1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Janeem

    Janeem Registered User

    Jan 23, 2016
    hello- this is my first post.
    My mother has been in a dementia care home for almost 2 years and now has very advanced Alzheimer's. The home, which is only 15 mins from my home is caring and mother is physically looked after very well.
    For the 5 years before she went into the home she was extremely dependent on me and my life became extremely stressful and exhausting.
    Since she went into the home, obviously my life has improved hugely and I feel as though I have my freedom back.As an only "child" I have always been very concerned to do the best I can for my mother and always felt very loved.

    The situation I am in now, is that I feel as though my visits don't do either her or me any good. If she is awake when I visit, she tends to become very agitated. Today she tipped a cup of tea over me, pinched my arm, pulled my ear and pushed me out of her room. She rarely says anything coherent and sometimes just closes her eyes when I arrive. I guess her agitation is because she isn't able to speak to me.

    I visit 3 or 4 times each week, sometimes only briefly if she is asleep. My visits sometimes reassure me, but more often than not are very uspsetting .
    Looking at other posts on this thread I can see that other people have similar feelings after visits. I suppose I am looking for some reassurance that it would be OK to visit less often. Or should I keep going very regularly even though it seems to distress her?
  2. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Hi Janeem, I suggest you speak to the CH staff and ask what she is like when you are not there and also does she take much settling after you have visited.
    If, as I suspect, she is calm and settled when you aren't there, then certainly you can cut your visits down perhaps to only once or twice a week for short stays....really to reassure yourself as Mum doesn't seem to benefit from your time. You can always up your time if you feel that she knows you are there or is asking for you, but don't feel guilty about not visiting. If your being absent is keeping her calm, then you are caring for her even if you don't visit.
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #3 Shedrech, Jan 23, 2016
    Last edited: Jan 23, 2016
    Hi Janeem
    cragmaid has written pretty much what I was going to say
    You have been very much present in your mother's life and care, so you know that you have done everything you can for her. She is safe and well cared for in her care home, you have seen to that.
    If your visits are not positive for either of you, it may well help to cut down the frequency.
    Have a chat with the staff and the manager just to set your mind at rest that your mother is generally settled; then let them know how often you will continue to visit, so they know you are not disappearing, and agree with them that they will contact you if they have any concerns.
    You can always call once a week as well, just to get an update.
    I'm trying to tell myself that missing the odd visit to dad will not mean his world ends - in fact I haven't been able to visit much over the last 2 weeks as the home has had D&V outbreaks - when I did see him after a week he showed no signs that he realised I hadn't seen him for so long. So I'm thinking me going away for a holiday will be just fine.
    We have a right to continue with our own lives. Neither of us are abandoning our parent, after all.
    best wishes
    PS - forgot! Welcome to TP :) It's a friendly and supportive forum - so do keep posting
  4. marionq

    marionq Registered User

    Apr 24, 2013
    If she's pushing you out of the room could she be telling you to go and get on with your life? I have three daughters and in the same situation that's what I would be saying. You already know she loves you from your earlier life now she's giving you permission to move on.

    Good wishes.
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Hi, Janeem, and welcome to TP. I am glad you found your way here; there is a lot of good advice and support on the board.

    I am sorry to hear about your mother and the difficulty you are having with visits. I'm also an only child, my mother has Alzheimer's, and moved into a care home near me a year ago.

    Cragmaid and others here have echoed my own thoughts. Visiting is a way to find out how your mother is doing, but talking to the staff on a regular basis is another way. I have one particular nurse I usually talk to, to get updates, and I can also email her, which I find helpful. It is also good to know what the staff see, when you are not there.

    That might help you to decide how much the visits are benefiting your mother, which in turn might help you to figure out if you are visiting because it has benefit for your mother, or just visiting because you are in the habit of it, or think you ought to, or think you will feel guilty if you don't.

    Is the agitation when you visit, something new or different? Has she been checked out for a UTI or other medical problem? That can cause behaviour changes.

    It could just be a phase, or pain, or the luck of the timing, in which case it might not continue. Or the agitation could be related to a decline in her condition. Either way, you might give it some time and see what happens.

    If she is very agitated when you visit, I doubt that will do either of you any good, and I would definitely cut down on the frequency of my visits. If you want someone to give you permission, then here: I give you permission to not visit your mother for a week. Then go back after a week and see how she is, and in the meantime, get updates by phone from the staff.

    You might also talk to the staff about what you've observed and see if they have noticed something similar, and if they think she should be checked by her doctor.

    I hope you are able to figure something out that works for you. If you are so inclined, and when you have time, please come back and let us know how you get on.
  6. Janeem

    Janeem Registered User

    Jan 23, 2016

    Thanks for that. Staff tell me that she does occasionally ask for me but I do wonder if that's more habitual than really wanting to see me. She used to ask for me all the time before she went into care. I think at the moment she does seem to be calmer when I'm not there, so I'm going to try just going a couple of times over the next 2-3 weeks and see how she is. I do find it quite hard to stay away though as I want to reassure myself that she is OK.
  7. Janeem

    Janeem Registered User

    Jan 23, 2016
    THanks for the welcome

    Thanks for your thoughts and for the welcome. I wish I had found this forum earlier after years of feeling quite isolated with some of the issues that come along with this condition.
  8. Janeem

    Janeem Registered User

    Jan 23, 2016

    I'd like to think that was the case, though Mum didn't have that attitude when she was more conscious of her actions. She very much wanted to be with me all the time and I really felt that I was losing my own life. I suppose I feel that subconsciously she is very angry with me for leaving her in a situation that is out of her control and she doesn't like, which is why I visit her a lot. But now that seems to make her worse rather than better. I guess if my visits make her more agitated then its probably better that I cut them down a bit.
  9. Janeem

    Janeem Registered User

    Jan 23, 2016
    THanks for advice

    Many thanks for your long reply. I'm really glad I have found this forum.

    Staff at Mum's care home are lovely but do not have much talking time.As I have started to try and say to the other comments as well, I think I'm going to cut my visits down for the next 2-3 weeks and see how she is. Mum has always been an agitated person and seems to swing now between extreme agitation and calm days when she mostly sleeps. The home and doctor have tried various drug combinations to try to calm her down without much luck. We think its just the way her condition is deteriorating. At the moment she is on very few drugs but is on a "maintenance level" antibiotic to keep UTIs at bay.

    Yes- I do go, to check how she is but also because I feel very guilty if I don't. But I guess if my visits make her worse, then I need to deal with my own guilt differently. I know the home will ring me if there is a major concern.

    THanks for your advice
  10. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Janeem, for what it's worth (given that I'm a virtual stranger on the Internet), I think it's perfectly reasonable for you to try cutting down on your visits, to see what happens.

    The guilt is very difficult to manage. I think everyone here on TP probably knows what that is like. A lot of people here call it "the guilt monster," which I always find amusing. You're absolutely right that you may need to find a different way to deal with your guilt. I also know it's very easy to say, and very difficult to do. If it were as easy as just telling yourself, don't feel guilty, then none of us here would ever need to talk about it.

    Another very good piece of advice that is oft-repeated here on TP is to be kind to yourself, and that's another one of those things that's so hard to do.

    I'm sorry that I don't have better suggestions for you.
  11. MeganCat

    MeganCat Registered User

    Jan 29, 2013
    South Wales
    Hi Janeem
    My mum is at a similar stage as yours it sounds, been in a care home for 2 years, nursing for the last year. I have reduced my visits to twice a week now - for about an hour each, and although initially guilty am now comfortable with the decision. Although she sometimes smiles at me i dont think she necessarily differentiates between me and the carers and hasnt recognised me by name for almost a year. She chatters away in her own world, lots of made up words, you cant follow what shes saying. If you speak to her she doesn't stop to listen or recognise what you are saying anymore, even names of her family, or that you are talking to her, just keeps chattering.
    All i get from my visits now is knowing that she is well and content, and eating, and feeling that i have spent some time with her and held her hand (which is the only physical contact she still seems to enjoy - i think she finds hugs a bit confusing/ invading). I really havent seen any negative effects from reducing my visits - no clingyness or even recognition that ive missed a visit. Perhaps try it and ask the carers if they notice a difference and see if you do. I know the home will ring me if they have any concerns. I hope you find the right balance for you both.

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