advice for respite care

Discussion in 'ARCHIVE FORUM: Support discussions' started by flamingo1, Mar 16, 2007.

  1. flamingo1

    flamingo1 Registered User

    Mar 16, 2007
    1
    Bournemouth Dorset
    Hello just signed onto the site and wondering if anyone who lives in the U.K. is a member. My Dad has Alzheimers,and has had it around 7-8 years now.We are now been told he needs to go into repite care so mum can have a break, we are all struggerling with this and if anyone has any help or veiws we would be glad of any info.We are in the dorset area of England.
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Flamingo

    Welcome to TP. You've actually found a british site (I know most forums are american, so it's good to have a home-grown one!) It's actually part of the Alzheimer's Society, and if you click the factsheets button at the top of the forum page, you'll find lots of info from AS.

    Regarding respite, it's very much a personal decision. My husband is at about the same stage as your dad, and I was also told that I needed respite. I visited the care homes in the area, and decided that my husband was not ready for that yet.

    I suggest that you and your mum visit the homes in your area offering respite. There's no need to give notice, you'll get a better picture if you just drop in. Then decide for yourselves if you think it would be a good idea. You don't have to accept what the SS recommend.

    It may be that your mum really does need a rest, but perhaps it would be possible for the family to take over for a few days. If not, it really should be her decision.

    I'm sure you'll get lots more opinions from other members -- that's what TP is about, getting lots of views, and then making up your own mind.

    Love,
     
  3. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    I've heard that Country Cousins who are England based will stay and care for a week in your home to let you go away. This is so Demetia sufferers are still in their familier surroundings. So its less tramatic for them it is also cheaper than care homes. They will also come up to Scotland.
     
  4. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    I haven't had personal experience of respite for AD patients but I have had considerable experience of respite for families of children with disabilities.

    No doubt it is very hard to think about - and harder to arrange - but personally I think it is essential for your MUM's long term health. If she has been caring for 7-8 years without a formal break, I suspect she's exhausted. If respite has been recommended by a professional, it would seem this is clearly the case.

    I urge you to help her think of it in terms of being able to keep helping your Dad, and not to see it as somehow failing him - or leaving him to cope on his own.

    In my professional experience, those wjho accept respite actually do cope better and for longer than those who do not. On the other hand, after 7-8 years it may be that the time for full time care of your Dad is also approaching. . . . .

    Thinking of you at this difficult time. May you find the right place for your Dad. Nell
     
  5. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi

    Sorry no experience of Dorset respite.

    I live in Scotland. Mum and Dad both have dementia and respite is great for me, to recharge batteries, just chill out, do nothing, or do what I want to do. I am allocated 8 weeks per year and believe me it is needed, to enable me to carry on caring for them.

    After 7 -8 years your Mum deserves a break.

    What are you struggling with?

    Your Dad will be fine. You need to think of your poor Mum.

    The first time I used respite for my parents, was very traumatic, I was in tears. The CPN had to take them because I chickened out. After the first day Mum and Dad were fine and indeed when I went to collect them they looked so relaxed, it made me think that maybe they would be happier in permanent care.

    Things will work out eventually

    Alfjess
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Nell,

    I don't think it's as straightforward as that. Disabled children do not deteriorate to the same extent as people with AD when they go for respite. They often regard it as a holiday for themselves.

    Respite is quite likely to cause a setback for people with AD. For one thing, they may become confused and agitated when removed from familiar surroundings. They may become depressed at being separated from their primary carer. And if they are borderline incontinent, as my husband is, they will probably become totally incontinent because NH staff do not have the time to watch out for or recognise warning signs, as those who care 24/7 do.

    I've cared for my husband single-handed for 7 years, and have been told I need respite, but I cannot see the point in placing John in a NH for a week, and have him come home much worse than he went in. I have discussed this with John's consultant, and he agrees that that is the likely outcome.

    I didn't go into detail in my earlier post, because I didn't want to influence Flamingo unduly.

    As I said, the decision is very much an individual one, and no-one knows in detail anyone else's circumstances.

    I just felt I had to give the other side of the picture.

    Love,
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Sorry, Alfjess, our posts crossed. It obviously worked for you and your parents, and that's great.

    But I don't think it would work for us.

    Love,
     
  8. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Skye

    Yes you are quite right.

    Thank you for posting the other side of the coin.

    Everyone's circumstances are different and I know every AD suffer is different.

    I can understand your point, that it might be detrimental for your husband to have respite. As long as you can cope, go for it.

    Sorry, if I have been rather narrow minded.

    Respite works for me, but I am me and other people are other people, I need to remember that.

    Alfjess
     
  9. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    This is a problem I have been struggling with... I am pretty sure that if I put Monique in a home for a week or 10 days it would be unacceptably traumatic for her end at the end of the period she might well find the move back almost as traumatic and have lost her trust in me and that she will will have suffered considerably.

    I now have a 'carer' who comes in daily and some of Monique's affection has transferred to her. Certainly she seems to know who she is.... I have a couple of relations who are coming to look after Monique in April for 10 days. The carers will come in a bit more often during that period... From previous experience Monique will be desperately concerned as to where I am but with reassurance from all and a lousy memory will not suffer too much I think.

    Later in the year I would like another break and will probably move carers in 24/7. This is not much more expensive (here in France) than the weekly care home rate. From the previous two experiences of my going away, leaving Monique in her own familiar surroundings with 'familiar' people around, I am pretty sure this is an infinitely less traumatic experience for her...

    It may be different for AD sufferers who have got used to going to 'homes' for the afternoon or all day and accept the home as a sort of club or whatever........

    Michael
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,865
    Kent
    I haven`t got to the stage yet of needing respite care, but know it will come eventually, so am interested in hearing of as many experiences as I can.

    The form of care that appeals to me the most, is 24/7 care in the persons own home, whilst the carer takes a short holiday away from the home.

    This seems to provide less disruption for the sufferer, and the carer is enabled to have a complete change of scene, meet other people and get a break from the loneliness and isolation of being a carer.
     
  11. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Not narrow-minded, Alfjess. We all focus on our own situation, because that's the only one we're familiar with. And we on TP know that no two situations are the same.

    But it helps us all to hear the other point of view, and I hope it will have helped flamingo in her decision.

    Love,
     
  12. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Hazel,
    Your points about respite are most valuable. It certainly appears to be a different matter for AD patients than for children with disabilities. Naturally, if you fear decline or increased distress, you would wish to spare your patient from this.

    I was really focussing on the care giver rather than the person receiving care. It does concern me that those who are not the direct caregivers may influence direct carers away from respite, for their own reasons - no doubt very good reasons - but which may not take into account the carer's needs.

    In your case, as the major carer, you were obviously the best placed person to decide whether or not respite was needed for yourself.

    I would suggest that the major carer's needs must be paramount, even if the patient may not truly benefit from the care. If someone has been giving the majority of care for 7 - 8 years and now is in need of respite, I would like to think that carer's needs were given first consideration. Even if this (sadly) means a decline for the AD patient, it might still be essential for the carer. As you so wisely say, the decision is very much an individual one, and no-one knows in detail anyone else's circumstances.

    It is always good to be reminded of oher viewpoints and I thank you for that. Let us hope Flamingo finds the right answers for their family.
    Best wishes, Nell
     
  13. Claire

    Claire Registered User

    Mar 31, 2004
    88
    Coventry
    Hi

    I used respite care twice, as I was finding it essential to get a break. I think that Mum's dementia was fairly well advanced by the time she did go into respite, and it didn't seem to result in a setback. It was when I went to collect her from the second spell, and found her sitting very peacefully in the lounge, very relaxed, that I realised that residential care would not be the end of the world for her. It did become necessary some time later, and she is now receiving the 24/7 care (and love) that she needs. Without the respite care, I think I might have cracked under the strain, and not been able to carry on.

    Take care

    Claire
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,865
    Kent
    Dear Claire,

    What a lovely way to be able to make a decision, to see your mother relaxed and peaceful, sitting in a NH.

    Who could ask for better.

    With love
     

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