1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

5 days to to and feeling upset and anxious

Discussion in 'I care for a person with dementia' started by josephinewilson, Mar 12, 2016.

  1. josephinewilson

    josephinewilson Registered User

    May 19, 2015
    So next Wednesday I am taking my mum to a nice carehome I found for her. She visited last week as a day visitor, loved it, and will visit on Monday as a day visitor as well. But she thinks it's just a cafe for old people where you go for the day and then come home at night. I've been telling her they will look after her while I am away on business but the penny hasnt dropped. On Wednesday I'll drive her there and they will take her to her room (very nice, which I will have personalised a bit and brought some of her clothes) and I will explain she'll be staying there tonight while I fly off to America.(half-truth)

    And then I will leave.

    The plan is, if she settles during her trial visit, she will stay permanently. And I know for certain it is the best thing for her and the care home and people are lovely. She will think so too, once she gets into it.

    But every day since I signed the papers last week I have been thinking about that moment of realisation when she sees her room and when I leave her - and feeling like I am dumping a child in a Victorian workhouse! Today I have woken up feeling like I want to cry :(

    I have read all the comments about how much better it is when they are in care homes, about how others went through the same worries and how it all worked out. But I still want to cry. She might think I betrayed her; I abandoned her.
    Or, of course, she might love it and not even think of me. I realise that, but I can't seem to focus on the positive at the moment.
  2. liz56

    liz56 Registered User

    Feb 15, 2015
    North Somerset
    Oh it's a horrible decision to have to make, and we have been there recently . But now we have made the move, and dad is in his care home. When he was living with us ( and doesn't that sound good ' living with his family, being cared for 24/7' ) the reality was that he was often confused, asking for his family , waiting for his parents, didn't know he had a bedroom etc etc.
    Since he moved into care home he has never once mentioned living with us, or asked to come home, or questioned it at all. He only has the same old questions about his mum & dad etc.
    So I suppose we can't begin to understand how individuals with alzheimers think, and we can only try to understand their fear and anxiety.
    Try to be kind to yourself, I think I was too hard on myself !
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hang on in there - you are doing well.
    On the day dont let her see you are upset - people with dementia are very good at picking up vibes and body language. Their reasoning will be - if you are upset then there must be something to worry about. Staple a bright smile on your face and say how lovely it all is and praise the garden/facilities/whatever. Time your departure for when she has something else to distract her and make it brief - no long drawn out goodbyes, perhaps even saying that you need to talk to someone or need to go to the loo.
    You can cry when you get outside.
    And take a big stick to knock that guilt monster off your shoulder.
    I hope it goes well.
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Josephine, I think you are doing great. I know there is likely no way you can do this, but try not to overthink it all too much. Please be as kind to yourself (forgiving, gentle, understanding) as you can, whenever you can. Also, if you'll forgive me a bit of shouting:


    We are on your side and in your corner on this one. Many here have been through this and it's difficult and scary and awful, but you will get through it. It could be okay. It could work out.

    I agree that as much as possible, no matter how you feel inside on the day, it's important to have as calm a demeanour as possible. My mother is amazing at picking up on subtle changes in body language, tone of voice, and facial expressions, even though she doesn't always understand/comprehend the conversation any longer. (I sometimes think that acting and improv comedy lessons might have been good preparation for dealing with someone with dementia!)

    So, yes, I think that appearing calm and pleasant and positive on the day are important.

    Also, no long, drawn-out goodbyes, as those will upset you and confuse your mum. Just leave. If you are having trouble, enlist a member of staff to help you, or have an excuse ready.

    It might help if you can plan this around lunch or tea, stay for the meal/a cup of tea, and then leave afterwards. This may help with the sense of routine and make it feel more "natural" or at least less awkward, for you, at any rate.

    When I leave, I never say to my mother that I will see her tomorrow, or Wednesday, or next weekend, I always say, "see you soon." Anything else agitates her as she will try, and fail, to keep track of the time.

    I am sorry you are feeling sad and upset, but understand, because it's very understandable! Keep reading the success stories. Think about how relieved you will feel, to know she is safe, warm, well fed, with company, and staff available 24/7. Think about all of us, thinking of you. And when you have the chance, and if you feel like it, keep posting here, and keep us updated.

    Wishing you all the best.
  5. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    Josephine, you are doing fantastic..........sis and I are still trying to persuade mother it is for the best, where she will be "cared" for.
  6. netsy22

    netsy22 Registered User

    Oct 31, 2015
    You are so doing the right thing - a relative of mine did the same to her mother when she went on holiday and after a few grumbles she wanted to stay and came to love it. Mothers are not our children so go with a smile and without guilt. Expect it to go well and it will.xxx
  7. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    I don't think you would be normal if you didn't feel like this. It's so hard making the decision and if you weren't agonising about it and wondering if you were doing the right thing then you wouldn't be a good daughter. But you are agonising about it...like many of us have...and you are doing the right thing.
    Once you have got through the day next Wednesday you will start to feel better about it and more confident.
    I was dreading the day that I took my parents to their CH ...and hadn't slept for about a week worrying about it...but the day was easier than I thought it was going to be and it was a relief to have done it. You are not abandoning your Mum, you are ensuring she is safe and cared for.

    I hope it all goes well.
  8. josephinewilson

    josephinewilson Registered User

    May 19, 2015
    3 days to go now..

    Thanks again -not long now! I know and appreciate all the comments here. Ironically, I'd be giving the same advice if it were to someone else, but here I am again, exhausted, because I couldn't sleep last night for thinking of how I am deceiving my mum. We are going off for another day visit to this "hotel where my friend works" My mum had a great time last week and is happy to go again. I have been dropping into the conversation every now and then how "my friend" will look after her there while I am away but it just goes in one ear and out the other and I think when she sees that bedroom with her stuff in she will suddenly realise the deception and get upset.
    Or maybe not!!
    I am about to pack away some of her clothes and personal things to put into her new room this afternoon unbeknown to her, while she chats happily away in the day centre lounge. Going behind her back again.

    I tell you what though: this is such a lovely care home that I told my 2 grown up children that in 30 odd years if I get dementia, they mustn't worry one bit about sending me there:):)
  9. Aisling

    Aisling Registered User

    Dec 5, 2015
    Thinking of you Josephine. You are caring for your Mum, not going behind her back. She will be fine and settle in well PG. I nearly had kittens taking OH for respite the first time. He settled in no problem.

    We are all thinking about you and sending support.

    Aisling xxxxxxx
  10. josephinewilson

    josephinewilson Registered User

    May 19, 2015

    I took her for another visit to the attached day centre today. The day centre is in the same building, same front door, same d├ęcor, so it is as near as I can get to the actual residential home wing that she will be staying in which is on the first floor, self contained.
    Despite my worrying she was fine. (Just like toddlers at nursery!) Although I saw her looking out of the window when I arrived and she spotted me with delight. I wondered if she had spent all day looking out of the window for me, but if she did, she certainly seemed perfectly happy and her parting comments were "I've had a lovely day. When are we coming again?"

    I think she is enjoying the engaging with other people, and the cups of teas on tap - all of which will be the same in the residential home upstairs, except she will also see her bedroom I worried when we first went there because when we went in, there were people who were obviously in far greater stages of dementia than she is - some emitting strange noises, others looking quite (to use her word of years back "gaga" ) and I worried she would think I had brought her to some dementia home! But she never even noticed, or at least didn't bother in the slightest, which was very positive.

    I told her again today that on Wednesday she's going to stay there for a few days while I am away - but she doesn't say anything and it obviously hasn't registered that I mean, sleep in a different room..
    I have begun to personalise her room today and will add some more home touches tomorrow. I worried she might notice if I took too much of her stuff, like photos -but she hasn't noticed.

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