1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

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Like a Hyperactive toddler...

Discussion in 'I care for a person with dementia' started by Rageddy Anne, Apr 27, 2016.

  1. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    Just waiting and hoping we might be able to get some residential respite care for my husband. We devised an informal visit to a specialist Dementia Care Home, with me suddenly remembering a GP's appointment and dashing off, leaving him with his familiar friend, the one who takes him out and about. That made it easier to then leave my husband with a new "friend" at the home, so there was an hour or so's assessment. That was Friday, and now, Tuesday evening, I haven't yet heard what they thought his needs would be, though I can't see it being less than one to one.

    If he is accepted the home insist on two weeks....so now I'm worrying about him being distressed there, and me subsequently finding it more difficult to care for him back home.

    It all happens at once doesn't it? Yesterday, after weeks of waiting and asking, we finally got a visit from a new Community Psychiatric Nurse. What a contrast to the previous one....this one listened to me, and seemed to understand everything about Dementia. Her idea was to increase the Memantine, and continue the Mirtazepine, at least for the present.

    It seems simple to me currently at least; one to one care at home, but with someone else to relieve me at times. But that just doesn't seem to be available, and we can't afford much more than the 30 hours a week that we fund privately already. I feel aggrieved that I seem to be considered a Resource, and not a 76 year old having to ignore my own health needs.
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,056
    Yorkshire
    Hi Raggedy Ann
    this all sounds pretty positive - especially having a CPN who listens to you :)

    do take up the respite if at all possible - and keep looking on it as a positive, so that your husband picks up on the positive vibes - who knows what the future holds; the break for him may mean he comes home refreshed too

    This very much struck a chord:
    so please do as much as you can to take care of yourself and tell everyone you come into contact that you won't be able to be a carer if your health breaks down

    best wishes
     
  3. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    #23 Rageddy Anne, Jun 8, 2016
    Last edited: Jun 8, 2016
    Thankyou Shedrech for your kind words.
    Just discovered the lovely CPN is getting married on Saturday, so presumably there will be a honeymoon afterwards...
    And my hopes of respite...well, no word back from the Care Home. They assessed his needs on Friday, , so why nothing? They agreed in principle to respite starting next Tuesday, so wouldn't you think I'd have heard by now?

    Update; just heard they want the main care person to assess whether they can manage it without resorting to one to one care which will cost a lot more. Looks like I'm being set up for a huge bill.
     
  4. Essie

    Essie Registered User

    Feb 11, 2015
    566
    Contact them Anne, at least you'll know where you stand even if it's a (very disappointing) No, better than just waiting. Ring them and say "I'm assuming all was OK with the assessment as I haven't heard to the contrary so we are on for next Tues as arranged......" ;)

    Couldn't agree with you more about being seen as a 'resource' rather than a person - in fact I think that should be printed out and given to every health care professional in the country - wish I had a good answer for you Anne.

    Will keep my fingers crossed for the respite.
     
  5. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    R-Anne -- nothing useful to add but just wanted to send a hug and huge, huge sympathy to you facing this wall of indifference and inefficiency.
    Are there no dementia-friends in your area who could offer you a few more hours respite? Or just a friend-friend?
     
  6. Essie

    Essie Registered User

    Feb 11, 2015
    566
    Fingers crossed the main care person is up to the task without further assistance....

    Meant to say too that I'm so pleased the new CPN is a decent type - lets hope the honeymoon is a short one and she is soon back on the job and helping you out lots more.
     
  7. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,192
    Female
    Chester
    It is quite common now to get married and then have the honeymoon several weeks later, as it means it isn't as rushed going away, or even a 'mini - moon' and then later on a proper honeymoon so don't assume she is going away now. So if you need to contact her keep trying.
     
  8. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    Have been through all the hoops with a local Care Home for some respite, various assessments etc, no promises but have been strung along with a provisional date dependent on yet another assessment, and then a meeting. We had been provisionally promised a fortnight, starting next Tuesday. After all the waiting I was told at 5pm today, Friday, that they can't take him yet, as two people who were due to leave have had to stay due to unforeseen circumstances.

    Lots of us know how that feels....Husband has been raving for hours on and off, every day for days. This afternoon I actually rang the Community Psychiatric nurse who came to see us last Monday. She wasn't there, and I was given another number to ring, so I asked them to log my call. " why?" I was asked, so I said " Because I said my husband was raving and I was desperate". Suddenly I was able to speak to the Consultant. Upshot was I gave him a mirtazapine a bit earlier than usual, and was asked to let the
    Consultant know how the respite plans worked out.

    Husband is asking, demanding, begging to go home, approximately every 40 seconds. Time for a double paracetamol, all I can think of.
     
  9. Essie

    Essie Registered User

    Feb 11, 2015
    566
    Oh Anne, I wish I lived next door and could just come round and help properly! You sound exhausted and at the end of your tether my love and that cannot go on can it? You did the right thing saying it how it is and making the CPN's colleague listen to you and acknowledge it. I'm sorry the respite hasn't been plain sailing but from what you've said they haven't said No so your 2 weeks are still on, just not from Tues although I can hear the desperation from you. Please don't keep 'managing' if you really are at your limit - do call the out of hours team if you need to - you do and have done an amazing job but you are not super human.

    Sending big hugs ((((Anne)))) take care
     
  10. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    RANT WARNING!!

    After a long day with husband mostly angry about just about everything, from his shower in the morning through to the usual demands that we go home immediately, we went to bed not long before ten. A familiar and long trusted painter had been here, painting window frames and other woodwork, and he must have heard my husband shouting at me indoors. He understands about Dementia a little, but didn't realise how bad it could be. Our daughter in law dropped in, and my husband said very little....he used always to love her visits but today he didn't know her, nor the familiar dog.
    We had a milky drink at bedtime and he had two paracetamol, and he got into bed reluctantly, slept for a while, then woke around eleven, fiercely indignant about the terrible phone system, saying he'd been trying to make calls for hours and it was a disgrace to be let down so badly...and what did I intend to do about it, as it was very urgent. I pretended to make a call, said my husband was very upset because his business was very important, and then pretended that they were apologising, and promising it would be working by morning...he went back to sleep, but here I am, wide awake with a splitting headache.
    Over the last few days I've been castigated for sitting down and not pulling my weight when everyone else is working so hard( we were the only ones on the house, and I had been on my feet and busy for hours). I've been in trouble for wasting time when we had something terribly important to do...He wouldnt say what it was because I should have known, and I was letting him down, again. I've been pushed and jostled by a supermarket trolley being pushed at me, shouted at in a car park so that people noticed, and hustled indoors when discussing things with the mild mannered chap who sometimes helps in the garden. Sometimes I can manage his indignation and even make him laugh, but it's like walking on eggshells, and I can't even sit on the loo in peace! Today when I tried to wash my hair that I hadn't washed for a fortnight, he ended up slamming the door and out in the garden shouting for someone to come and help him.

    If only there was something to pacify him. He's just woken again, but this time has settled down again after he knew I was here.

    What's going on in the world? We can't watch TV, it's too unsettling. Who is Donald Trump? What are people saying about the referendum?

    So, no respite next week...Hope I can hang on to my last shreds of good humour.
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,597
    Kent
    Anne I hate to say this but it sounds as if the only respite you will get would be for your husband to be admitted to an assessment unit for 24/7 observation . There is no way you can continue managing this behaviour indefinitely and there is no way your husband should be so tormented either.

    I think it needs more than a simple case of respite to improve the situation for both of you and am surprised it hasn`t been suggested.

    A stay in an assessment unit is upsetting all round but it could arrive at some sort of help for his behaviours.
     
  12. Essie

    Essie Registered User

    Feb 11, 2015
    566
    Anne, I have come on here this morning specifically to check on how things are for you and your husband so I'm glad you have posted. I'm also very glad Sylvia has posted because she has summed it all up - for your needs and for hubby's needs Anne the current situation isn't working at all. Intervention is necessary to stop this continual suffering for both of you and find a new way of moving forward.
     
  13. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Oh, Pam, I'm shocked. My husband used to be up almost on a 24 hour basis in the summer. In the winter, I'd hardly see him out of his bed, just as if he was hibernating. The sundowning was much, much worse in the spring/summer months.

    Nobody believes a person is unable to go to bed. I believe the ten months thing. Just try and get a professional to believe it. Gosh. How do you manage?
     
  14. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    One to one care is what tipped the scales in our favour last year, Anne. After 6.5 years of caring with absolutely no backup, it was when hubby went in for that hip operation when things started to sink in at the hospital. When I told them of how he ended up in the hospital, someone asked me how long I'd been caring. I'm sure that's how it all started. Things went on from there with assessments and a couple of hospital SW's getting involved who pushed all the right buttons to get him a placement. We went for respite first to get him sort of settled down, then it moved to permanent care. Once he'd moved to the CH, he never came back home again, and is still there getting excellent care. It really is that good. I'd love to live there myself.

    Are you thinking about 1+1 care for your husband in a facility eventually, Anne?
     
  15. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    I've seen 1+1 care in a hospital. If you're self funding, it more than likely will cost extra, Anne. In hospital, before hubby went into the CH he's in now, it took 3 nurses to grab his arms so he didn't run out of the ward with me! His mental depletion was very serious at that time, and he had to be watched as he'd only just had his hip op. Imagine it. Operation performed one day, he was getting himself out of bed on his own the next. He never knew he'd had the op. It's a real eyes and ears job to provide that kind of care. Plus, if any of their charges need help with walking, it might take two people to help the resident walk about. Plus walking aids and wheelchairs have to be provided at the home, so it's a lot of unseen work.

    Don't take any of your own walking aids to a home, as they do go missing! You can label them all you like, but with a whole floor of people with the same illness to care for; personal items are rather low on the list of anyone's worries.
     
  16. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Anne, I'm reading through all your comments and answering them as I go. This thing about finding a placement has nothing to do with you. Even at my local hospital, the SW's were ages trying to find us somewhere. Time after time, we were all turned down, which is why I had to allow him to be placed so far away. Nobody nearby wanted to know. But we DID get somewhere in the end, and the home is lovely. Believe me, you could ask my two SW's here how hard it is finding somewhere. When it's your paid job to do it, you manage. After you've spent years caring alone, or as near as damn it; you then have to find the mental muscle to get the extra help you need. If there's anything I can look up for you, do please let me know.

    Now, what else have you said? I'm off to find out!
     
  17. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Just read your rant comment, Anne. This needs sorting, love. I know you're exhausted, and it's the weekend, but can I do anything/look anything up for you? No doubt, you're well busy by now, but if you get a chance to hop on, either PM me for a chat, or tell me if I can help in any way.

    Are family available for crisis help?
     
  18. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Anne just checking up with your posts, l was in the same postion as you 10months ago, my hubby went in for respite, after 2 weeks the relief was so great, l new l would not be able to look after him at home. I made a very hard discision but it was the right one, we have had many ups and downs, but he has settled in the home, l enjoy visiting him, so nice to go home and be at peace, after 12yrs of caring on my own, we have been married 52yrs on Monday, l tried to tell him, he didn't have a clue to what l was talking about.
    See how you feel after 2 weeks respite, then you will know how it feels, l didn't visit for 2wks, l was like you very exhausted.
     
  19. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,056
    Yorkshire
    Hi Raggedy Anne
    just read your rant too - and can only echo what the others have said; contact out of hours, contact CPN, contact consultant as soon as you can and read them your 'rant' - I do think it's significant that the consultant said to keep him informed, so do exactly that
    sorry, it's easy to be bossy when writing - I appreciate it's not at all easy to be dealing with everything there and then
    best wishes
     
  20. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    Thankyou, lovely kind people....sorry to rant.

    I'm pretty sure a short period of respite would result in me recognising that I can't go on managing at home.

    The assessment, to judge medication and care needs, will surely result in us needing to find funding, whatever is decided, and wherever he goes.

    He's pretty healthy, physically, and he wouldn't have agreed to POA for health and welfare unless it had been reciprocal, and I wasn't sure. A friend of mine has said the people who do the assessments for CHC funding here are so short staffed due to people on sick leave, that people needing an assessment have been waiting for four months. Anyway, its doubtful that he'd qualify.

    One of my husband's regular obsessional worries has been finance, so I haven't daren't get out papers or make phone calls, or invite anyone in to help, as that would make his worries worse. So I haven't been able to sort out the finances that he insisted on managing himself. I know he got rid of a financial adviser against my protests, and seems to have destroyed all paperwork relating to him.

    I think our remaining funds would last for about three months, not much more, and less than that if we needed money for the car, or to replace our elderly boiler.

    So where would that leave us? I was planning to use the respite to find someone to help me with the finance side of things. But without the respite.......

    It's raining, but the garden looks lovely. It's my great comfort, so I'm off to the Positives thread for some cheer....
     

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