1. sazdal

    sazdal New member

    Nov 26, 2017
    3
    Hi, my mum had an episode last weekend which landed her in hospital. She has cognitive impairment, but has never been 'officially' diagnosed with dementia/Alzheimer's. She lost her speech for a short period of time, and since going to hospital has been very confused, including having hallucinations. Up until this time, my mum (while having 'gaps' in her memory and a bit of confusion) was able to manage in her own home, doing her own washing, ironing and some cleaning. We prepared the main meals and ate with her several times a week.

    She is now deemed 'medically fit for discharge', so Social Services abruptly told us that we would need to come to a decision as a family within 1-2 days about getting her home. OT recommends 24/7 care, including help with toileting, personal care, supervision with transfers, and hand-held walking. We haven't even seen her consultant yet. So we told the SW that we wouldn't be making any decision until we had more information and some kind of prognosis (as far as its possible to give one).

    Anyone else in a similar situation? Is 24/7 care at home viable - my husband and I both work full-time and my job involves a lot of travel. Any help/comments welcome.
     
  2. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,662
    I look after dad 24/7 and I am struggling. If you were to take this on then unless you have very helpful and obliging other family members (not likely) then one of you will have to give up work unless you can pay for care while you are not at home. I imagine that would be very expensive for any overnight care or even a full day.

    Your mum sounds to be further advanced than my dad and I can only leave him for short periods during the day time, perhaps an hour at the most and that is probably chancing it. Night times I can't leave him. Dad came out of hospital 8 months ago and has improved a lot, I really don't know how we coped that first month or 2

    I think it is important to accept from now that your mum is never likely to get back to how she was before although she may improve some.

    Before dad went in hospital he got by with me visiting twice a day for meals and shopping and washing and so on. Now he gets lost in his kitchen and cannot operate any of his appliances.

    I agree a prognosis would help but even that is unreliable. I was told 18 months ago that dad was terminal (cancer) and to expect a slow decline (best guess was 6 to 9 months) but he's still here and does not look to be going anywhere else fast.

    Don't agree to anything yet and really think hard about what you can or cannot manage.

    I think in hindsight if my dad had gone straight into a care home from hospital it would have been easier for everyone. Now he is firmly settled in his own home with me or my brother on hand 24/7 it will be difficult because he actually thinks he is fine and looks after himself. Unbelievable but true.
     
  3. sazdal

    sazdal New member

    Nov 26, 2017
    3
     
  4. sazdal

    sazdal New member

    Nov 26, 2017
    3
    Thank you so much for your reply. I'm new to all this, so any advice is appreciated.
     
  5. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    611
    Female
    My mum (diagnosed with Alzheimer's), has lived with us for over two years. OH and I made the commitment to keep her at home till the end. That was before we discovered this forum; by reading other people's stories, we have concluded that we will keep mum with us for as long as possible, realising that at some point others (carers / care home) may be able to care for her better than we can if / when she declines.

    That said, mum is easy to look after at the moment, she is good natured and good company BUT needs constant supervision. She can just about manage personal care and is continent, but unable to make a cup of tea, more, doesn't recognise that she is thirsty / hungry. She knows feeling hot but the mental link to take off her cardigan is gone and the other way round, if she's chilly, she wouldn't think to put on warmer clothing and there's the but, we have the responsibility of thinking for her, taking meds, providing meals / drinks, daily exercise (she can walk but needs an arm to hold on to, we live amongst hills and cliffs and she would not be able to use a walker).

    So reading this you will realise that she cannot be left on her own, which means our freedom is curtailed and this is the aspect that OH and I find difficult to deal with. It seems as if from being a couple, when mum moved in we became a threesome; generally, if we go out mum comes to!

    Going back to your question, I would say that you could manage your mum at home with an awful lot of organising and help; however, realistically, the chances are your mum will decline, mentally and physically, perhaps the best option would be to consider a care home now, from your point of view she would be safe and well looked after and you would be able to maintain your lovely relationship with her by visiting often.
     
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,662
    I feel like I was sucked into it. When mum died 8 years ago I made sure that I visited dad a lot more although I had always been a very frequent visitor it seemed more important now dad was alone. We took to lunching a couple of times a week and I would stay over once or twice a week but I still had my freedom. I could go away. I could have nights out with my husband. Then dad became unable to drive in 2017 so I would take him shopping and also took over his washing etc Then dad stopped eating so I was there for every mealtime to try and get something down him, then came all the appointments to get him diagnosed and to find out why he could not eat.

    Then came the cancer diagnosis and the special diet 18 months ago, I tried to hang on to work by changing to evenings only but it became too fraught and I was running myself into the ground so that went too. I managed a Saturday job for a while (the oldest Saturday girl in town) but that folded which was a shame as I think I could of held on to that but it was not to be.

    Then there was the 3 week hospital stay back in March for pneumonia followed by a heart attack and then a stroke, Oh yes and 3 falls while in there. Then dad came home (he really shouldn't of) and it was 24/7 That was 10 months ago and I don't really have a life anymore. When I get a couple of days off I just go home and hide in the house although my husband and I have had a number of short breaks this year and it is nice to get away as soon as we are home I just slip back into my role as carer and I really am fed up with it but I am kind of stuck because dad is still dying (apparently) and I have to make things nice for him and I have.

    He is safer with me than he was in hospital, he hasn't fallen and he has a suitable diet for his condition unlike when he was in hospital (I wonder how he survived that) and he is also very happy with me looking after him because he thinks it is temporary and he is going to get better. At other times he is completely unaware that I am even there and is surprised when I emerge from the kitchen.

    As you can see I was sucked in and it has affected my income (carers allowance is rubbish) my family life has suffered, my house is a mess but dad is happy. I have now decided that if or when dad has another downturn and becomes less aware then I will try to get him into a care home. I can't believe how resilient some elderly people can be in spite of all the ailments and setbacks they can suffer I am truly quite amazed.

    I am also lucky that dad still has a wicked sense of humour and is good company (when he is awake) and he is still continent although he needs directions to find the bathroom.

    Just be aware that this can go on and on. 18 months ago I had an end in sight or so I thought, now it is stretching out into 2020 and I can't really believe it. Sorry to be so dismal but this is how it can be. I think you need to think hard.
     
  7. Flavelle

    Flavelle Registered User

    Jun 20, 2017
    36
    Take your time Sazdal, good for you for making it clear you would make a decision. Our health service is so overstretched that I reckon if family are seen to care they are jumped on and : ‘medically fit for discharge’ rolls of the tongue regardless of the accuracy of the statement. I was told my mother had no more medical needs and was fit for discharge when she patently wasn’t.It was because they knew I looked after both parents and so it would be easier to free up a hospital bed by discharging her, though she was the most debilitated on the ward. It forced me to pay for ‘My care, my home’advice when we could have well done without the additional cost & was inaccurate as M was entirely messed up and they later diagnosed Parkinsons to add to her long list of med stuff and kept her in hospital a further month. I do look after mine at home though, for the record. I think most people think we are mad, I don’t regret it, I may live...haha or die regretting it but I have a healthy sense of where to draw the line with caving into to: Oldie demands (remember PWDs don’t know the situation) and med people’s demands (rarely know the situation & would rather psychologically analyse the carer than give a PED an X-ray in my experience!)
    We took time to make our decision and are still sticking with it for now! All the best
     

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