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Does everyone know what to expect?

Discussion in 'I care for a person with dementia' started by Splashing About, Oct 20, 2019.

  1. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    Mum is 84. She is incontinent ...started with accidents 2 yrs ago. I recommend the vax carpet cleaner... ;) we have fought and fought for incontinence items to be provided on the NHS but had to fill in food charts, poo charts, wee charts and collect samples and a whole host of impossible stuff. Eventually managed it and a three month supply was delivered the day she went into hospital....

    If mum were happy I’d find this so much easier but the dementia has been notable for her unhappiness. That’s harder than poo everywhere tbh!
  2. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    Ah that’s good to read
  3. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    It is possible to feel positive about a care home. We looked at six locally having researched for positive feedback on dementia care. The one that I thought was the best bet had a good CQC rating (I also read the most recent report) and there were a lot of unsolicited testimonials from residents families on-line which were reassuring. So I made sure we visited that one first. Safe to say the other five visits were a bit of a waste of time but I suppose they confirmed that we had found the right one. That was a year ago and we have since discovered that three people we know, including one of the GPs at the surgery, have relatives in our chosen home and speak very highly of it. The people at the home have bent over backwards to introduce us to the home and have reassured us that as soon as we are ready they will welcome Mum to their community. It’s just that we’re not quite ready yet. The decision is so hard.

    I’m sure it is difficult when you are down in the dumps but keep looking. It is so hard to imagine your Mum in one of “these” places I know. It seems like the beginning of the end and an abdication of responsibility for your loved one. I started off with the same view of care homes as you have now but I have seen so many positive reports of success -often unexpected - with them on this site that I have hope that we can make it work.
  4. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    So an exhausted Dad and I have viewed 11 homes as recommended by discharge coordinator. My gut feeling is that she is too far advanced for any of them and none can provide the care she needs. We both felt depressed at the thought of her going to them because they don’t feel safe and all sound cagey about managing people with similar behaviour to hers (at times). Nonetheless we shortlisted.

    One home assessed her today and agreed she needs far too much support. The Chinese whisper on the ward tonight is that they will now choose her home (not us). So that was a wasted couple of afternoons when we could have been sat with her instead of wandering around care homes.

    I feel back in limbo and my thread subject of not knowing what to expect is true again. Tomorrow we will have to request a further meeting and repeat our request of Monday which was can we have a needs assessment and a shortlist of homes to look at. That resulted in go and look at x y z. I’m hoping for a better informed opinion

    My dad is in bits.
  5. Lawson58

    Lawson58 Registered User

    GP and I were discussing my current situation - struggling marital relationship because of OH's paranoia for three years before his diagnosis over five years ago. Prior to the diagnosis he had a cardiac arrest at home so has survived six years since that event. I was making the point that I am 75 years old and feel that I now know that I am running out of time to do a few things for myself and the GP said how tough my husband was to have survived everything he has been through, that he understood my frustration because he could last weeks or maybe he could go another six years.

    The thought of another six years was dreadful and of course, there is no way of knowing. I just couldn't stand it. Life's hardly worth bothering with now, and I shudder to think I could be doing this when I am eighty years old.
  6. Sirena

    Sirena Registered User

    Feb 27, 2018
    Yes, I did - the first one I visited. Obviously it was still a care home, which is never going to be the same as your own home, but it immediately felt welcoming, the staff were cheerful and the residents were content - and there was no smell of wee, very important! And I thought my mother would fit in well there. She's now been there nearly two years and she loves it. I think you have to adjust expectations, you aren't going to love it, but you may find somewhere she can be content. But of course looking at care homes is not something any of us ever want to do.

    In terms of what you can expect, no one can tell you that, except that she will deteriorate, although noone knows at what rate or in exactly what way. My mother is in a CH with 40 others and they are all different.
  7. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    They have decided to keep her in hospital a bit longer (until next week) to properly assess her needs. They have also instigated assessment for CHC (both unasked) so we await that. I’m not holding any fixed expectations as it’s a lot easier this way. Every day changes.

    I have a sister in a CH and have a great relationship with everyone there. The team are amazing it’s the right place for her. It is her home. It’s not perfect but nor is my household! So I’m not anti CH but I knew in my gut that mum’s needs were not going to be met in the care homes we visited. They didn’t feel safe and every single one told us they didn’t deal with wandering or aggression. But those were the ones we were told would meet her needs so I was trying to reconcile my gut with the professional opinion and keep an open mind.

    As her needs change I’m sure the home will as well.
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I must say that I would share your concerns @Splashing About
    I hope the greater scrutiny of her needs will mean that she gets a care home that will meet her needs better
  9. Lirene

    Lirene Registered User

    Sep 15, 2019
    I found red wine is for most times, but when the demons come and my terrible terrible heartache and pain is too much to endure I need whisky.
    Praying for everyone xx
  10. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    Thank you both. Finding this forum has been really really helpful. To be able to express everything helps me clear my head and see with more organisation and clarity. It’s useful to read other experiences and get perspectives to challenge my assumptions but also support me in feeling I’ve got some things right.

    The social worker agreed that her initial assessment was based on notes and hearsay. They’d not met mum when they told me their recommendations. It was a useful conversation to have and I politely aired how I felt about the hospital experience so far...mixed messages, assumptions and lack of respect for family experience and knowledge of her. They are caring but busy. I have also acknowledged they have the experience of this situation far more than me
  11. Chaplin

    Chaplin Registered User

    May 24, 2015
    Your post struck a chord with me, our lovely mum moved to a care home today having spent almost 5 weeks in hospital. She was initially admitted with delirium but she became increasingly distressed and between my elderly dad, plus my two siblings we pretty much spent most of the day with her as she was on such a busy overstretched hospital ward. Me and my sister still work full time too so it has been a struggle. We quickly realised we would have to consider homes as her needs could no longer be met at home. The home is very nice, staff too but the sense of guilt that after 8 years we have given in! At 85 with type 2 diabetes we never dreamed her dementia journey would be this long but if she didn’t have dementia she would be amazing. It is because it’s so unpredictable as everyone has said here, that we had to make the hard decision for her safety. She’s not happy and she doesn’t mind telling us, frequently, we just pray she will settle into a different routine as soon as possible. We did much of our own legwork as the hospital social worker would have put mum anywhere which is the cheapest possible as we’re not self funding, and miles from my dad who would like to visit mum daily. We managed to secure mum a place in a home the hospital discharge team had allegedly approached and were told no availability. Keep your wits about you, you don’t have to accept any home you are not satisfied with and sadly while your mum has a hospital bed, it does give you some leverage! My parents have been together for 65 years and it’s hard to see them separated in this way so I can empathise deeply with seeing the effect on your dad. Hope this terrible situation is resolved sooner rather than later for you all.
  12. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    Mum might be CHC funded (doubt it) but otherwise it will be self funded. The hospital have still inferred that they may place her out of our area if no suitable local beds. Interesting what you say about being able to secure a bed in a home the hospital has been turned down for. I’d also decided to ignore the ‘no beds’ hospital report and approach directly
  13. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    Today they’ve told us she may last 2 months

    She’s still a bit cross but quieter. Still refusing food and drink (but not completely). They have indicated something wrong with her bloods but I don’t know what. They said a subcutaneous drip is an option but after discussion agreed it’s just prolonging the inevitable. We are spending time with her and saying our goodbyes.
  14. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    #34 Rosserk, Oct 26, 2019
    Last edited: Oct 26, 2019
    I’m so sorry to read your story. I really hope you and your family especially your dad can come to terms with your impending loss. No one wants to see their loved one distressed, angry or unhappy. I hope your mum finds some peace soon and you can all move forward and smile again at your memories xx

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