A week of "respite" (so-called "care") - advice please!

Discussion in 'I have a partner with dementia' started by Frank68, Dec 13, 2016.

  1. Frank68

    Frank68 Registered User

    Jan 28, 2013
    South Coast
    I feel a bit of a heel coming on the Forum when I have not posted for ages - only excuse is that wife Sue has gone down hill of late - and had some very chaotic weeks and nights which left me exhausted... plus my ipad and laptop packed up! Anyway..

    My kids (2 live abroad and the other 30 miles away) and our carer felt I was getting in such a state a week of respite was indicated. Social Services came round - the lovely lady agreed and gave me the Hants Rate for a week to arrange a week for Sue.

    Due diligence - I trawled the net, read the CQC reports - rang countless Homes most of which seemed to have given up on respite because of tight profit margins. Then I found one - 30 minutes from home. Ticked the CQC boxes - a few good references - visited, and although a bit tatty the Manager seemed a good sort and answered my prepared questions OK. So I went for it and took Sue in for lunch a couple of days before taking her on a Saturday for a week. I handed over the excellent Altz Socs "This is Me" leaflet plus a load of info re Morning and Nigh Routines: Washing Routines : Food preferences etc.

    I had a reasonable but tearful week at an old friends, though most of my brain was back home...

    Sue has moderate to severe AD, little speech and communication though responds to stimulation. She also seems happy to look nice - which she always has. She was formally diagnosed 2010 but signs present since 2006 - she is now 71 years.

    The collection Saturday I was shocked: at 10am, I peeked through the window and Sue was sitting at the breakfast table staring blankly at a wall - the other old lady at the table was asleep. Sue's hair was dirty and in rats-tails - if it was washed once in the 7 days I would be surprised.. She smelled, not surprising as I had sent 12 pairs of knickers and only 4 dirty pairs were in her laundry bag (I had opted to take all laundry home to avoid loss) - 2 of those pairs were covered in poo (she has occasional poo accidents - maybe once every two weeks). I had send a good supply of pads, but again not enough were missing to have had a clean one daily. Worryingly, her meds (in Nomad pack) had not been given on one night - and they home did not even have the nous to see that and remove them before giving me back the pack!
    Worse: Sue was like a zombie - and it has taken me 2 weeks really to get her back to a state similar to that which she was in before she went, i.e. I do as much as I need to for her - showering, washing etc, but she likes to help- herself dress with me me assisting, and she'll peel some veg if I'm not too fussy. She is outgoing and is normally smiley even if she hasn't a clue who we are seeing - she scowled for about three days...

    Now I'm not daft (yet!), and do realise that a good deal of this is probably down to disorientation which is a big problem and why we mostly stay at home and don't travel much any more. But am concerned that she did not get enough / any interaction or stimulation. Our Carer visited twice and daughter once and on no occasion did they observe any activity taking place - despite the impressive board in the foyer which listed all sorts of daily activities. They both found Sue very "switched off". On the Thursday daughter mentioned about Sue's hair but was told she had missed the hairdresser for that week. The manager was off sick, but that may account for something - but surely there should be contingencies?

    When I picked Sue up, the very junior worker who eased us off the premises asap, ramming all Sue's clothes into her bag including her outdoor coat (it was in that freezing weather!), said upon my enquiry: How has she been? - "O she's been no trouble at all."
    It has now been two weeks back home - no-one has rung to check all well and satisfactory. I imminently expect the Bill for £700.

    Questions: Should there be a Care Record for Sue? Would that detail her personal care / meds / activities / eating? Can I ask for that? Better to ask now than after the Bill comes? Should I talk / complain to the CQC - their last inspection was over a year ago and managers have changed? Should I complain to the Home and withhold part payment?

    I'm very upset with this experience and will not do it again in a hurry. But I do get exhausted (don't we all?) with the incessant caring-demands from morn till night - and sometimes in the night too (though thats better with new meds).

    I'm sure many of you have made better choices than me - and maybe the fact that this home could offer respite so readily was a sign it could not fill its beds - but I would really value hearing if any of you have had similar experiences.

    B....y Alzheimers!

    Christmas Blessings to all.

  2. Slugsta

    Slugsta Registered User

    Hi Frank,

    What an awful experience for you! I was a bit worried by your comment about other here making 'better' choices - everyone here is walking their own path and I don't think that any choice is 'better' than another, we all do what seems best at the time.

    Caring for someone 24/7 is utterly exhausting and you needed a break. You did the best you could, so please try not to beat yourself up about that.

    I'm afraid I can't give any advice about your specific situation - but I am sure others will be along to offer help soon.
  3. marionq

    marionq Registered User

    Apr 24, 2013
    That was an upsetting experience. My husband had two weeks in June in a very good home but even so was incontinent for weeks afterwards from disorientation. It is so worrying yet to continue caring we must get a break now and then.
  4. SnowWhite

    SnowWhite Registered User

    Nov 18, 2016

    Oh Frank that sounds awful and I do feel for you! Wouldn't you think that now there are all these checks and CQC reports that poor places wouldn't exist!

    Months ago my elderly aunt was telling me how unhappy she was with the care home where my Uncle is (he has dementia). I told her she must complain which she did but things didn't improve. He was left shabby, there was no soap, his toilet and washbasin were filthy, new shoes disappeared and countless other things. I googled his home and in 2012 they had a very poor report and here we are in 2016 with nothing any better. Now it seems following so many complaints the county council are involved and it looks as though it might be closed down.

    By coincidence a neighbour of mine had to kidnap her elderly brother from the same home as he was being neglected and she quickly got him into a very good home. The new care home owner went with her to "kidnap" him and took loads of photos and she refused to pay the last few weeks of his bill and they never pursued it as they knew they were in the wrong and they had evidence.

    I would complain to your council about this home and I'd also withhold the £700 for now because you didn't get what you thought you were paying for an dit does sound like your wife was neglected.
  5. Katrine

    Katrine Registered User

    Jan 20, 2011
    Frank, I am so sorry to hear that Sue was not well looked after during your much needed respite break. We had to place MIL in a CH funded by SS for 12 weeks until we got a deferred payment agreement in place, whereupon we moved her to a better home. We still feel bad about the neglect she experienced, and which we could only mitigate by regular visiting and nagging the manager. We wondered if we were being overly fussy about hygiene and dignity until we got her to a better CH and compared the difference in standards.

    Have you considered the possibility of live-in respite care for next time? If for example you used the agency that I use for my mum's full time live-in care it would cost about £600 in carer pay, £110 in agency fees, + carer's travel costs, + carer's food and laundry costs. The carer would need some time off each day, but sometimes this can be flexible so that they have perhaps a half-day off instead. If you would like to know which agency we use, please PM me. They are familiar with at home live-in care. A conversation with them would perhaps give you some options to consider. Katrine x
  6. 1mindy

    1mindy Registered User

    Jul 21, 2015
    It is so difficult to get it right. I had the local as booklet with all the local care homes in for me to trawl through. My daughter visited some I others. When the mental health nurse came to see me I discussed with her and she agreed with what we had seen. My oh went on respite three times and loved it, and was well looked after. He actually is now in full time care in one of his respite home. You do need to complain to both the home and we. Don't give up, you need that great. Good ones are out there finding them can take some work though. The one closest to our home was frightful, he is now some 20 miles away but it is wonderful and the staff are amazing.
  7. Casbow

    Casbow Registered User

    Sep 3, 2013
    My husband went for a weeks respite at the beginning of September. When I went to pick him up I was so shocked to see him. He was on his own in the garden. Unshaven for probably the whole time he was there. Most of the clothes i had sent where unused. Including that he had only worn one pair of socks all week. Everything had his name on but there were 4 items of clothing missing and his glasses (unmarked)
    missing. When I asked a senior care person they said they hadn't seen him in glassis since he had been there.I week to turn him into a man that was incontinent
    probably because no-one showed him where the loo was (in his room) or asked him if he needed the loo. I am more upset because although I asked for the respite in good time I never heard anything so I rang to ask and they had trouble finding a vacancy. The one they offered had 4 members of staff that I new and used to work with at a care home 10 years previous. I thought he would be ok there as they were all good carers. But no it let us down.x
  8. Frank68

    Frank68 Registered User

    Jan 28, 2013
    South Coast
    Thanks Folks!

    Well I plucked up courage and I have made full complaint to both the Home and CQC! I had a "We are investigating.." from the Home, and several acknowledgments from CQC. I will update when I learn more, meanwhile I have not paid the Bill and alerted the Home to that fact.

    Casbow - Just like you I found it so difficult to find a place - thought I had done all the homework - but no. Your shock at the state of your husband was a mirror of my feelings exactly. How can they not wash / shave / change the residents? You might think they would go all out to impress on the respite so that when "the time comes" you might choose there. After a few weeks my Sue is back to "normal", i.e. as she was went to went in, but it has been a struggle to re-establish routines and her (usually cheerful) mood. I do hope your husband has recovered?



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