Not sure what to do for the best

Discussion in 'Welcome and how to use Dementia Talking Point' started by Sadandlost, Nov 10, 2019.

  1. Sadandlost

    Sadandlost New member

    Nov 9, 2019
    hi all, I’ve come searching for support and understanding. My mum was diagnosed last week yet we have know for a few years now that she has had dementia. My dad died suddenly in May this year and since then my brothers and I have realised just how bad mum is and how much my poor dad had had to deal with. From reading some posts it feels like the death of one parent often exposes the extent of the dementia of the surviving parent.

    My mum has diabetes for 20 years and collapsed on her 70th birthday. She began dialysis not long after and then suffered a stroke almost a year later. Since then she has rapidly gone downhill both physically and mentally. Her mobility is now st the stage where she can only transfer from her bed to the wheelchair to the toilet.

    5 weeks ago the doctors tried to create a new fistula as her old one is thought to not have much life left in it but thrrr were complications and they had to go back in 2 days later. There are now no more options on the fistula front and we are relying on the old one for dialysis. Her mobility declined even more after this last trip to hospital. There have been many many hospital stays over the past few years.

    My mum and I have always clashed, she was always headstrong, self centred and spoilt by my dad! She is used to getting her own way that’s for sure. Anyway I promised my dad I would take care of her and would try not to fall out with her and up until now o have done my best to keep that promise. But it’s getting harder.

    First my brother organised a carer to come in to cook her tea. She told them not to come back. After she got out of hospital, with the docs help she agreed to round the clock care so this time I sorted it out and we have 4 women doing round the clock care for the last 3 weeks. First night she was home she didn’t like the hospital bed and tried the next day to take herself back upstairs resulting in a fall. I had to call an ambulance to help get her up off the floor. They helped get her back downstairs and disabled the chair lift. Wish I’d thought of that! Yesterday we organised for her to go out for lunch with her friend but they arrived back 20 minutes before the carer arrived and when I came to check they’d got back ok I found my mum naked on the floor as she had fallen trying to get undressed. Today I went to collect her from dialysis but she had taken a taxi home forgetting I was coming and by the time I got to her house she had fallen trying to get up from the wheelchair and had had an accident too. Now she says she doesn’t like the afternoon carer and is going to send her home tomorrow. I tried to explain that she can’t be on her own and reminded her of her fall today and yesterday but she doesn’t care just kept repeating she’s not having that idiot back in her house because she can’t even make a hot water bottle.

    I am totally lost. How can I help her if she fights me at every turn. I’ve said that maybe it’s time we thought about a care home but she doesn’t like that idea at all! I don’t blame her really but it can’t go on like this. I’m so worried and stressed all the time. I never know what each day will bring. I can feel my frustration being taken out on my children. I’m really struggling with dealing with my own life because all my energy is being spent dealing with mum.

    As it stands tomorrow she’s going to be on her own for 6 hours but I’m also worried that even when there’s a carer in, if she falls it takes 2 people to get her up. Is she safe at home? Should she be in a care home? I honestly don’t know what to do to help her stay safe. Any advice would be welcome.
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I think my lovely you already have the answers to your questions. yes your Mum should be in a care home. Promising to look after your Mum doesn’t mean that you have to keep her in her own home. You promised to ensure she was cared for & her needs met - that’s what promising to look after someone means.

    If 24/7 care in her home isn’t working / your Mum won’t accept it I’m afraid you need to calmly sit down with a supportive family member & explain that if carers can’t come in & care then the other option is a nursing home.

    I had to do this with Mum several times, & still am reinforcing this message. It’s part of dementia.

    good luck but keep all options on the table
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Welcome to Dementia Talking Point @Sadandlost

    You know you can't carry on like this and your mum has no understanding of her own plight. I know how difficult it is to make the decision that it is time for a carehome but I found myself in your position last year when my dad started falling frequently. He ended up in hospital and I had him moved from there to a carehome where he was well looked after for the rest of his life.

    I think you know the time for a carehome has arrived.

    I found it easier to send him from the hospital to the home for "recuperation". Only I knew he would never go home again. Once settled he was content there for the rest of his life. I hadn't realised how much stress I was under until it was lifted once I knew my dad was safe and well looked after.

    Had dad not gone to hospital my plan was to persuade him to go to a "nice hotel" where people would look after him. I got this idea from other members here who have used that tactic successfully.

    There are some very good carehomes around that specialise in dementia care and you need to be totally honest about mum's behaviour. Some homes deal with feisty individuals better than others!

    If you decide to go down the carehome route people on here have plenty of experience in choosing the right one. Good luck with everything.
  4. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    The answer to your question is, yes she should be in a care home. If you wait for a person with dementia to agree with you or see your point of view then you will wait forever. I'm afraid it's time to take charge of the situation.
    My mother-in-law was like this and she had carers in three times a day for three years. Eventually she went into hospital last summer and my husband and I took the decision that she was no longer safe in her own home. She was a high falls risk. We told her she was going to recuperate in a convalescent home until her legs were better. The reality was she was never going back home. My mother-in-law was self funding, so we didn't involve social services
  5. Palerider

    Palerider Registered User

    Aug 9, 2015
    North West
    I don't think you can continue @Sadandlost. Your not just battling with dementia here but also ESRF which is mightly complex in itself without the dementia bit. God only knows how you have coped with this all happening and trying to coordinate dialysis as well as a new fistula.

    Sounds like your mum fits the criteria for nursing home placement and not residential care. I don't think that many of us on this forum could cope with these issues in the way you have, but like us all, the dementia will worsen and maybe its time to apply for nursing home care??
  6. Lanny1Norma

    Lanny1Norma Registered User

    Nov 10, 2019
    My partner has been in a care home for six weeks and hates it but I know he is safe. It only has 20 residents and the staff are lovely, He does not know he isn't coming home we keep telling him that he is still unwell and has to stay until he is better. I feel guilty as I don't go every day despite the care home being ten minutes away, the reason I don't go every day is because he begs me to take him home and I have to slide out. Be prepared to have a fight on your hands.
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    it will get easier my lovely. ((((Hugs)))))
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Please don`t feel guilty. Not going every day will give your partner time to settle.

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