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Broaching the subject

Discussion in 'I care for a person with dementia' started by Fergie28, Feb 2, 2016.

  1. Fergie28

    Fergie28 Registered User

    Feb 2, 2016
    Hello, just wondered if anyone could advise? My mum was diagnosed with Alzheimer's a few years back and has degenerated quickly this year. She is booked in for 3 days respite in two weeks but we will need permanent residential care for her soon as my dad is 89 and not coping any more with her care. They have never talked about her illness and no-one is broaching the subject of care homes with her, either short or l'term. I need to do this, as no one else will, I mean, we can't just drive her there and leave her! I feel so guilty already, but dad is up all night as she is doubly incontinent and resists washing, screams a lot etc. He's exhausted. How and when do I start this conversation? She'll forget it quickly, but surely we need to do this? Or do we just explain before we set out? We are visiting the home this weekend in advance of her respite. She's probably going to get completely distressed as she and my dad have never been apart since 1966. Please, any advice would be great. We weren't great communicators as a family, which doesn't help, but I don't want my mum scared and bewildered. I guess I just have to get on and tell her.
  2. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    Hello. I have not gone through this, and won't likely, because we are in hospice now with my mother in my home. My dad's long gone.

    Might I offer my suggestion, anyway? This is how I would handle if it were my mother.

    Don't tell her yet. Wait until the morning you are taking her. That morning, during her breakfast or while dressing, tell her that she is going to be going away to get some rest for now with people who can care for her, so that you can tend to taking care of Dad and see to some things working wrong in the house. She will get angry and disturbed, to be sure, but at least she perhaps will have had a good night's sleep beforehand. Because she is at risk, and your father so aged as well, it is time for him to have a rest - not just respite, but rest. Unless you plan on moving in with them or moving her to your home, this is about all you can do.

    If you could arrange for a month away, this might give your father time to cope with the change and figure out how to live on his own, and it might give you enough time to find an appropriate place, if it's not the place you will have her.

    This surely does make you feel guilty, but if she is aggressive, she can't any longer be left at home with your father. Things can escalate very quickly, as I know from my own experience with my own father, years and years ago, who finally got agitated enough that he fell, broke a vertebrae and crushed two disks, and ended up hospitalized, where he died.

    Just hang in there and wait till the day, I'd suggest. I hope others come along soon who have had experience and probably better advice.
  3. Fergie28

    Fergie28 Registered User

    Feb 2, 2016
    Thanks CJ

    Many thanks. I hadn't thought to put it like that. Sorry to hear about your dad's experience, that sounds really tough. We only have a few days scheduled for respite, but you are right, another solution is required to avoid a crisis. Everywhere has such long waiting lists, but with mum going awol and their living next to the main road, the status quo isn't best for her.
    Thanks again, much appreciated.
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    I would do it a short while before just say the GP is saying that she needs to have some rest to build up her strength for a few days, I would probably take her along to visit and meet the people there, no big deal 'just to show you' and if poss to show her her room. Then just reassure her gently that this is the doctors orders and it will only be for a short while so that she can be properly treated and cared for. When she goes take a bootful of familiar things - a cushion that she always has, her own pillow perhaps - a few pictures, a soft toy, those kind of comforting familiar things. When you leave her tell her you will be back shortly, tomorrow, that you will be seeing her every day/often whatever it is

    and go from there. You are right you can't just dump people. Sometimes the screaming etc is because their world has become so scary, the world of dementia can be a frightening place when all your points of reference like time etc have disappeared.

    This is really useful if you haven't seen it before
    This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

    Do have a look at it

    Do you think that when she comes back (if) your dad might cope better with some carers taking on some of the care.
    It's so tough this journey xxxxxxxx
  5. Fergie28

    Fergie28 Registered User

    Feb 2, 2016
    Thank you

    Thanks so much for that too, will try. Very much appreciated.
  6. Aisling

    Aisling Registered User

    Dec 5, 2015

    Hi Fergie,

    I wouldn't go into long conversations with your mum at this stage. I admit I could be totally wrong. I would make the visit casual this weekend. Say the doctor wanted her to see a nurse etc and see how visit goes. I don't know how much your Mum understands but maybe you can discuss it with your Dad. Your Mum may totally surprise you. Try not to worry long term at the moment and see how this weekend goes.
    Keep posting. TP is excellent.

    Virtual hug.

    Aisling (Ireland)
  7. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    The thing about discussing it in advance is, what if the person insists that they are not going to a care home, they have no need of it? The worse dementia gets, the less likely it very often is, that the person will understand the extent of their illness, and that caring for them at home is becoming too much for the carer(s).

    Obviously you know your own mum best, but leaving it till the last possible moment, and then dressing it up as 'a little rest on doctor's orders, while they sort your meds out' or whatever suits the circumstances, often seems to work well.

    If the person's short term memory is already pretty bad, so that they very soon forget whatever you say anyway, the 'love lies' may often be 'recycled' for a long time.
  8. Fergie28

    Fergie28 Registered User

    Feb 2, 2016
    Thank you

    Many thanks for that, it makes sense. Much appreciated.

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