Another 'Feeling Guilty' thread

Discussion in 'I care for a person with dementia' started by VBees, Feb 6, 2016.

  1. VBees

    VBees Registered User

    Sep 20, 2015
    Our mother is 90 this year. She's had Alzheimers for over 10 years now and finally went into a care home 2 weeks ago. I went to visit her a few days later and although she seemed fairly content and calm to begin with, she suddenly became quite lucid and seemed to have some insight into her fate. She asked me how long she'd been there and when she was going home. She then launched into a vitriolic attack - she couldn't believe we had just left her in a 'place like that' without talking to her about it first. Did she still have her own home or had we sold it? She has no short term memory whatsoever - in fact its impossible to have any kind of conversation with her. She will also have completely forgotten that I was there.
    I can now totally see why some unfortunate people get completely forgotten about in care homes - from this first experience, my visit served only to upset her. Will this situation ever improve?
    I'd be really interested to hear how others have coped/are coping with this situation?
  2. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    #2 Witzend, Feb 6, 2016
    Last edited: Feb 6, 2016
    You have all my sympathy - I have been there and do know how hard it is. My stomach was often in knots before visits, and sometimes I chickened out because I just couldn't face it.

    What some people do is tell the person that they're there for a rest, while they build their strength up, or while their meds are sorted out - on doctor's orders! (Whether it is or not). If the person's short term memory is already bad they are unlikely to remember that you said the same before. You don't need to tell the person that they will never be going home if it is going to upset them or make them angry. It's a case of whatever will keep them happy - or at least not angry and upset - for the moment.

    I could not do the 'doctor's orders' thing with my mother, since she was still with-it enough to know that she hadn't been 'under the doctor' and didn't have any health problems apart from dementia. What I hit on eventually was to remind her that she'd often been anxious and frightened at home (true, not that she could remember) and that I was looking for a nice little flat for her, just down the road from me. ('And as soon as I find a really nice one we'll go and have a look together' - the fibs you have to tell sometimes!).
    She had always been an inveterate 'mover' and had often talked of moving to 'a little flat' so this would pacify her for the moment. I repeated it many times and she never remembered that I'd said it before.

    Visits were often still not easy, though, and it did seem quite a while until she stopped asking. I hope you find a way that eases your mother in without too much aggro - this stage will almost certainly pass eventually - I do hope it won't be too long.
  3. Clueless2

    Clueless2 Registered User

    May 14, 2015
    My mother went into a care home in August 2015. In her pre dementia days this would have been her very worst nightmare. I was not capable of taking her the day she went in, nor did we tell her that she was going. For some time previously she had been resentful and on occasion physically aggressive to me, all as a result of her dementia.

    For your mum it is still very early days. It is possible that just seeing you might trigger emotional memories. Prior to going into the home my mum only needed to look at me and the scowl would appear on her face! I waited a week before visiting, which gave sufficient time for her to be glad to see me instead of angry. Now when I visit she is so very happy and pleased to see me.

    In all likelihood it will get better. Your mum will begin to relax and find the home routine and residents a good distraction. My mum does still occasionally ask why is she there?, when can she come home? There are plenty of other threads about "going home" on TP. In essence it usually means to that place or point in time when they felt safe. Mum used to ask the same questions whilst sitting in the lounge that had been their home for 30+ years. Thankfully she always had a healthy respect for her GP, so telling her that he advised she stay there, to get over her exhaustion (telling her she loved us too much and did too much for us all the time, makes her feel good) works well, followed by a distraction eg cup of tea.

    The "going into a home" is a huge step for you too; letting someone else be responsible for her care, will they understand her etc. not dissimilar from a child starting school, especially after all that sewing of name tapes. Just give it time, allow yourself time to relax and when you visit keep that relaxed vibe and smile in place, regardless of whatever is going on in your head. Good luck, it will become easier for you both.
  4. looviloo

    looviloo Registered User

    May 3, 2015
    Vbees, my heart goes out to you. My dad moved to a care home last year, and although I thankfully didn't have to cope with any anger as such, I did have to deal with a barrage of 'why?', 'when?' and 'what?' type questions, over and over. It was very difficult. I visited very regularly to begin with, as much for me as for dad, and realised that my visits were triggering some distress, but did my best to appease dad and reassure him as best I could.

    Dad takes a lot of medication, so I was able to use the 'under doctor's orders' excuse. Also, 'we'll see how things go once your shoulder has mended' (he broke it in a fall). In a way, I conspired with him in blaming other people for his predicament and therefore became his confidante, someone he could complain to. It was the mental health nurse who told me to do this, because she realised that dad might turn on me otherwise.

    It is very, very difficult... but it does get easier. I hope this doesn't sound flippant, but it reminded me of the day I dropped my daughter at play school for the first time. She cried... I cried... she was upset with me... but it got easier as she settled in. Same thing with dad. He still raises old issues ('what have you done with the house? etc) which I try to deflect, while at the same time benefiting massively from where he lives now.

    One thing I tend not to do is reason with dad about the situation because it doesn't help. I use the same mantras over again, choosing ones that he accepts the most easily. And I've cut my visits from almost every day to once a week. It seems to be working (fingers crossed!). I'm confident your situation will improve! It just takes time x
  5. Sunset-lad

    Sunset-lad Registered User

    Oct 29, 2015
    Oh clueless, you sum it up perfectly. Letting someone else be responsible, hoping they will understand her, hoping she will make friends and have people to talk with. That's exactly how I am with my mum. She has been in her "new home" for 3 months now. She still thinks she will be going home. I don't tell her she won't be. I still feel guilty. I never had children so I can't draw on the experience of that paternal bond. All I can appreciate is that how I feel now, must have been how my mum felt when I was small. I try and tell myself all the positives, like she is safe, warm, supervised, the risks of falls is greatly reduced, and yet despite all this, the fact that I know I won't get called out of work or bed to go round and pick her up or reassure her that no one is under the stairs or in the garden, just makes me feel the decision I made , although in her best interests and safeguarding, is a totally selfish one.

    Am sure it does get easier, and as the dementia progresses even further the need to have done what I have becomes clearer, hopefully the built also recedes......... We shall see
  6. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Most likely, 2 weeks isn't a lot of time for her to adjust to her new reality, hopefully, not before too long she'll find her place in her new environment and possibly come to enjoy it or at least fit in.
    My wife has only been sectioned for 4 weeks but the throughput of patients is maybe one every couple of days (generally speaking) but watching the new ones come in and the patient and their relatives handle it is and eye opener.
    The main thing is to keep it calm 9and lie to the back teeth); house , still there but needs repairs, can't be lived in leaks, storm damage or whatever. A "place like that" well if this hotel isn't good enough we'll speak to the manager or move you somewhere else...while the house gets repaired or some other load of man's dangly things (or indeed other male creatures dangly bits).

    "I can now totally see why some unfortunate people get completely forgotten about in care homes"... I find that a bit sad the fact they may forget you isn't an excuse for you forgetting them, however, you do also say "my visit served only to upset her" and so you have to do a balance between the two, being there for her but not a a cost to your own wellbeing. Give it time and do what you feel is right, it's only been 2 weeks and I have cheese in my fridge older than that so it's early days.
  7. VBees

    VBees Registered User

    Sep 20, 2015
    Thanks all

    I suppose I was a bit confused by one of the managers at the CH telling me that I'd 'have to tell her' the truth - in other words, 'stories' were not an acceptable way forwards.
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #8 Shedrech, Feb 7, 2016
    Last edited: Feb 7, 2016
    Hi Vbees
    I too was told by one of my dad's care home staff that the latest thinking is that the truth should be told to people with dementia at all times

    Well, to me, 'latest thinking' is Ok but changes a lot so latest soon becomes out of date and then comes back again on a merry go round - and what exactly is 'truth'?

    My dad has 'no capacity' to understand, doesn't remember much, as in facts and what has happened, but he does hold on to emotions - so he may not know what has made him happy/sad etc but he does know he feels that way
    so I tell him what will keep him less anxious in any situation - and I don't tell him what will make him anxious; why cause distress when neither he nor I can alter the situation

    Emily Dickinson has a line in her poetry
    tell the truth but tell it slant

    so saying eg the doctor says you need to be here for a while to recuperate - is not a 'lie', it's the 'truth' of 'you need to be in a care home for your safety' but put in words that cause less distress

    so I say what I think is best - he's my dad after all - and when he says anything like your mum did, I don't engage so I don't exacerbate his distress - I don't reason or argue - I keep calm and smile - I leave the room (just need to get something ...) - I pop back, and if he's still anxious and I know I won't be able to settle him, I leave and go home, so he can calm down

    sorry - I'm on a personal ramble !
  9. VBees

    VBees Registered User

    Sep 20, 2015

    That is precisely how I am going to handle it. Thanks.
  10. elizabet

    elizabet Registered User

    Mar 26, 2013

    Can only reiterate what others have already said-it is early days yet . keep persevering and keep visiting, being economical with the truth - e.g the doctors want you here for a rest worked for me and my Mum as did changing the topic of conversation or as does distraction it is quite challenging. My late Mum was forgetting to take her medication, forgetting to eat properly and was not safe in her own house( also got duped by some bogus workmen who "repaired" some tiles on her roof and she parted with a large sum of money).so was much safer in a care home.
  11. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I think there's an idea that it's 'disrespectful' or somehow against the person's human rights, not to tell them the truth. I was told by CH staff that I should tell my mother this was her home now. But in those very early days I still knew her far better than they did - I knew what would keep her reasonably contented for the moment, and it certainly wasn't that.
    The thing was, if they said it to her, she would apparently accept it, because she didn't like to be rude or make a fuss, but if I had said anything of the sort, there would have been a great deal of anger. In any case, she would forget what anyone said in minutes, if not seconds, anyway, so where was the harm in saying what would keep her happy? I can't for the life of me see the objection.

    It's always rather different for CH staff, who are not emotionally involved, who aren't carrying emotional baggage, and the sight of whom doesn't instantly trigger 'I want to go home!'
  12. jknight

    jknight Registered User

    Oct 23, 2015
    My mum is nowhere near needing a care home but I still do the 'constructive' lying'! If it makes our loved ones happier and more secure, is it wrong?

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