My Injury means Richard has to go into respite care

Discussion in 'I have a partner with dementia' started by padmag, Aug 20, 2019.

  1. padmag

    padmag Registered User

    May 8, 2012
    245
    nottingham
    I have looked after my partner Richard for the past 10 years he has suffered with Alzheimers. Unfortunately I twisted my knee 6 weeks ago and it has disabled me and I am now housebound. My knee is in a locked position as I cannot bend it. I have struggled since my accident to care for Richard. Initially the GP said it would be a lot better in 4 to 6 weeks when the swelling has gone down. As it's not, I have been put forward for an emergency scan (2 weeks ago). However, I've reached breaking point with the knee situation and am arranging for respite care for Richard asap, so I can go to A&E and hopefully someone will be able to help me to find out what is wrong with my knee. I have no quality of life right now as I have been housebound for 6 weeks, on very strong painkillers, using a stick to move around. I have still had to pull Richard out of a chair, clean and shower him, and he leans on me to walk........I can't stand the pain anymore I actually scream with it at times when I am helping Richard. If I could get a scan I have read that I could go privately and pay in installments which i would do. Sorry to ramble, it is a nightmare situation that we as carers can come across and dread, just shows how vulnerable we are.
    I spoke to the social worker who sort of laughed and said 'yeah i have lots of things wrong with me too' !!
    His advice was don't book Richard for respite now wait a while as I won't be able to resolve my knee problem in 6 weeks, in other words carry on! A care home manager is coming to our home to assess Richard, so I presume he will be in respite late this week/early next week.
     
  2. kindred

    kindred Registered User

    Apr 8, 2018
    2,179
    Of course. Being a carer often blinds us to the nature of our own needs and this is an emergency. I am so sorry about the social worker and the crass response. Get the help you need as quickly as you can. I am sorry about your pain and glad the care home manager is coming. THey usually get things moving quickly and can probably arrange transport for RIchard.
    Warmest, Kindredq
     
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,167
    Merseyside
    I hope things go well with the manager & you get Richard settled quickly.
     
  4. PalSal

    PalSal Registered User

    @padmag So sorry to hear about your knee. I hope you get the support you need.
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,437
    Female
    Dundee
    I’m sorry to hear your news @padmag. I hope you can get things organised easily and hope your knee begins to improve soon.
     
  6. padmag

    padmag Registered User

    May 8, 2012
    245
    nottingham
    thanks for your replies and concerns kindred, Cat27, PalSal,Izzy.
    Richard is going into respite tomorrow, so for me it's a really weird day and I have butterflies in my stomach, and couldn't sleep last night. Trying to concentrate today to gather all he needs, but I don't need to worry too much about that as I can get someone to drop off clothes etc another time as long as he has everything for his immediate needs. The manager seemed really nice, but there is always that fear, I won't really know until I see him there. Going to A&E Friday as my emergency scan hasn't materialised.
    The manager at the care home said Richard could continue going to the day centre, if not the 5 days, but maybe a couple of days, i wondered if anyone else has done this?
     
  7. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,910
    Nottinghamshire
    Hello @padmag

    I’m sorry to read about your knee injury. I had problems with my knee last year while I was still caring for my dad and it brought me close to breaking point! I’ve also had knee problems my while life (hypermobile joints) and I’ve found that GPs and A&E have been pretty useless when it comes to treatment just saying it will get better given time. It didn’t.

    Eventually I decided to go to a chiropractor who through manipulation, acupuncture and an exercise program has managed to get my knee back in working order. It wasn’t cheap but it was worth it.

    You’ll need to go to A&E for X-Ray before a chiropractor will treat though.

    I hope Richard’s respite goes smoothly and gives you time to recover.
     
  8. padmag

    padmag Registered User

    May 8, 2012
    245
    nottingham
    Wow sounds awful. I have hyper mobilty too which has affected most of my joints. Trying to be positive and hopefully on Friday I will at least get an x ray. Looks like I may have to go down the private route (not easily done for me) but quality of life is most important. I have been resisting respite but after 6 weeks of pain and little sleep I just have to do something to get myself better. Thanks for your input.
     
  9. padmag

    padmag Registered User

    May 8, 2012
    245
    nottingham
    Well Richard's move into respite care went well and he was happy to be there (still doesn't make me feel ok, but it is necessary at the moment). I came home and felt utterly lost. The social worker has emailed me to say:-

    'I must also advise you, that as there is no end date, Richards respite is for only 6 weeks , you will need to consider contacting the benefits agency as, technically he is not living in the community. This may impact on his benefits payments.'

    Has anyone had experience of this? Even though Richard has been granted 6 weeks respite, I will still have to pay towards it plus a top up fee of £50, so to also lose the high rate attendance allowance and my carers allowance will be a big hole in our budget.
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,352
    Kent
    I`m not sure but think once the LA is funding care, benefits would contribute to the care.

    I certainly wouldn`t want to pay a top up fee in any case, especially if you lose your carers allowance

    I could be wrong though and suggest you call the Helpline. They will be much better informed.

    0300 222 11 22
     
  11. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    My husband’s PIP has been stopped. It should be restored because he is fully self funding. But first the DWP have to check with the Care home that he is self funded. If his Care home was paid for by the LA (for example) he would lose his benefit - that’s my understanding.
     
  12. padmag

    padmag Registered User

    May 8, 2012
    245
    nottingham
    Today is the first day i have visited Richard in respite. I can't drive at the moment so my daughter dropped me off. Feeling very miserable now as although he seemed ok he just couldn't keep awake and he was hallucinating - sort of half asleep and making movements with his arms, he hasn't done this before. He didn't recognise me either. Feeling unbearably sad and did shed some tears whilst I was with him but he didn't notice thankfully. He was unshaven ( the manager said Richard didn't want the carer to shave him which is ok) so I shaved him with his electric shaver - he could just about do this himself whilst at home, but not now. I wonder if this is just a phase or a sudden downturn with change of scenery/people. He is placid as usual and fairly easy to manage for the carers, and they agree, which should make me feel easier but it doesn't.
    What a mess! Have received no help from NHS re my locked knee, they wouldn't even xray it. So have booked for private consultation and scan with surgery if necessary, courtesy of a loan from daughter as I can't carry on being housebound. Also i hope richard picks up so I can take him out in the car to a park nearby when my knee is on the mend and I am skint!
    Feeling like I'm slipping down a dark hole, so am trying to have positive thoughts so i can help Richard even if he is in care right now.
     
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,910
    Nottinghamshire
    I recognise your desperation @padmag. I was at the end of my tether last year with bad knee and having to look after my dad. My Dad was fairly placid (and quite charming) most of the time but it was sad watching him fade. Richard is safe for now and you need to concentrate on your own well-being. I hope you get effective treatment soon. I know how awful it is when ones body lets one down.
     
  14. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,167
    Merseyside
    I hope you get your scan quickly @padmag
     
  15. padmag

    padmag Registered User

    May 8, 2012
    245
    nottingham
    Update on mine and Richards situation. Unfortunately Richard has had a steep decline since being in care. He has gone , from being able to eat independently, fairly mobile with help from me to support, able to speak and smile, to being fed soft food only, unable to swallow (salt test in progress), no speech and immobile. I'm stunned at this downturn. He has been tested for a uti twice both negative, but he has some aspiration when Dr. listened to his chest. On antibiotics for 1 week, then changed antibiotics for this week. If no better Dr says will do a blood test at end of this week. I go to the care home every day to help feed him and get the carers to mobilise him. Other than that there's nothing I can do, feel extremely guilty as he went in walking talking and smiling now virtually nothing and cannot keep awake.
    I have had a scan on my knee privately and am awaiting the results.
     
  16. canary

    canary Registered User

    Feb 25, 2014
    10,245
    Female
    South coast
    Please dont feel guilty, you couldnt look after him while you were having your knee sorted out.
    I suspect that the infections are causing most of the problems - he may improve once the infections are gone
     
  17. padmag

    padmag Registered User

    May 8, 2012
    245
    nottingham
    Thanks Canary. I just hope he hasn't gone too far seeing him now even if my knee was better I couldn't cope at home with him. I will have to be patient and see what happens as I do not have any control over this situation.
     
  18. Moggymad

    Moggymad Registered User

    May 12, 2017
    361
    Female
    Hi @padmag in my mums carehome as I watch the residents coming into the dining room I have been shocked at the sudden deterioration of some of them having to be brought in in a wheelchair, needing to be fed etc. when previously they could do these things for themselves. But what has surprised me even more is seeing, a few weeks later, those same people back to how they were previously. I have no idea if they have been ill with infections but if so then I would have hope that your husband will regain his previous level.
     
  19. padmag

    padmag Registered User

    May 8, 2012
    245
    nottingham
    Thanks for that insight Moggymad, hopefully that will be the case for Richard. None of us really know what is going on in their brains, perhaps it is to do with adjustment that they are trying to cope with and on top of that an infection. I know this disease is progressive but I am not prepared mentally for this massive downturn. I want the best for him and don't want him to suffer unnecessarily.
     

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