1. Aragorn

    Aragorn Registered User

    Jul 23, 2015
    18
    I am new to this forum so pls excuse any inadvertent transgressions.

    I am the sole carer for my wife, who now has absolutely no short-term memory although she retains much of her professional life and older memories. Sadly, her day-to-day memory is also now crumbling - can't remember where we keep the coffee cups, etc. The result is that she now needs most of my life to bring order and structure to hers. She doesn't do "silly" things and is still a pleasant person with no challenging behaviour, but I find the minute by minute responsibility increasingly oppressive and depressing as she declines. On the one hand I am pleased to provide the support, but on the other hand I hate the loss of "self" and loss of my own social, cultural and intellectual freedoms - we both had wide circles of friends and varied interests before this condition struck.

    One thing which would be welcome would be a "respite holiday" for both of us - partly so that I could take a break but also so that she could enjoy social activities which I find hard to deliver alone. But I would want her to look forward to the break as one offering things she would enjoy "in the moment". I have had to accept that she has no recollection of events a few minutes later but I don't want her to feel "parked" or "put away" - she is in many respects still a very lively person.

    Has anyone any suggestions as to how to achieve this? Advice to offer or experience to share?

    TIA
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,429
    #2 jenniferpa, Jul 25, 2015
    Last edited: Jul 25, 2015
    Hi and welcome to Talking Point.

    The society has a fact sheet that mentions a couple of organizations that might be an option for you http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=158 but I also know that a number of posters have experience with other companies and I'm sure they will post when they see your message.

    There are also a few posters who holiday with their spouse and take a carer along with them. This allows them to go on a more "regular" holiday but have a helping hand when needed.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,622
    Female
    London
    #3 Beate, Jul 25, 2015
    Last edited: Jul 25, 2015
    Check out www.revitalise.org.uk and www.dementiaadventure.co.uk. Both provide holidays for carers and their loved ones. Revitalise have three centres throughout the UK and three weeks a year reserved as Alzheimer's weeks. The next one is coming up end of September. The rooms are mostly single rooms, all with adjustable beds and wetrooms. There are nurses 24/7 and plenty of volunteers looking after both of you. You can go on daily excursions and there is entertainment in the evening. Meals are included and one evening is reserved for the carers meal where carers go out together while the volunteers look after their loved ones. http://revitalise.org.uk/wp-content/uploads/2015/02/alzheimers-brochure-for-web.pdf

    Dementia Adventure is smaller and feels more personal. There is space for four couples and one volunteer per couple on their five day holidays, with locations including Devon, the Isle of Wight and the Lake District. Personal care costs extra but they look after you really well, the day trips are not too strenuous and the itinerary is flexible. They also do sailing trips and can organise a bespoke holiday for you. http://www.dementiaadventure.co.uk/adventures/holidays

    I can recommend both and have rebooked with both.
     
  4. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    89
    I'm looking forward to seeing responses from this post as I find myself in exactly the same position with my husband.

    At the minute I'm finding the loss of him,as he was, hard to cope with. The daily repetitive conversations and questions are wearing me down. The fact that we live on a Narrowboat in small confined space is also quite challenging.

    I'm thinking of moving into a house while he can probably still deal with the massive change.

    A holiday would be a fabulous idea.

    Sharron
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,205
    Female
    Dundee
    My husband has fairly advanced Alzheiemers but I'm still managing to take him on holiday. I've never done one where activities etc are provided but I have looked at the sites Beate mentioned and these holidays look good.

    I tend to stick with self catering holidays now as that means we will have a washing machine! I must admit the car is well packed with all that is needed to ensure a successful week - eg Kyie sheets etc as he is doubly incontinent. I find I can still manage that when we're away.

    I have twice taken a carer with me when we've gone abroad. I couldn't manage airports etc by myself with Bill now and it means the care side of things is shared. It's also been good to have some 'normal' conversation! I suspect you're not at the stage of needing this yet. Before I took the carer I always made sure we booked assistance at all airports, of course I still do that even though we have a carer with us. It means that going through security etc is speeded up and much less stressful. Of course my husband was willing to sit in an airport wheelchair, yours may not be! The wheelchair was good because of the long distances to the gate etc. we now take our own wheelchair and get assistance right up to the door of the plane.

    In May we used this company when we went to Spain. We had a respite apartment in their accommodation which is south of Benidorm. I can't recommend them highly enough.

    http://www.unicocare.com/unicocare/costa-blanca-senior-resort/


    In August we're having a week in Perthshire (only 1.5hours from home) in a self catering cottage. We're going by ourselves this time and hopefully things will be ok! We've been lucky enough to have this provided free through an Alzheiner Scotland offer in conjunction with a well known self catering company. Some of the owners offered yo their properties free for a week for people with dementia and their carers. I applied and was successful.

    It's worth looking out for grants for short breaks. I got a grant to help me pay for our carers flight. I can't recall if it was from Alz Acot or Dundee Carers but it was great to get it.

    Not sure this is helpful as our situation is quite different to yours. Good luck anyway.
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,622
    Female
    London
    Everything gets more complicated where incontinence is involved! Both charities we've booked with (and they are charities not businesses at the end of the day) cope admirably with it and wash laundry for you. I admit that on holiday I want some respite from that so self-catering would not work so well for us, but it might for you.
     
  7. Bay

    Bay Registered User

    Jul 24, 2014
    44
    Kent
    Since my OH was diagnosed we have gone on several coach holidays. Although these are not holidays that I would have chosen before dementia struck they have been surprisingly successful. We are collected from our local town and taken to the destination without any worries. (Journeys by car are very stressful as he criticises my driving all the time!) Bed/breakfast/dinner is normally included in the price and the hotels we have stayed in have been good. Some excursions are normally included in the price also but I normally plan some for just the two of us.

    I find that it gives me the freedom to concentrate on his needs and also gives me the opportunity to meet other people and have 'normal' conversations. However, my OH is still at the mild/moderate stage so we have no problems with incontinence and he is able to interact with other people. This year he struggled with the buffet meals and needed to be helped with choices but this didn't cause too many difficulties.
     
  8. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    89
    These responses are great and have given me some food for thought.

    Are there any holidays just for the person with dementia? Somewhere where they could go to be looked after for a long weekend or week and their needs catered for ?

    Anyone had any experience of this ?

    I suppose I'm looking for some respite for myself really.
     
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,205
    Female
    Dundee
    I suppose that might need to be a respite stay somewhere. Lots of people on TP have expertise of that (not me!). I don't know of anywhere that does holidays for people with dementia without their carers.
     
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,913
    Suffolk
    Tiller girl, I think it's called respite.
     
  11. Beate

    Beate Registered User

    May 21, 2014
    11,622
    Female
    London
    The traditional respite takes place in a care home. If your loved one is self-funding, you can just book them in your chosen one. If not, you need a carers assessment through Social Services to find out your entitlement and how much it will cost. This will vary considerably from borough to borough, but is paid from the cared for's funds.
     
  12. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    89
    Oh no I couldn't put him in a care home , even for respite, just yet.

    I'll just leave him with my son and pop to my daughters caravan for a night or two. That works for me but obviously my OH doesn't have any benefit from it apart from the fact that I'm a little less stressed than I was.


    Thanks everyone for all the info!
     
  13. Aragorn

    Aragorn Registered User

    Jul 23, 2015
    18
    Thanks for all the replies, everyone. From what I've heard, Vitalise and Dementia Adventures do a great job, but those holidays are for both carer and client. I think I line up with Tiller Girl in that I would really like a break of a long weekend or a few days on my own, although I feel pretty guilty about admitting that in view of some of the posts that I read here. But I would relish "normal conversation" and some lively interaction for a period not defined by the timetable of dementia. Even when a kind friend takes the load for an hour or two, life is still ruled by the clock, the pills, the next appointment, the next meal, etc, etc. For those clients who are not "difficult", I would have hoped that a holiday-type stay in a well-organised care home would be a reasonable possibility and a good experience for all concerned. I'll keep looking, and thanks for the help.
     
  14. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    89
    I don't think you should feel guilty Aragorn. There's nothing wrong with wanting a little bit of time for yourself. In fact , that's what most people say to me ...'make sure you make time for yourself' .

    This condition not only robs the patient of their life but it also takes the carer's life away too.

    I take my hat off to the people who have posted in reply to this thread. They're an inspiration!

    Perhaps in the future , as more and more people develop dementia, there will be more variety in the support offered, both for them and for the carer.
     
  15. Skyrim

    Skyrim Registered User

    Jun 19, 2015
    37
    Respite in a care home

    I arranged this for my MIL last year through the local authority, who were fairly helfpful and funded about 50% of the weekly charge. This was so I could go away for a break and see my own parents.
    What I would say is that I fought to get her into a home that I occasionally worked because I knew it was decent and, in effect, she would have a better break than I did!
    This year, the respite is promised but not available as the LA have closed all their homes and there are very few respite beds. We can't afford the £1500-odd weekly charge so we'll be going nowhere.
    Under the Carers Act, we get reassesed again and see what the score is but this time the perspective is slanted towards my needs and I believe the finding is going to remain short as she will have to fund her stay, and contribute to my break (!)and I don't know of anywhere locally that is decent AND affordable. my parents and I will be the ones who will lose out most.
    Anyone have any experience of the effect of the new legislation?
     
  16. joggyb

    joggyb Registered User

    Dec 1, 2014
    119
    Just a thought, and I've no idea whether it would be at all viable - but would it be worth looking into somewhere like Butlins (outside of school holidays, perhaps)? Activities laid on, and socialising for both of you?
     
  17. mancmum

    mancmum Registered User

    Feb 6, 2012
    385
    Informally, I've been told I will get less help after the act than before

    Rang to arrange my third carer's assessment - now three months over due - to be told that lots of people are no longer getting 'me time' money.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    9,855
    Female
    South coast
    I feel your pain.
    This thread says it all

    http://forum.alzheimers.org.uk/showthread.php?80703-FightForRespite
     
  19. Aragorn

    Aragorn Registered User

    Jul 23, 2015
    18
    Hi Skyrim - you asked about Carer's Assessments. Our local AS facilitator urged all our carer group to complete an assessment as soon as the Act came into force. I did so online. It's quite a good questionnaire - detailed and addresses various specific aspects of carer life. They recommend setting aside an hour for it, but I spent two hours describing the impact of my wife's condition on MY life - it's a carer's assessment, after all. The response came back a couple of weeks late, and was frankly disappointing. It was essentially a list of phone numbers of voluntary and other organisations which might help in certain aspects - but in fact, the voluntary sector has extremely limited resources and can't provide more than very local short-term help - to cover for a shopping trip, for example. So it's family, friends or your bank manager, I'm afraid.
     
  20. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    89
    I was given a list of telephone numbers to contact too. When I took my husband to the drs he didn't even know he'd got dementia ! It's all very frustrating. I get the impression that we have to fend for ourselves.

    This week I decided that I'd do 'something' for myself so I'm trying my hand at watercolour painting. I'm finding that because I'm engrossed in it , it's quite therapeutic . My OH is content to watch TV or do a puzzle so it's keeping us both quiet.

    I know it's not a holiday but it is giving me some 'respite' . Is there anything that you could get engrossed in?

    I've sent you a message should you want anyone to chat to. It'll be in your Inbox, top of the page in the right hand side.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.