just that I felt like bring mum back home last Saturday with the worry of that care home. I would not of left her there if it was not for this move, I was a bit stress. Things are now falling into place with the move. But I am really going to make sure that social worker puts mum in to a nursing care home next time mum go to respite.

    So sky ask the care home what they nursing care is like and do they have any. does your husband have any other medical conditions beside dementia ? As in like my mother has diabetic so needs nursing care
  17. Honey

    Honey Registered User

    Dec 30, 2006
    Respite Care same situation more questions

    I am so relieved to read this i am at exactly the same stage - or rather my mother is. I am trying to encourage her to take this option but as dad is ony 56 she os worried that hw will be placed with older people - but i guess he may not even notice because of his dimensia. How did you find the day care has he settled to that? We are struggling to find day centres can i ask you where you found out about them?
    We just cant work out when permanent care will be needed but would like dad to get used to the environment - but how detrimental can this be to him? :D :confused:
  18. connie

    connie Registered User

    Mar 7, 2004
    Honey, Lionel was relatively young when he needed 'day services'. His were arranged by his CPN. (Commumity Psychiatric Nurse), could also be Social Worker or even GP.

    We were fortunate that one of the day care centres, about 25 miles away, set aside a day a week for "younger people with dementia", so Lionel went there.
    After a short while I believe he would have fitted in anywhere.

    Day services are always worth considering, however, they do not work for everybody.
  19. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Honey

    I asked for a re-assessment by SS last September because John was deteriorating so quickly. Our SW suggested one day aweek of day care.

    There are two options here .......one is a day centre run by one of the care homes, and John could heve had a place there straight away. It caters for people with all disabilities.

    The other is a day centre run by Alzheimer Scotland, and we opted for that, even though we had to wait three months for a place. Because John cannot communicate well, I thought he would be isolated in the other place.

    He has settled well (has been 3 times now, with no problems), and I think that is because he is familiar with the place, and all the others have similar problems. Also the staff are specially trained in dealing with dementia.

    I think you need to get in touch with your SW to see what is available in your area.

    Good luck,
  20. Honey

    Honey Registered User

    Dec 30, 2006
    Hazel, thanks for the information we have a visit from SW on 2nd Feb so Ill see if he has any suggestions. Because Chris is only 56 years with alzheimers we have seemed to fall between two departments. Initially Chris was under the consultant psychiatrist for the 'working age' who was part of the mental health team but when Chris was diagnosed with dementia, the psychiastrist for the 'working age' said he had no experise in dementia/alzheimers so referred Chris to the psychiatrist for the elderly who dealt with dementia and alzheimers patients. But he told us that he could not be Chris's consultant as Chris was too young, so it was suggested that care for Chris was shared between the two departments. This obviously did not work so I battled to get someone to take total responsibility for Chris' care. So now Chris is under the care of the 'psychiatrist for the elderly whose expertise is in dementia/alzheimers. But it has been suggested that the SW should come from the 'working age'mental health team as he understands the needs of 'younger people' but from his own admission has no expertise in dementia......................As the SW role in this seems to be crucial should I stick with the existing social worker or ask for a SW from the 'elderly' team who understands the needs of dementia/alzheimers patients?..............sorry Im rambling, but Im so confused. Honey

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