Family at breaking point

Discussion in 'I care for a person with dementia' started by sixy74, Jul 8, 2018.

  1. sixy74

    sixy74 Registered User

    Jul 4, 2018
    101
    if you have read my previous posts you will know that we are currently waiting for SS to visit on Tuesday to discuss our options regarding respite care etc for Dad, however as I type Tuesday seems like a long way off.
    We are now in a situation where Dad is unable to stand on his own, sit on his own , get in and out of bed on his own basically he requires help to do anything. This has all happened in such a small space of time, only a month ago he was sleeping upstairs , whilst a struggle he still managed it with our help. This morning Dad woke at 6am and had wet himself , Mum and myself couldn’t even manage to get him onto the end of the bed to change him, as although he is 82 he is still a dead weight, this is very frustrating for all of us including Dad who became aggressive and tried to throw his walking frame towards mum and then threatened to shoot himself with a gun, god knows where he will get that from. Anyway we managed to get him into the bed although not where he should be as we just couldn’t pull him up to the top, poor mums back is in agony with the constant pushing and pulling.
    We will try our best to get him up and out of bed when he wakes up but it’s now becoming an impossible task, we have a bed.riser fitted and handles etc but they make no difference at all, the strength is there but for some reason the brain seems to shut down during the night and Dad just can’t move. I know there’s is nothing you guys can do so I apologise as there must be people in a worse situation than we are, I just need someone to rant to as I feel useless and can’t bear to see Dad like this and to watch Mum having to struggle like this at her age is horrible . I really do think a care home is the only option now unless SS can provide care through out the night but I don’t think that will be an option.
    Have a lovely Sunday guys
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,023
    N Ireland
    I don’t have any advice to give as I have yet to face this situation. I just wanted to say that I’ll be keeping my fingers crossed that you will get a good outcome on Tuesday.
     
  3. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    201
    Female
    Ilkley
    Hi there, when I read your post it reminds me how frustrated I have been caring for my mum with Alzheimer's, after my mother in law with a brain tumour and father in law with heart failure. In laws are now away from suffering but after 18 months in a care home my mum is still with us. The main thing I have learned is unless you "shout out" for help and repeatedly do so nothing happens regards support. I would be inclined to speak to your dad's GP first thing Monday morning and explain the crisis. What on earth would be happening if you weren't there for your mum. I initially went via Social Services for my mum and it was a total waste of time waiting for appointments and expecting something to happen was a pipe dream. The GP could open the door for emergency respite giving you the freedom to research and visit nursing homes. I found once I was consumed 24 hours a day caring for mum I couldn't sort anything out. When I did manage it the homes I thought would be OK for mum had waiting lists. Why wouldn't they have and why did I think it would be easy? Probably because I hadn't cared for someone with Alzheimer's before and I naively believed I would never move mum into a care and I would be able to manage with support at home. I hope today isn't too bad and you get support as soon as possible. Sending a big hug xxxxx
     
  4. SoAlone

    SoAlone Registered User

    May 19, 2016
    137
    Female
    Devon
    I agree with Yorkshire lass. Shout long and loud until someone does something. I had to call emergency services regarding my OH behaviour 3 times in one weekend before anything was done. I am afraid in the end I had to put my hands up and say 'I can't do this anymore' because social services told me I couldn't have respite care because OH wouldn't agree to go.
    Do take your time looking for a suitable placement and stick to your guns. I have allowed myself to be convinced that a Nursing Home can manage OH, but after 3 days it already appears they can't. I know everyone says give it time and I am going to try, but I wish I had insisted that he went to 1st option I was given, which was a specialist Dementia Care Unit for people with complex dementia behaviour. He was accepted by the Unit but when they didn't have a place immediately, the home he is in now suddenly became far more suitable as his behaviour had improved. Really with dementia, not likely. Unfortunately I fell for it.
     
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,278
    Yorkshire
    I do agree, shout loud and start now, don't wait
    there should be an emergency number for Social Services on your Council's website - call today and let them know exactly what the situation is ie not just your dad's condition but that your mum is putting her own health and welfare at risk trying to provide the level of care now required - say you both cannot properly move your dad and are considering calling 999/111 to get paramedics to help (who could also make a referral)
    in the worst case, they will say wait until tuesday, but you will have registered the situation with them (and can call again at any time ) in some cases, emergency respite has been organised the same day
     
  6. father ted

    father ted Registered User

    Aug 16, 2010
    694
    London
    Sixy74, nothing to add to what other posters have said.
    Your situation is untenable and can not carry on. The local authority have a duty of care but help will not be forthcoming unless those providing the care refuse to do it anymore. You are caught in a cleft stick because you know that an emergency placement may be confusing and distressing for the person concerned and their families so we are all tempted to carry on for fear that things will get much worse but as you so plainly explain they are at breaking point now.
    Be strong and resolved. I wish you a satisfactory outcome.
     
  7. myss

    myss Registered User

    Jan 14, 2018
    405
    I also agree with Yorkshire lass' post but, as mentioned in father ted's post, please also demand your right to assistance from your LA/Social Services as, although most people's experience with them may not have been good, there are also some who have found it to be better than perceived.

    All the best to you xx
     
  8. farmgirl

    farmgirl Registered User

    Jun 2, 2014
    67
    shrewsbury
    We were in the same place last summer dad seemed to go off his legs overnight had to rush and bring a bed downstairs we have now some hoists but like u it's difficult for mum as she's ill but we have struggled to find help and have someone for 30 mins 5 mornings a week...good luck I hope you get things sorted.
     
  9. sixy74

    sixy74 Registered User

    Jul 4, 2018
    101
    Thank you to everyone who replied to my thread and I apologise for the late reply , almost a week to the day that I asked for your advice.
    Well what a week it’s been, probably the most distressing of my 40 odd years on this earth. SS were unable to place Dad into respite as no care home would accept him until he had been seen by his GP as they all considered his sudden lack of mobility could be due to another under lying health problem. Anyway the GP visited Dad at home and suggested he was admitted to hospital for investigations, the ambulance was called at 3pm on Mon and arrived at 1:30am Tue morning, after a further 7hr wait on a trolley in A & E he was finally admitted to hospital. The Dr there immediately stopped some of Dads medications which were contributing to his lack of mobility and immediately started treatment for his Parkinson’s disease that a previous specialist ruled out, as he suggested the treatment would not help, strange as at least 3 Drs have now suggested this was the wrong decision. It’s been a difficult week as Dad needs one to one Care and for reasons out of their control the local hospital can not offer this 24/7 meaning dad has already suffered a fall. Anyway the plan is to try and regain some mobility and to move him out to a rehabilitation centre and then home once a care package has been put into place. Unfortunately Dad is still aggressive at times due to the frustration of needing to pee and not being able to stand to do so, as he still has it in his head that he needs to do this even though we have bottles etc , it’s impossible to explain to him that he can lie down to use the bottle or simply the pad they have fitted to him, but the Drs and nurses just don’t understand the condition like those of us living with a sufferer 24/7 do. By the time dad is able to explain himself and then receive help he has usually wet himself , which causes further distress, I honestly just cannot see a way around this problem. Anyway at least he is finally receiving the correct treatment and it’s just a case of taking each day at a time . This week has been the first time in probably a year that Mum and myself have been able to have a good nights sleep, although you can’t help but worry about him and the care he is receiving when you have been sole carer for such a long time. Anyway let’s see what this week brings , I have a feeling it’s going to be a rough road ahead and that the hospital will do all that they can to discharge dad as soon as possible . I will keep you all informed
     
  10. KathrynAnne

    KathrynAnne Registered User

    Jun 6, 2018
    272
    Female
    South Yorkshire
    In my experience the rehab centres have been excellent. Hopefully once your Dad is moved there he will get the care and understanding he needs to put him in a position to come back home xx
     
  11. garfield3

    garfield3 Registered User

    Jun 30, 2018
    183
    Sounds a hellish situation ,but a least , hopefully things will move in the right direction for you all.

    My dad looked after my mum at home for about 10 yrs and at the end it was really hard for him. It was so stressful he lost weight, had a stomach ulcer and lost all his hair due to stress. Mum got violent, agressive and was quite often incontinent at both ends. I wasn't there as much as I wanted to be ,as I live abroad. Odd thing to say, but she broke her femur and it was the best thing- she has now been in a nursing home for 3 yrs. Not self -funding .dad was looking at a care package for home, but it would not have worked, too much stress.

    The wheels of SS do turn slowly sometimes which can be a pain. As said before he is in the best place and it'll let you both recover a bit. Good luck with it all. Hang in there.
     
  12. sixy74

    sixy74 Registered User

    Jul 4, 2018
    101
    Thank you all for your words of encouragement, at first I thought Hospital was such a bad idea but if we wouldn’t have gone with it then Dad would still be in pain unknown to us . However watching a pair of fantastic paramedics waking him up at 1:30 am in the morning and taking him away was heartbreaking. Can I just say I have nothing but praise for the paramedics they do a fantastic job and treated my dad with the dignity he deserves
     
  13. myss

    myss Registered User

    Jan 14, 2018
    405
    Wow. I was reading your post open mouthed at this point, let alone the rest of it. You and your mum have had such a week but I'm pleased to read that you both had one decent night's worth of rest.
    I agree that another poster that the hospital seems like the best place for your dad at the moment and hopefully a change in his medication will have a beneficial affect on him. Fingers crossed.
     
  14. sixy74

    sixy74 Registered User

    Jul 4, 2018
    101
    Hi All
    Well the saga continues , whilst visiting Dad we were told that he is no longer suitable for rehabilitation because he has no understanding of the situation therefore they are unable to rehabilitate him. Their idea is now to sort his water works out so that he doesn’t need to urinate during the night and then send him back home. They are insisting on a care package of 4 carers throughout the day with a possibility of a night carer popping in during the night. This is not the solution as how can you tell a dementia sufferer to hold their bladder or bowel until a carer pops in at 2 or 4am. The Dr was so pleased with herself that she had managed to get Dad to stand up for a minute insisting that that is enough mobility to be sent home with a care package. So far we have been given different solutions by every single Dr that we have spoken to, with the next Dr ruling out what the previous Dr had suggested. Tomorrow we meet with a Social Worker and a team from the hospital to discuss the next move. Both myself and my Brother do not want our 72 year old Mum to end up back where she was a week ago, and that is exactly what they are proposing. We all agree that a care home is now in Dad’s and Mums best interests , Dad always said if anything should happen to me look after your Mum and that’s exactley what we are trying to do. Mum has many health worries of her own and they do not seem slightly interested in this.
    Any suggestions on how to handle this meeting tomorrow would be really appreciated. If Mum says she s unwilling to continue with the caring role then what happens next. We really feel like they just want dad out of the way to free up a bed. They even had the cheek to say it’s basically our fault for taking on the role. For a few years without asking for help. All this unease when we should be concentrating on my poor dad who hasn’t a clue where his is
     
  15. Cazzita

    Cazzita Registered User

    May 12, 2018
    532
    Hi sixy74,
    Just awful reading through your posts and the replies. Hard to believe that this all lies ahead for my mum and dreading it. The care offered just isn't good enough - how can that Dr think that your dad standing for a minute means his mobility is okay? Beggars belief.
    Good luck with it all and wishing you and your mum and brother strength to get through this. xx
     
  16. sixy74

    sixy74 Registered User

    Jul 4, 2018
    101
    Hi Cazzita
    Thank you very much for your kind words. Hopefully you may never get to this point. The one bit of advice I can now offer to anyone dealing with or caring for a person with dementia is to ask for help as soon as a diagnosis is confirmed even if you don’t think you need it at the time . If you struggle on without help for months or years as we have then it is much harder to get it at a later stage. Get yourself and the person you care for on the register with SS as soon as possible
     
  17. Blondee

    Blondee Registered User

    May 12, 2018
    105
    Hello sixy74
    I’ve just read through your posts. You’ve had the most horrendous time and my heart breaks for you and your family. I don’t have any advice to offer you except keep on at social services but I would echo what you say about getting them involved sooner rather than later. I found to my cost that you can go from needing no help to needing full time care in a heartbeat.
    Best wishes to you and please keep posting
     
  18. myss

    myss Registered User

    Jan 14, 2018
    405
    Hi @sixy74
    Anyone with an ounce of love for their relative in their soul would try to see if they could look after them first. To me, that's just as natural as when your child has a cold and you try to look after them at home, your first thought isn't to run to a hospital or call 999 when they start to sneeze. Of course where illness gets worse, then call for help but it's wrong for the doctors to make you feel bad for attempting to look after your dad yourself first.

    All the best for you for your meeting tomorrow.
     
  19. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    201
    Female
    Ilkley
    I know it's not what any of us want to do but my advice is to stand your ground and refuse for your dad to be sent home. It is unacceptable to expect your mum to be his carer and as you quite rightly say "they" are happy for you to continue with the support for both of them. I would explain you are confused by the various scenarios offered by the doctors. What then? Whilst your dad is being cared for in hospital take the opportunity to investigate residential care if he is self funding (ie he has more than £23,250) you can sort it and if not you will be in the hands of Social Services and they will have to find somewhere that meets his needs. It's disgraceful that dementia is treated as a "get on with it yourself" terminal illness with little or no support from the NHS. I hope things are better tomorrow. Sending a hug xxx
     
  20. Herewego

    Herewego Registered User

    Mar 9, 2017
    92
    #20 Herewego, Jul 16, 2018
    Last edited: Jul 16, 2018
    Hi sixty74, I quite agree with YorkshireLass - when my MIL went through this, she had wandered (was still living on her own) and been picked up by the police. At this point both my OH & I knew she needed more help/diagnosis but a few weeks earlier when she had locked herself in her house and my husband had to break the glass in a door to get in (we had a key but she had double locked her door) we called her GP - MIL closed the door on the GP and told her she was fine - the GP's response was 'well there is always 2 sides to things' and dismissed what we said. Anyway, what I was getting around to saying - she wandered a week or so later, police picked her up and when they rang and asked me to come and collect her, I refused. In my mind as long as we were willing to pick up her care, no one was going to sort out what was wrong. The outcome was that she was admitted to hospital (Mental Health Unit) and was there for months before they finally transferred her to a care home......that is another story, but sometimes you do need to appear to be 'cruel to be kind' -

    You might need to say your mom is going to come and live with you for a period to recover and that they are welcome to bring your father home but there will not be anyone there to look after him so they will have to provide 24/7 cover until your mother is well enough to look after him. In your opinion that she may never be well enough to do so. Does she have a different GP? Is it possible to get him/her onside so s/he supports the need for a complete break?

    My OH now has dementia too, tomorrow is his first day at a day centre - starting with 2 days a week but after today and the weekend, i intend to say that as there is capacity on the other days I will take it! We did eventually have his mom here so have bedrooms on the ground floor that could be used to look after OH when he gets to the same place your father is, but I am under no illusion that while that would be the ideal solution, I have no intention of ruining my health trying to look after my OH on my own - if a care home is needed then I intend to make sure he gets it.

    You need to help your mom help herself by insisting SS / NHS now pick up from your mom -

    Good luck with your meeting - we are all behind you........
     

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