Is respite a worth while stepping stone before the CH

Discussion in 'I care for a person with dementia' started by andypandy, Jul 21, 2015.

  1. andypandy

    andypandy Registered User

    Jun 28, 2015
    Any advice on whether it's worth it for mum to go into respite before we make the final decision of placing her in a CH. She's really going downhill fast with this awful disease, is respite a good option first? Did anyone find it worthwhile for their own peace of mind, I'm still wrestling with the opposing voices in my head where CH's are concerned, I know she needs this but I can't take that final leap just yet, I know she's still with us enough to hate the idea of it and be really upset that we have to do this, it will break her heart and ours too.

    Any advice would be brilliant.
  2. Dustycat

    Dustycat Registered User

    Jul 14, 2014
    North East
    Hi. I didn't do respite before placing my Dad in care but I was tempted. However my cousins put me off the idea as they did respite with my Aunt and they found it really unsettled her and she was more confused than ever. They advised me just to take the 'big' step. As it happened my Dad dictated the pace anyway. I guess everything situation is different and it's what works for you. X
  3. PeggySmith

    PeggySmith Registered User

    Apr 16, 2012
    Hi there. We weren't anywhere needing respite as MIL was managing ok with 4 carers' visits per day and family filling in the gaps. Then we had a massive dip including a hospital visit and MIL went straight into a nursing home on the advice of the professionals. She did settle quite fast in spite of it happening so suddenly for her.
  4. barny

    barny Registered User

    Jan 20, 2006
    Hi, I used respite a lot when my mum was alive. She lived with us and had VD for 15 years. I had children and a job as well as looking after mum. The only way to have a holiday was to put her in respite. I was very apprehensive the first time but she managed well and was not upset. The home she went to was where she went for daycare so she knew the building and the staff which I,m sure helped a lot . I would not tell her until the day we went and then said we were going on a little holiday and she was going to stay at her day centre. There was never a problem with her going. During the stay she was fully included in all the events that went on and would get a proper hairdo and her feet sorted out. I only ever left her for a week at a time and she seemed glad to see us all when she came home. The only problem was the loss of some of her clothes at each visit but that was a small price to pay for us getting a holiday and her being well looked after.
  5. marmarlade

    marmarlade Registered User

    Jan 26, 2015
    respite care

    my hubby went into respite care twice before he had to go into full care,after his second visit when he came back home all he kept saying was am i going back to stay with the girls[girls being the carers] on the day we took him for full time care he was very calm as we told him he was going to stay with his girls, as soon as we opened the door he was hugging a carer saying hello to other carers,as he already knew them,this made it so much so better for us as we didnt feel we were leaving him alone, to me the respite worked wonders and he was able to go into the same care home he had been in for respite,
  6. berkeley

    berkeley Registered User

    Sep 28, 2012
    Will let you know. Today I have made arrangements for my OH to go into respite on Thursday. This will be my first time to myself in 6 years. I am feeling really sick but I can't go on like this. Can't say anything else as can't see keyboard through tears.
  7. Claire

    Claire Registered User

    Mar 31, 2004
    My Mum went into respite care twice, and had been going to a day centre. When I went to bring her home from her second respite stay, I found her sitting in the lounge, completely relaxed and calm, and I realised that a care home, when it became necessary, would probably be OK for her. As it turned out, it became necessary soon after that, and she settled very well.
  8. dottyd

    dottyd Registered User

    Jan 22, 2011
    Sorry to hear that Berkeley.

    Mum went into respite as an emergency . She lived on her own but had taken to wandering the streets and the door alarm was useless.

    She never came out..

    She's fought it all the way too.

    I hate this illness and I hate her being in a care home.

    I had to go to the same home but downstairs where they don't have dementia. It made me feel so sad that here were normal elderly people just needing extra support.

    I could cope with that.
  9. daisydi

    daisydi Registered User

    Feb 25, 2015
    We used both day care and respite for my mum at the home she is now in. Day care started as a visit to the hairdresser and lunch and that progressed to a couple of days and then more. She went into respite a couple of times but the second time didnt come back! It made it much easier as she was familiar with the staff, residents and routine. I think it was the kindest way to do it as she wasn't all of a sudden living with a bunch of strangers. Good luck
  10. exhausted 2015

    exhausted 2015 Registered User

    Jul 5, 2015
    stoke on trent
    Hi andypandy I really can sympathise with you, I have the same dilemma with my dad we have our first respite comming up this weekend, when we first put it to him he just said "I will do want you want me to do " but afterwards I could see he was worried I have not mentioned it to him since was going to leave it until Sunday when we take him. I am really anxious about him going and I hope to god that he will be Ok but this is the only way I will get a rest as he calls me frequently through the night and I don't get much sleep and then in the morning it's another full day of caring ect ect
    I will post after dad has had his week away to let you know how it went
    Hope this is of some help to you. Xx
  11. Gknee

    Gknee Registered User

    Jan 29, 2014
    North of England
    Respite 'holiday home'

    Hi. The respite option was forced on me by mum being found in the road in her PJs late at night swiftly followed by the intervention of neighbours and the local police. It was clear her home wasn't a safe place and the duty social worker suggested respite for a week until door alarms were fitted. Mum was much more positive than I had expected, despite having no recollection of her wandering. I described it as a 'hotel for people who need a bit of extra help', because 'care home' has negative connotations for most of us.

    I explained her house needed to be made safer for her, and took her to her nearest care home. After a day, she loved it. There were chickens, ( she spent her childhood on a farm) gardening activities and a hairdresser. She was 'adopted' by a small group of male residents who played dominoes and because she used to play long ago, they included her in their games and helped her. The staff were incredibly helpful and put the tennis on TV for her when she forgot how.

    She was only there for a week, and is back home now with alarms fitted. I was dreading this time coming, but feel easier now that she has had a positive experience. It has prompted me to encourage her to go to daycare as she enjoyed the social aspects of her time there, and had previously refused to even try it. And now I don't feel quite so apprehensive about doing it again, or about how it will be when the time comes for her to be permanently looked after in a care home.

    It wasn't respite for me as I visited every day, but she didn't remember that I had been there at all. Overall I'd say it was a much more positive experience than either of us had expected. I hope this helps.

    Good luck - whatever you decide, remember you are making these choices to keep your mum safe.
  12. Gknee

    Gknee Registered User

    Jan 29, 2014
    North of England
    Frequent phone calls...

    Hope you don't mind me picking this aspect out of the thread, but mum calls me from around 5am to as late as 11pm. How do you cope? Part of mum's VaD and Alz symptoms are panic attacks, and every time she feels wobbly, she calls me.

    I have had to give her my mobile number - it is on a huge sticker on her phone as I'm at work all day. She is always reassured when we have spoken for a few minutes, but then forgets she has called, and calls again. One of the problems is that her phone bill is huge. Mum is self-funding and is close to the point of having too little left to pay her care bills. Any advice welcome. Thank you.
  13. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    reply for Gknee

    Gknee, if you do a search on "phone calls" you will turn up a bunch of threads talking about the frequent, incessant, difficult phone calls many here have dealt with.

    My mother, while still living alone at home, had a huge anxiety problem (which I now know, was caused by trying to cope with dementia, NOT a separate anxiety disorder, and it's almost completely disappeared since she went into the care home) and we also had the frequent phone calls from her.

    As you say, part of the difficulty is that the person with dementia, cannot remember they have just talked to you/called you/left you a message, and so they call over, and over, and over.

    One suggestion I found was to have a dedicated phone line (landline or mobile), set it to ring only a very short number of rings before going to voice mail/answerphone, and record a message like, "Hi, Mum, I can't talk right now, I will call you soon, " or "Mum, I love you, everything is fine, I will call you tonight at 5 pm" or whatever might be appropriate for your situation.

    Another suggestion, and you may not like this, is don't answer the phone every single time. Many people report having to turn off the ringers on their phones, especially at night, so they can get some sleep.

    Even now that my mother is better, and in the care home, we still get the occasional spate of distressed phone calls. We have caller ID, so we know when she is calling. I simply don't answer the phone when she calls, at all. Sometimes my husband will answer but mostly my mother leaves messages. Interestingly, sometimes talking to us is more upsetting for her, than just leaving a message--I think it has to do with her getting into a "loop" on the phone with us, and going over and over something. The good news is that I have mostly stopped crying every time the phone rings and I see it's my mother calling.

    I don't have suggestions about the phone bill but others here will know. I hope you're able to find something that works for you.
  14. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Could you contact the phone company, BT or whoever and ask if there is a better calling plan which might reduce the overall bill? I know it can be tricky if you're not the account holder, but if your mum would be able and willing to co-operate with the process by telling them she's OK with them talking to you you might be able to get a better deal.

    My mum never called as often as you describe but she always rang the mobile rather than the landline and the bills were mounting up. Changing the plan did help a bit. She was always very careful with money so was persuaded that it was was a good idea to stop the phone company 'ripping her off' with overcharging.
  15. Gknee

    Gknee Registered User

    Jan 29, 2014
    North of England
    Thank you

    Pickles and Amy in the US - thank you both for your ideas. A dedicated phone is a good way to go!
  16. jackym

    jackym Registered User

    Aug 13, 2014
    I'm also considering my dad going into respite but have held off so far because my mum, who has Alzheimers, is dead against it. Although she does not have capacity she believes she is still my dad's carer. I am being advised that a CH is best for my dad - he has had two falls in the past 3 weeks - but my mum will lose her remaining sense of purpose. Has anyone out there experienced this situation??
  17. Aussie66

    Aussie66 Registered User

    Jul 3, 2015

    I have fond all the comments very helpful as my husband will be having his first day care visit very soon and we are also setting a an emergency rest bite in case I am ill. I hope to trial this once he is used to the day care. It was hard making the decision but as I cannot leave him even for an hour something had to be done.
  18. jhind

    jhind Registered User

    Aug 15, 2012
    Respite - try it.

    I have used respite for my wife (advanced VD) for 3 years, 1 week every 2 months.
    Was v anxious first time, but much more relaxed now. Don't keep visiting, get away if you can. I dread losing her to a care home. Combination of day centre (3 days per week) and respite, plus good paid-for care, has kept me in fairly good shape, and helped to keep her at home. Do try respite, it will probably work much better than you expect.
    (This is my first contribution to Talking-point.)
  19. antbrod

    antbrod Registered User

    Jun 20, 2015
    Dealing with Dementia

    Hi, I have recently wathed a video on youtube called Alive Inside and I would recomend that every Dementia carer should watch it.

  20. Karlie

    Karlie Registered User

    Sep 9, 2014

    My mum had to go into a hospital because of a fall, her dementia got considerably worse. She was assessed and it was decided she should go unto a nursing home. Her social worker said she could go into respite care temporarily but she really wanted my mum to be in the place she would live permantly. Change seems to be a big problem with dementia sufferers so it seems the best thing is not to have too many changes.You must comfortable with the home you choose you are the person who knows your mum best and the things that she still can enjoy you will know when you find the right place.

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