1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Armygirl

    Armygirl Registered User

    Feb 1, 2014
    15
    Hi

    It's been ages since I have been on here as life got crazier with mum's declining health. Mum has alzheimers and vascular dementia. In Jan this year she had a UTI which caused a huge deterioration. We increased the package of care at home. Six weeks before I was due to have a well earned rest and holiday and thinking that she was going to stay with my brother, he announced that he would not have her at his house whilst I was away. We had to quickly find a CH-which luckily we did - a really nice one and got her into respite. When I cam back from my holiday, feeling more relaxed and recharged I bought her back home. My brother wanted her to stay in but I had promised she would come home and I could not bring myself to break that promise. Although my head was telling me she would be better staying at the CH my heart was telling me not to break the promise I made. However she seemed to understand that if she was no longer safe in her own home, despite the care going in as well as myself caring for her as well; that we would have to think about her going back. She was back home for about three weeks and all was ok. She was very stubborn for some of the carers going in and refused to stand or go to bed and so forth. She developed three pressure sores as all she was doing was moving from bed to chair and back to bed. Due to her osteoarthritis and lack of movement her knees became very swollen and she could not bear her own weight. Unfortunately this week, she was found on the floor and paramedics were called out. It was this that made me decide that really for her own safety she had to be in a CH permanently. We managed to get her back in yesterday to the CH she had respite in. She became very angry at me and my brother about sending her back and this time she realised that she was not going home again. However she is adamant that she is not staying there and she will be going home. When your loved one is in a CH to be safe, we know that it is the right decision despite al the guilt that is felt. I know this is the right decision for my mum despite the fact that she does not. But what do you say when they ask you every time about going home. How do you answer them? My mum knew full well yesterday, that as she left her house she would not be going back and she looked so very sad. Today all I keep doing is crying despite the fact that the right thing has been done and she is safe. :(
     
  2. #2 DazeInOurLives, Apr 11, 2015
    Last edited: Apr 11, 2015
    Sad as this experience has been, the fact that you kept your promise to her and really tried to make it work at home will help both your resolve and your conscience. So good to have this to remember at times in the future when things might not go so well for a while and you find yourself briefly wondering if a CH was avoidable.

    It sounds as though your Mum's memory may not lend itself to this, but when my Mum went into respite care I had planned to explain that there was some structural work needed to be done in her house which meant it was temporarily uninhabitable. I even considered flooding the downstairs toilet to give her a chance of having a real memory of something dramatic. I figured that both she and I could be collectively outraged at the situation and that her pain and sadness would be lessened. (It turned out that something really did happen as the wiring was found to be unsafe!)

    Mum returned home too with much increased support for about 7 months but several things conspired to make it absolutely unsustainable. Mum going into care was much easier as she was mentally worse this time and, amazingly she never really questioned why she was there. We speak about her house and garden as though they are there for her whenever we need to be there, but there is always a reason to stay here for a little longer. "The kettle's on; there's a cup of tea coming soon." Or, "Dinner will be ready soon, it looks too good to miss." I would never have expected her to accept it but thankfully and amazingly she kind of does.

    In your situation, I can recommend a few things to try, in order:
    * Listen to the words she uses and use her own understanding of the situation for her reasons for being there and perhaps reflect them back to her. Openly share her sadness and (crucially) her helplessness in the matter. It is your helplessness too.
    * If she acknowledges a physical problem, then she may accept this as a period of convalescence which is 'always due to end in a week or two'.
    * Experiment with different explanations for why she is there and carefully assess her reactions to them. Choose the response that makes her feel the best and get everyone to use the same response.
    * The best thing would be to try to avoid any discussion about it at all if you can divert conversations, but it sounds unlikely that she'll keep off the subject at the moment.

    When you leave, perhaps don't announce it but slip away as she is about to eat or do something that will occupy her mind for a while.

    It's sad and tough for you all, but time will help if the staff can support her.
     
  3. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    179
    Hi Armygirl,

    I know and understand every word you have written.

    My story is the same.

    I have just got back in from visiting the care home today and my mom is very agitated again. She gets very angry and uptight when I try to tell her that this is her home now. She won't have it at all. She wants to live with me.

    I try to change the subject but she brings it back round the the same question over and over again. We slipped away when they were bringing in the tea time meal and from the stairwell I could hear her shouting and ranting. It's breaking our hearts.

    But in answer to your questions, you have done the right thing, a care home provides the 24hour care she will need, she is warm, well fed and her personal hygiene is taken care of, (something we were struggling to do). The guilt, I am afraid, does not leave you, but that is ours to deal with. The staff tell me that when we are not there she is absolutely fine.

    I really should practice what I preach and take my own advice.

    I hope you find peace in your own heart soon as you have done the best for your mum.
     
  4. Armygirl

    Armygirl Registered User

    Feb 1, 2014
    15
    What do I say

    Thank you so much for your advice and support. I will certainly be using the ideas you have suggested. This forum is wonderful. Everyone holds your hand and gives such comfort along the way.
    DazeInOurLives - you also made me smile about flooding the toilet so a special thank you for that - I have not smiled much today.

    Thank you :)
     
  5. Bod

    Bod Registered User

    Aug 30, 2013
    1,164
    As her pressure sores heal, you will see you have made the correct decision.

    Bod
     
  6. Armygirl

    Armygirl Registered User

    Feb 1, 2014
    15
    What do I say

    Hi

    Been to see mum this morning remembering all the advice and it was much more positive than I thought it would be. I have come away feeling much more lighter and in the complete knowledge that the right decision has been made. I know we are in for tough times as well but I feel so much better today.:)

    Thank you to all for your support and peace and love to all of you and your loved ones suffering from this cruel and horrid illness.
     
  7. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    179
    I am so pleased you had a more positive visit today.

    We did too! I agreed with everything she said, even the most random, off the wall statements and it worked well. She told me she had been out dancing the night before and I just said well how fantastic, did you enjoy yourself etc and had positive feed back from mom.

    So lets hope its onwards and upwards for us both :)
     

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