1. duffy2

    duffy2 New member

    Aug 26, 2018
    9
    Hello,

    I'm new to the forum, but hope other users can help me with their advice and support.

    My mother is relatively newly diagnosed as 'dementia likely' and, in recent months, been prescribed Donepezil (which I don't see having much effect).

    Both parents, prior to diagnosis, had always wanted to downsize from their house to an apartment. As a result of her declining health, I pushed this along in the belief it'd be better sooner than later. When the opportunity of the apartment was given to us, my father and I decided it would be best. I followed all the advice (making your home dementia friendly, etc) and myself and husband decorated the place in a way that was familiar and welcoming - the idea to move sideways with as little fuss or stress as possible.

    2 weeks ago we moved them into the apartment, with nothing to be done and almost all their significant possessions in place. It was, we believed, as gentle a move as possible. The house would remain and the 'deal' was the apartment was to be tried on a trial basis. It ticks every box, a ground floor on a quiet and peaceful development surrounded by trees and gardens. It's really nearby the old house (and myself as a support to my father/both of them). My father has found great relief in managing in a smaller space, as he has had to take over from cooking, cleaning, etc. He is happy with the change. But my reason for asking all users for help is that my mother hasn't settled at all.

    I know it's really early days, and everyone I speak to confirms this, but my mother is constantly asking to return to the house. She won't accept any explanation (or the white lie that we're redecorating it, adapting it and need time before she can return), she asks to go back over and over.

    This is taking a hard toll on my father as he has been with her 24/7 since the move and missed his local groups to ensure she's not left alone. I can do as much as possible and visit every day with my small children and it's seen as a welcome distraction, if only for a while. But my heart breaks for my mother when she continually asks to return to her house and also for my father as he has lost patience and become snappy and sharp with her. He's visibly drained.

    I know the apartment is the right thing. I know people say to ride this out. But how do you do this? My mother's a 'young' 80, my father 78. As I type, my husband has returned to their house to begin painting it (untouched in many years) and try clearing it out with the view that we'll have to return them. We are totally stretched. My siblings are of no help, rarely visit/call, and leave it all to me/us. I see a breaking point ahead and hope to avoid it.

    Any help, support, advice would be so welcome.

    Many thanks.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,023
    N Ireland
    Hello @duffy2, you are welcome here and I hope you find the forum supportive.

    It's a truth that a person with dementia can find security in the familiar as even changing a kettle can cause them stress. However, it's also true that they can settle in time and you did the right thing in moving familiar objects into the apartment.

    I wonder if you might get some value from seeking local support services. You can do a post code check for what's available in your area by following this link https://www.alzheimers.org.uk/find-support-near-you
     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,023
    N Ireland
  4. duffy2

    duffy2 New member

    Aug 26, 2018
    9
    Thank you so much for your reply. It means a lot to have someone take time to do so.

    We had a social worker at one stage, but she recently ended the case saying there was no input needed from her (none had been given). My local AS has been a good source of support (advising a Carers' Assessment is a legal right, whereas the social worker said it wasn't necessary), but I'm stumbling along and learning as I go. Hard to believe this is a relatively early stage, yet has been so hard.

    Thanks again.
     
  5. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,023
    N Ireland
    You are welcome. We are a mutual support forum and I may need the benefit of your experience some day as my wife has dementia.

    If you look at the support services available you may have an advocacy service in your area and I think that you may get good value from that. Otherwise a quick call to the help line may be able to point you at the nearest such service (note the bank holiday hours)

    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm


    Please note that the Helpline will be closed on Monday 27 August for the Bank Holiday.

    We will be open on Saturday 25 and Sunday 26 August as usual. We will reopen at 9am on Tuesday 28 August.
     
  6. Bod

    Bod Registered User

    Aug 30, 2013
    1,206
    If she can see the old house, from the new, would it be possible to erect a solid fence to block the view?
    Using an access route that also didn't pass the old house may help.
    Very last resort may be a Care Home placement for her, as the situation regarding caring for her is only going to get harder.

    Bod
     
  7. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,995
    Female
    I am very familiar with SS closing the case as 'no support needed' when none had been given, they are quick to do that!

    It must be very difficult for your dad to live with your mother being so unsettled but she may settle given time. Earlier this year my mother moved from the flat she had lived in for nearly 50 years, to the completely unfamiliar environment of a care home - lots of people around all the time, totally different layout and routine. She adapted pretty quickly, within a few weeks she was telling me she loved it there. By the time she moved she was at the point which I think is fairly common, she had major 'mapping' problems and did not entirely recognise her own flat. She knew it was 'home' but she had no idea which room was which, the carers had had to put post-it notes on the doors to bathroom/bedroom. (She can still read - I have no idea if the words she reads makes any sense to her though.)

    So don't give up hope that the flat will work out - I know it's easy to say that, and difficult to do. Best wishes to you.
     
  8. duffy2

    duffy2 New member

    Aug 26, 2018
    9
    Thank you, Bod.

    The new place is a 15 minute walk away from the old. However, she often puts her coat on and says she's going back and my worry is my father doesn't handle this in the right way (e.g locks door/keeps keys).

    I know the situation is only going to worsen and who knows how quickly that may happen, but sometimes it seems I can reason with her and explain the downsize is for the best, but other times she'll just continually ask to go back and can't understand why not.

    I sometimes feel it can be a bit like negotiating with a young child who's stubbornly not willing to co-operate, but then I feel such guilt for feeling that way. I hate seeing her so scared and unhappy looking, but yet know a return to the house will bring back all the obstacles, e.g stairs, no downstairs loo, fall risks (had one that she's unsure how/why it happened).

    I'm going to visit shortly, but must admit I've dragged my heels as I sometimes don't feel like I've the strength to deal with it all.
     
  9. Sammyjo1

    Sammyjo1 Registered User

    Jul 8, 2014
    194
    I am so sorry that you are having to go through this period of adjustment and it must be doubly difficult for you as you are worrying about both your father and your mother.

    My husband was diagnosed with Alzheimers 4 years ago and we were living in a 4 storey house which he found difficult to negotiate (it turns out he has PCA which causes visual/spatial problems).

    I found the perfect apartment which we moved to about 18 months ago. The whole process was very stressful and it took him a few weeks to settle down. I was lucky in that he understood why we were doing it but it was a while before he was remotely happy here. I, on the other hand, was and am delighted with the move as it is so much easier to look after things here.

    I suspect the Alzheimers Help Line would be a useful source of information to give you hints on how to handle the situation. I have always found them brilliant when I've called them and strongly encourage you to do so. It's a shame they are shut tomorrow.

    This is a great place to come when you are feeling overwhelmed as everyone is so supportive
     
  10. duffy2

    duffy2 New member

    Aug 26, 2018
    9
    Thank you so much for your message. I'm honestly touched today by the support I've had already.

    I'll be sure to call the helpline as soon as they re-open, I need to make use of any/all resources available.

    You're right to say I'm very worried about both parents and I'm definitely struggling (but can't let my father know as he looks to me to 'fix' things). My siblings don't offer any help/support to them, as I'd said, and this takes its toll too.

    I know the apartment is the answer as my father genuinely wants/needs this, but the asking to go back to the house is relentless and wearing us down. My mother has also worsened since the move in that she sometimes sleeps in her clothes and refuses to change them (refusing to wash too).

    It seems to help just typing this all down, sorry if I sound so negative though!

    Will try the helpline and use the wonderful support I've found on the forum from now on.

    Thanks to all of you.
     
  11. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    475
    North West
    Hi Duffy 2,
    It must be so hard for you worrying about your parents but it is still early days and your explanation of the obstacles says it all. You all know the move was for the best. You probably will not be able to change how your Dad deals with the problem but suggest you praise the current house as much as possible, not discussing previous house and deflecting any conversation about it. Please visit as much as you can for the next few weeks, you must lighten the atmosphere for them.

    It is part of the disease that your mother will forget the previous house (I was wondering if she is talking about the mythical happy house many PWD remember). More a feeling than a place.

    With regard to SS assessment. I asked for one for myself and husband. Initial phone call saying they would contact me within six months, then months later a phone consultation where it was decided there was nothing they could help us with.

    Hope things settle soon for you all.
     
  12. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,749
    Female
    Kent
    Hello, welcome from me too! You’ve had some good advice here, the only other thing I can think of is that you and your dad both tell the ‘same story’. That she cannot go back to the house because of the problem with the roof/ damp/ whatever. If she feels either of you ‘wavering’ it might make her demands worse. If one of you is saying one thing, and the other another, it might make her worse?
     

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