1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,128
    Kent
    This is what happens so often @Wifenotcarer

    One minute you`re doubting your decision and the next minute you realise it`s the right decision.
     
  2. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    They tell me that OH has settled fine into the respite facility but I am advised that I should not rush to visit as it would just unsettle him. I have yet to relax, very jittery and jump at the slightest noise. I keep waking in the night and panicking when he is not there.

    Today we were both booked for B12 Injections at 9.40 and 10.00am. I was up early, showered, dressed, breakfasted and ready to go when BOOM, I could not release the handbrake on the car. Tried and tried, totally stuck. So phoned the Health Centre to say I would be late but would get a bus. Not good enough. Appointment canceled and rescheduled in two weeks.

    I had intended to visit the care home in the village on the way home and I suppose I could still do this as it is within walking distance. I want to ask if there is a waiting list or if all referrals have to come via SW because it is a LA home. Social Worker still obdurate that 'Now is not the time' for a care home and that I will be able to carry on once I have had this respite break. It is not how I feel. I cannot seem to get my act together, or make any decisions, or cope with jammed hand brake, clock and doorbell which won't work though I have replaced batteries, what to wear, what to eat ............
     
  3. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    1 problem solved :). Man from garage appeared and unlocked handbrake within 2 minutes of my call to garage. Apparently he was at the shop across the road getting the morning filled rolls when he got the call. No charge, happy to help.

    How I wish that the Social Work services were as kind, caring and efficient as our local garage.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,128
    Kent
    I really take exception to this attitude @Wifenotcarer. SW is not living your life 24/7 and has little or no idea. Perhaps you could invite them to take over for a day or two and then see if they feel the same.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    OH has just come back from a respite break. How you feel is exactly how I felt before he went. It took me 3 days to unwind and then I slept for England. I do feel better now, though, and I hope you will feel better for the break. Unfortunately, if you are LA funded they make you jump through the hoops.
     
  6. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    Well, I did pop into the care home in the village. I took them 3 unwanted Christmas gifts for their upcoming raffle, and assured them it was not a bribe. ;) I got a very warm welcome as everyone seemed to recognise me from when my Uncle was there. They were all anxious to tell me some funny stories about him. I explained that I had come to enquire about 'booking' a place for my OH, but as I feared the allocation of vacancies (none currently) is managed entirely by the SWD. The staff in the home have no say in the matter at all. They did think that it would be ideal for OH (and for me) as it would be familiar to him and I and the rest of the family could pop in easily. Their advice was to keep up the pressure on SW as it is unfortunately true that whoever makes the most noise gets the most attention.

    Finance would not be a problem as they charge standard LA rates. We have 'Rainy Day' savings and the rainy day has arrived. Initially this would mean that OH was self funding until the savings are exhausted and then LA would be prepared to pay the difference between OH's small income (private pension + AA + state pension + free personal care) and full cost.

    It sounds too good to be true, which usually means it IS too good to be true.
     
  7. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    I have worked myself to exhaustion today. 2 loads of washing done, out on the line and now dry and some put away. I have planted peas, and went up the wood at the back to fetch pea sticks and got some firewood too, chopped it up and in the log store. Swept and washed the patio and had a go at washing the car, which now looks worse than it did before I started. Then I went to do the weekly shop and popped in to Respite care home to see OH.

    Oh dear! what a state he is in. One of the carers told me he had been wheeling his empty suitcase all around the home all day. He thought I had come to take him to the airport but declared that I was too late, he would have missed the flight. I asked where he was going and he got angry saying that I knew fine where he was going, but he had no idea, nobody ever tells him anything. He has a single on suite room but insisted he was sharing with a guy who was in the scouts with him, He said this guy was too young (around 30yo) to be a resident so he must be staff. He also told me that they all had to work hard or they got no food and none of them got paid. Strangely, he did not ask me to take him home and his parting shot was to advise me to take the ferry home as 'they' would not let me take a car full of shopping on the plane.

    I had hoped to see and maybe get a cuddle from my OH, but he was not there. Only this strange, talkative man, who looked like him, only much older and talking nonsense.
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,128
    Kent
    It`s so sad. It`s probably not helped by disorientation and confusion.
    When my mother first went into residential care she thought she was in Spain because of her suitcase. I wish suitcases were put into store even for respite residents.

    It sounds as if you really have worked yourself to a standstill @Wifenotcarer. I understand your need to get things done while you can but I do hope you will make time for a rest too.
     
  9. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    I cannot rest, if I sit down or come on here I think too much, too much introspection. I do not think this respite is helping me (or OH) at all. Half way through now and I feel much worse rather than better. I probably should not have gone to see him yesterday. I was missing him, needed a cuddle and to see him smile. Instead I saw this total stranger who knew I was familiar but not who I was really, who resisted any attempt to hold his hand or take his arm to walk. I have to accept that my kind, caring, funny, supportive partner of more than half a century has gone for good. Instead there is just an empty shell, a badly programmed living doll or robot. I suppose I am grieving for the man he was, whilst feeling so sorry for him, struggling to make sense of a world/life that he finds alien to him.

    He has FTD + Alz, but it is only recently that he has lost the ability to name things, ie he cannot remember the word for door and has to resort to saying 'the thing we came through'. If I cannot guess the appropriate word quickly he gets frustrated and angry, tells me it does not matter, nobody cares anyway what he thinks.

    Social Worker is coming to see me on Tuesday morning. She thinks she is coming to offer more 'support for me' but she has nothing in her bag of tricks that will help in any way. I intend to tell her that what I want is that OH is considered for the next vacancy at the local care home. I will tell her that I can no longer cope with caring full time. In fact I am not really coping with everyday life on my own. The only thing keeping me here and still functioning (to a degree) is that I WILL NOT land this burden on my daughters shoulders. I must get OH's future care needs sorted/secured for my peace of mind.
     
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,247
    Female
    Dundee
    I’m so sorry to read of your situation @Wifenotcarer. I’m glad the social worker is coming on Tuesday and hope the outcome of the visit is as you want/ need.
     
  11. Lancashirelady

    Lancashirelady Registered User

    Oct 7, 2014
    110
    It seems obvious that the time has come for you to give up the struggle and let OH go to residential care. The obstacle may be SS who, from my experience, will try every trick in the book to keep the burden on you to avoid any financial responsibility. If you have the financial resources to pay for care they will be only too helpful to get you off their books but otherwise they will give you a seriously hard time. Don’t give in. You have your own health to think of and OH may actually be better off where his needs can be monitored.
     
  12. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    Social worker due in half an hour. I am a bag of nerves, trying to find the strength to hold firm and get the best possible outcome for OH. Elder daughter is coming to support me and I know she is 100% behind me. Wish me luck.......
     
  13. Starbright

    Starbright Registered User

    Apr 8, 2018
    402
    Female
    Good luck @Wifenotcarer.....Be direct and hold firm ...((( Hugs))) A x
     
  14. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    112
    I hope the visit with the SW went well and they are being supportive. Things have got too hard for you to cope at home, and you shouldn't have to.
     
  15. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    SW had done her home work. She had spoken to the respite care home and OH's GP to get their opinion as to where OH is at now. She firstly ran through all the usual suggestions - an extra day at day care, a raised seat for the toilet, more use of respite care, carers coming in to wash and dress OH and put him to bed, etc. She stressed that having the carers is usually the next step before considering a care home. I explained again that carers at a fixed time would not help as his sleeping times are so variable, also that they could wash and dress him at 9.00 am and he could be wet and/or dirty by 9.30 and I would have to do it all again anyway. She questioned in great detail how I manage to get him in and out of bed, etc. and said that I should not be doing that singlehanded, but again, if a carer came to assist for, say a 9.oopm bedtime, he would be up and down at least 3 times during the night and I would have to cope alone then.

    She thinks we have a case for full time residential care, mainly based on OH needing attention several times during the night as reported by the carers at respite and will compile a report which has to go to a panel who will decide if a care home is necessary. Still urging me to accept carers coming in during the day meantime, to relieve me of some of the toiletting, and heavy lifting. The thought of these strangers coming at fixed times fills me with dread. They will soon see how badly I am coping, which is I suppose a good thing, but very hard to accept that I am failing to keep up standards re hygiene, etc. and am often grumpy with OH.

    Daughter thinks that I should give it a try, if only to prove that OH needs more help. Any advice from those here who have been at this stage?
     
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,247
    Female
    Dundee
    I'm glad that the SW has taken your situation seriously and that things seem to be moving. I would certainly accept carers at home in the meantime. Even though you will still be doing a lot of the caring yourself it would share the burden of work a little. I had carers in and out of my home for around 8 years. First for my mother then for both my husband and mother then eventually for my husband alone. They are not there to judge you and I very much doubt if they will. It's not easy having other people in your home but I agree with your daughter that your should give it a try.

    Wishing you strength.
     
  17. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    223
    Central Scotland
    Thank you Izzy, I am in no state of mind to make sensible decisions ATM, so will rely on others that I trust. So far that is everyone saying I should give it a try, I will consult other daughter and my sister this evening. I have to phone SW tomorrow morning If I want to go ahead with carers.
     
  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    hi @Wifenotcarer
    as Izzy says, do accept home care visits and anything else that is offered - it may well be useful in bolstering your position that really it's time for residential care as the carers may be able to confirm that the visits are not providing the level of care actually needed - if it fails completely, your case is strengthened
     
  19. AliceA

    AliceA Registered User

    May 27, 2016
    2,247
    Good luck, it seems to be the only way to get action. My only experience was hospital at home, four even five a day, I should have had a key safe as I was wary of sleeping in case they turned up! There was no time to plan. Trouble is we often put on a brave face. Alice x
     
  20. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    Yes, that is exactly what you have to do.
    SWs have tick-box exercises to prove that someone needs residential care and one of these boxes is that you have to show that carers coming in for the maximum amount of time that the LA will fund (usually 3 or 4 times a day) is not enough.
    Im sure that the SW knows that he needs residential care, but she has to persuade the people who hold the purse strings.
     

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