Am I awful to think about care?

Discussion in 'Recently diagnosed and early stages of dementia' started by TillySM, Sep 17, 2018.

  1. TillySM

    TillySM New member

    Sep 13, 2018
    Hi all, i've been reading lots of posts on here, and an staggered at how wonderful so many of you are caring for your relatives in your own homes.
    So; mum had a 'mental episode' six months ago. She spent 3 weeks in general hospital and a further 7 in an older persons mental unit. They said it wasn't dementia and treated her for psychosis, and she is still on medication for this. When she was discharged we had about 4 weeks of her being okay but then the bad days, as i call them, started. She will be very vacant, aimless wandering, not knowing why she is doing things. The neighbours called an ambulance at the beginning of August and she was taken back to hospital. Since then its has been a constant string of infections causing delirium (she is very prone to UTIs) and a constant calls to GP, 111, 999 (accidental overdose) and taking her into hospital. Just over a week ago I went mad at the hospital when they wanted to discharge her, having done none of the tests they said they would, so they have now done some tests and diagnosed vascular dementia.
    Mum is 74 and lives alone in a relatively remote location near the sea.
    On days when she seems to be 'in the room' she is extremely depressed and often very anxious with short breathing and profuse sweating. She is having a lot of dizzy spells now too. 2 weeks ago she was found wandering around the park where she lives, barefoot and bleeding having been bitten by her dogs. Again it turned out she had a UTI, but she had only been discharged supposedly clear of infection exactly 1 week earlier.
    From reading many posts on here care homes really seem to be seen as a last resort, but I wonder if anyone has decided to go down this route a bit earlier??
    I feel callous thinking this but I live 250 miles away, my sister lives abroad and my brother has disabilites himself so can't care for her. She doesn't have anyone popping in to see her regularly hence the lonliness which breaks my heart.
    I just wonder if being somewhere where she can socialise if she wants to, join in activities if she wants to, and she should hopefully eat and drink better could actually do wonders for her even though she has only just been diagnosed?
    She has lost a lot of weight in the last 6 months and is often dehydrated which obviously isn't helping with the infections.
    I love my mum to pieces, but I know that I am not strong enough to look after her myself.
    I feel like I sound like an awful and selfish person, but I hope someone might be able to offer a little advice.
    Sorry for the massive post!
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @TillySM, welcome to the forum, which I hope you find to be a friendly and supportive place.

    I don't think there is an early or late time to consider full time care. I think the time is right when the required level of care can't be provided in the persons own home and safety becomes an issue. I don't think you are awful or selfish to be thinking about this, quite the reverse in fact.

    I wonder if you have had a needs assessment carried out. If not, this may be the place to start.

    To help you with these issues here are links to AS Factsheets about the matters
  3. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    Hello @TillySM welcome to TP, I hope reading previous posts has been a help to you.
    In fairness I don’t think there is any set time for a CH, when the PWD is not safe or the one to one family care is not enough then it becomes inevitable to consider a move to a more supportive environment
    Now you have found us please keep posting
  4. Lily1

    Lily1 Registered User

    Feb 6, 2018
    You have to do what’s best for your mum and for you. We had a similar pattern with mum, sudden deterioration which was labelled as maybe delirium or psychosis, a stint in hospital followed by a stint in residential care. Mum came home in May, then diagnosed as Alzheimers, along with a myriad of existing and worsening respiratory diseases and now has 4 care slots a day and we are awaiting 2 night slots to start as her sleep has gone. To be honest I’ve now re broached the idea of nursing care as there’s no joy, everything is routine around mum and I am beginning to almost resent her, my dad in his 80s seems to think we can carry on, I’m exhausted, working full time and then take over, when I get in, he goes out, we are clashing more and more as a result too, he’s continued his routine to a large extent while I have to almost book time out. Problem is without free time and without any hope that things will improve the brick wall is looming. I feel so guilty and as if I’m letting mum down but on the other hand I know things can’t continue like this. I think you’re being very sensible and proactive, you definitely have your mums needs at the forefront, remember she’s lucky to have you looking out for her!
  5. Norfolk Cherry

    Norfolk Cherry Registered User

    Feb 17, 2018
    I completely agree with the posts above, I could only keep my mum in her own home for as long as I have because she's just down the road. Now she has deteriorated and I'm beginning to wonder if I should have made the move to a residential unit a couple of years ago whilst she could have enjoyed the company more. I have a bit of experience with UTI's, they can put you on a daily low dose of an abtibiotic, for three months. She may always need them Just request it.
  6. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    No, you aren't being at all callous, awful or selfish in considering a care home - you are being brave enough to look to the future, understand your own limitations and explore what options might be best going forward.

    There is no right or wrong time for this and comparing yourself to what others have done is not a relevant measure because we all have different circumstances and the pattern of how dementia unfolds varies greatly from individual to individual.

    For example I looked after my husband at home for nearly for six years before he passed away (he spent the final few months in a dementia ward at a local hospital and, had he survived, he would have been discharged to a nursing home as his needs were so extreme by then).

    Two years previously, he had also spent two months in a secure NHS unit after becoming psychotic and unmanageable at home. However, due to my own personal circumstances, I was able to have him back home once his medication had been tweaked. I was told at the time that having my husband back home once such a stage of dementia had been reached was very unusual.

    Now, had that been my mother, and had she followed the exact same path as my husband's illness, I can say with hand on heart that entry to care home or nursing home would have come so much earlier because I simply could not have given the same degree of care as I was not living under the same roof.

    Only you can judge the situation and circumstances you are in and how best to make sure mum is safe and properly cared for going forward. That might be a care home, it might be a care package of some sort.

    I wish you well as you explore the options - as others have said, a needs assessment will give you a better idea of what those options might be.
  7. TillySM

    TillySM New member

    Sep 13, 2018
    Thank you so much for your replies. I certainly feel a little better now.
    I saw mum in the hospital today and although she was ok when I first got there, she wouldn't eat her dinner and was often drifting off. They have put her on nutritional shakes as she isn't eating very much which is rather a change from last week.
    I definitely notice her forgetting words and things more now, but I think that's probably because we actually have the diagnosis and I was in denial before.
    I am yet to hear from SS still but hoping that I will shortly this week.
    At least when mum was quite with it when I got there, we had a brief chat about care and she seems to think its a good idea so fingers crossed she will continue to feel that way.
    Thank you again for your replies, i really appreciate it.
  8. Sirena

    Sirena Registered User

    Feb 27, 2018
    I couldn't see anywhere (sorry if I missed it) if you said if your mother is self-funding, and if you have LPA? If you are relying on SS, they will make the decisions about what type of care they will provide at what stage, because they are paying. Their aim will be to keep her at home as long as possible, a care home is a 'last resort' because it's more expensive. But if your mother is self-funding you will get a lot more choice of the type and timing of care, and having LPA gives you a bit more control of the situation. To me it sounds as if your mother is no longer safe at home so I can entirely understand why you are considering a care home.
  9. TillySM

    TillySM New member

    Sep 13, 2018
    Thank you. Yes she would be a self funder, for a short while at least. She hasn't masses of savings, and her home won't be worth that much I don't think as she lives in a static home.
    I have had a small update from the hospital to say she is being put in isolation due to some bowel trouble, but I asked if there was any news re her discharge. They said that an OT has been to see her and they are trying to decide if a once a day package of care is enough.....I said well yes if you want her back in hospital within a week....
    Unfortunately I only have enduring POA, but I have the forms for H&W. When i get a point when we can actually talk about that a bit more without her falling asleep on me, I hope to get her to sign them.
    The fun continues huh. Thank you again for your replies, they're most helpful.
  10. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    If your mum is self funding you can sort this out a lot quicker than waiting for social services. I agree with other posters your mum has probably reached the stage of needing full time care. With my MIL we just knew it was right with her high risk of falls and getting to the stage of forgetting where her toilet was in her own home. I didn't bother with social services my husband and I just organised it ourselves. As she was in hospital we had to move quickly but it took a week to find somewhere
  11. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    Just seen your post about OT. My MIL was offered that and I refused to have her back on her own in her home . She would never have coped. You have to stand your ground.
  12. Sirena

    Sirena Registered User

    Feb 27, 2018
    Hi again
    As she is self funding you don't need to involve SS unless you want to, you can arrange a care home yourself. The care home will do the assessment to check they can meet her needs, they will visit her in hospital if necessary. SS will aim to keep her at home with a care package. As another poster said today, these care packages (4 x 30 mins a day) are not much help to someone with dementia.
  13. TillySM

    TillySM New member

    Sep 13, 2018
    Thanks again guys. This is all so helpful.
    Unfortunately mum has been diagnosed with an abdominal anurism now, so she is feeling rather unwell :(
    Weirdly, not sure if its because she has the distraction of the pain, she was far more lucid for a sustained period than she has been for months. She has said that she would like to remain at home so that she can still have her dogs, so i think we will have to have a look at home care options for now.
    Just got to hope we can get her fixed up now so that she is able to get home in the first place.
    Thanks again for all the replies.
  14. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    Middle England
    You are not being awful or callous, you are doing your best and taking difficult decisions at a difficult time.
    I too had (the old) EPA for my mum. It really wasn't a problem at all. Mum's doctors took charge of all the medical stuff (well...that's what they do best, Isn't it?) but were very good at including me in the decision making processes so I didn't feel that not having a 'modern' H&W was a problem.
    Best wishes - Twiddler.

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