1. cariad

    cariad Registered User

    Sep 29, 2007
    Hello everyone,
    A brief background, my mam has FTD and in may was diagnosed with motor neuron disease too. Almost a year ago my Dad died so my mam came to live with me. At the moment she is in respite but I feel awful, totally wretched. The staff are lovely but my mam knows her surroundings and is quite with it in many ways. The patients are all severely demented and I think that is upsetting Mam.
    What I'm wondering is if anyone has any wxperience of getting respite in their own home, for say a WEEK (so I can take my children on holiday). I'm more than willing to pay but this person would need to live in and supervise mam for 24hrs a day. I think this is the only answer. It's a catch 22 situation. I want mam to live with my family but need to give the children
    (and hubby) a break.
    I never thought it would be easy to leave mam in respite but I feel rotten about where she is. She is only 65 and the other residents are all much older and much much less able than mam.
    Any suggestions welcomed:)
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Cariad

    How awful for your mum to have both FTD and motor neurone disease, and so young too.

    Well done you for bringing her to live with you, and i'm sure you have absolutely no reason to feel guilty.

    The trouble is, there is very little provision for younger people for dementia, and it's very difficult to find somewhere suitable.

    I don't know anything about respite in the home, but I imagine it would be very expensive.

    I'd try your local branch of Alzheimer's Society, they may be able to suggest a more suitable NH for respite, or may know of someone who would undertake the 24 hour care.

    You could also try Crossroads, they may have someone who would do it.

    You're absolutely right, you have to give your husband and children some time, and I hope you manage to sort something out.

  3. cariad

    cariad Registered User

    Sep 29, 2007
    Sorry, just re read post and realise how hurtful 'severely demented' sounds. The last thing I want is to offend anyone. What I should have said is the patients there are all end stage dementia patients. Mam seems so out of place.
  4. Charlyparly

    Charlyparly Registered User

    Nov 26, 2006
    Hi Cariad,

    Firstly, it shouldn’t be too difficult to arrange 24 hour respite over a week. Many care agencies will offer this type of service, but I’d avoid paying for someone privately (i.e. the same person living in your house with your Mum whilst you’re away)

    The reason I say this is because whilst the idea of having just one person providing all personal care seems ideal, you’ve nobody else to oversee things or ensure its being done properly. That sounds very suspicious I know, but I wouldn’t like the idea of just one person providing this care in your home whilst you aren’t there.

    Additionally, your Mum and this person may not take particularly well to each other, which is very difficult when it’s a 1-1.

    Agencies shouldn’t be sending a different person in each and every day / night, but there should be a few different people who work in shifts over the course of the week and who become familiar with your Mum and vice-versa.

    I’d suggest that you speak with Social Services and see whether or not you’ll be entitled to any vouchers which may (note the word “may”) help towards the cost. They will also provide you with details of approved respite care providers within your area.

    Hope you manage to get sorted and enjoy a well earned break.

  5. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    Hi Cariad

    My husband has FTD but doesn't need 24/7 care. I was originally going on holiday without him because he didn't do holidays. This meant I had to arrange care for him. Social Services were very willing to provide care but they did keep stressing that it was only for two weeks.

    In the end Alan decided he wanted to come on holiday so I haven't been down that road yet.

    Hope you get it sorted.

    Love Helen
  6. foxhound

    foxhound Registered User

    Jun 26, 2008
    Just an idea - a bit short of the ideal, but might be a workable compromise. If you could find a hotel/cottage adapted for your mopther's physical needs, why not take her along and either engage a carer locally, or offer a sort of "working holiday" deal to a carer from your home base.

    You would have the change of scene, and a little bit of a break from caring, but without the awful gnawing "is she OK" worry I know so so well - which can actually ruin the best of holidays.

    It's an idea I've been toying with for a while, it be great to know if anyone else has tried anything of this kind?
  7. cariad

    cariad Registered User

    Sep 29, 2007
    Thank you all for your suggestions. You've broadened my thinking. I'm on the case!:)
  8. Bristolbelle

    Bristolbelle Registered User

    Aug 18, 2006
    Similar situation...

    .. sorry i cant offer advice on respite at home, but I thought I would say I am in a similar situation in that my Mum lives with us and I also have to think about my husband and two children (albeit they are older 19 and 18). I'm aware of how this can rub of on relationships and how divided you can feel etc. so any ime you want to chat feel free to contact me.
    I hope you find and answer.
  9. Charlyparly

    Charlyparly Registered User

    Nov 26, 2006
    Foxhound just reminded me - Sallie (forum member) does something very similar along these lines. Don't know whether she'd be able to help?


  10. candymostdandy@

    candymostdandy@ Registered User

    May 12, 2006
    west sussex
    Hi Cariad

    I am lucky as I have a wonderful carer that helps me with mum, and moves in to look after mum whilst I have a break....this we now have done twice and I am having 10 days away in august when she will move in..

    There is an agency that specialises in what you are looking for but I don't think I am allowed to say here so I will send you a pm, and give you details of their web site.
  11. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    coast of texas

    I did that last summer on our trip. When we were inlocations that mom wasn't really into.. I would arrange for a nurse from a local care agency ahead of time to come to the hotel and stay with her, it was for just a few hours and mom did understand in her own way. To make her feel safer I had a little one way radio that all she had to do was push a button and I was there to talk to. Back at the hotel tho the nurses talked with mom and some brought board games to play with her. She enjoyed those days, tho I admit I was the one checking in most of the time and she never had to actually use her "phone" to get to me.



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