1. purchase

    purchase Registered User

    Aug 31, 2005
    Hello everyone

    I have just returned from a lovely break in Jersey. It was so good to be away from all the problems and just relax.

    While I was away mom's house was finally closed up and all her furniture apart from a few small items that we hope one day to be able to take into mom were either given away or broken up.

    I am going to visit mom tonight and I feel so nervous about it, I dread going to see her knowing that she no longer has a home because all she asks me is when is she coming home and how is her house and garden. We haven't told mom about giving her house up because we feel it will break her. I know that lying to her is the kindest thing to do but I feel so bad about it.

    Also we were told that by now mom would not know us but she has progressed so very slowly, this is good, but my sister and I feel that if we knew this twelve months ago then maybe we would not have been pushed into putting mom into residential care. Is this how all of us feel.

    How long ago that holiday feels. Was it only last week.

    Take care all of you. Any advice would be so very much appreciated.

    Love Jacky
  2. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Do they ever forget??

    It is for me, people keep saying to me, 'I guess your Dad doesn't know you now', the books say, 'They will not remember their immediate family, but may have memories of the distant past'.....BUT, Dad's to the point of not being able to talk, doesn't appear to think much more about anything except eating and walking, but yet he still appears to know me and other family members, even old workmates....When we go to visit, his eyebrows raise, he starts making talk sounds like 'Oh, oh, ohhh' like 'hey I know you!'

    As for Dad going into a home, it was very stressful (he went in in April) and it still takes a lot out of me, but Mum can now visit and love him, instead of fighting him and getting angry at him, I give him heaps of love and attention, and I think on the whole, its probably easier for him, he doesn't seem so stressed anymore (he has his moments where he goes around shaking all the doors, but compared to the anger he was going through at home, this is nothing) and I think he gets better care. (i.e. he's finally put some weight on)

    It will no doubt be hard, while your Mum still wants things from home, we were lucky in that Dad, doesn't seem to have missed much from home. I hear other inmates in his section always talking about going home, the things they have to do at home, but if its any consolation, at Dad's home at least the carers are able to distract them, and they do appear to not think about going home continually.

    Best of luck to you in coping with this time with your Mum. Try not to feel guilty, you are doing the best you can.
  3. daughter

    daughter Registered User

    Mar 16, 2005
    "Is this how all of us feel."

    Oh! goodness, yes Jacky, I recognise that feeling. Mum said to me just the other day that she wonders if she should have kept Dad at home for longer. Dad's illness has also progressed very slowly, he's physically quite fit, and often still recognises us. As you say that's is good, but heaps on the guilt.

    Then comes the moments of 'fogginess' when he doesn't know us, or the times when he does or says something bizarre, or becomes agitated. Then I see my Mum's stress levels rising as she bravely struggles to deal with it, and then I know that we did the right thing. This way Mum gets some time out, but still sees Dad as often as she wishes.

    The problem is, there's never a 'right' time to place someone in a Home, what with waiting lists, choosing the right home and changing behaviours etc. It's more a matter of taking the opportunity when it arises because there doesn't seem to be a better alternative.

    Glad you had a nice break and remember that you can make visits special despite having to tell a few 'porkies'.

    Best wishes,
  4. purchase

    purchase Registered User

    Aug 31, 2005
    Thanks Hazel.

    It's funny isn't it but it always helps to know that someone is having the same problems.

    The problem that my sister and myself have is that for the past thirteen months, since dad died, there hasn't been one visit in hospital, mom's house or now the care home where she has not cried almost continuously. The carers say that she is fine when we are not there and I am sure that this is true but it would be so so good to have one hour without crying both for mom's sake and for ours. It almost seems as if it isn't worth visiting her.

    We have no privacy with her because we cannot go to her room because the crying gets worse. We have asked for psychiatric help but it hasn't materialised because mom is fine until she sees us and to a lesser extent family members.

    It's so hard because it stops us from taking her out as she cries anywhere and this isn't fair on her but we would love to take her out for as long as possible.

    Kind regards and thoughts to you and your mom.

  5. daughter

    daughter Registered User

    Mar 16, 2005
    It must be painful to watch your Mum suffering in this way. You mentioned in a previous post that you believe she is still mourning your Dad because "She thinks that he only died 6 weeks ago."

    I can only re-iterate Sandy's possible explanation for your Mum crying when you and your sister visit. Your Mum may see you as a 'safe' place to cry and, difficult though it is for you, she may just want to cry it out. Does she cry for the whole hour of your visit?

    Here's what I think I'd do: I would take your Mum to her room and let the crying get worse for as long as you can bear. I wouldn't try to stop her from crying or talking about whatever she feels is the problem. I'd hold her, stroke her hand, you don't even have to say anything, just be there. Then I'd gently start to try the distractions,

    "Come on, Mum, let's go and have a cup of tea - do you fancy a ({her favourite biscuit})?"

    I'd get busy, opening the tin, getting something else out of my bag to show her - get a CD player out -

    "Let's listen to ({favourite music})" etc. Anything to take her mind away from the crying.

    I hope I'm not sounding condescending, as I expect you may have thought of - and tried - all this before, but I know sometimes it's difficult to know where to start dealing with all these different unexpected behaviours. This is only what I would do anyway and would probably have to be repeated at every visit to start with, but hopefully, eventually you may begin to win her round and start taking those trips out.
  6. TED

    TED Registered User

    Sep 14, 2004
    Totally understand how hard this is when your mum starts crying
    I know this might not help, but all I do know is that I end up crying myself, and as a result, mum stops. Because she's worried about me being upset, and sorts me out. Now that I cant work out at all as it was her that starts me off, Still does mean that for now she is still 'with us'

    Agree with everything daughter says about making drinks, bickies etc as distraction works wonders, but for me the most important think is making her comfortable and let it all out.

    anyway, more support and power to you all
  7. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I think it proves the she is still with you.
    You are upset and she comforts you.This is what mums do.
  8. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Norman is absolutely right. She is being "Mum" and it's wonderful that you can still have that.
  9. purchase

    purchase Registered User

    Aug 31, 2005
    Hi everyone

    Visited mom and it wasn't as bad as I thought it would be. My son came with me and we were able to distract her when she started crying so not all the visit was tearful. She seemed okay. One of the things that I have noticed recently is that she doesn't follow conversations. You can be talking to her and she asks a question that is nothing to do with the conversation. Is this part and parcel of AD.

    I have a slight problem with the home which is very good really. They seem to be washing her knitwear on a hot wash and all mom's cardigans are shrinking. I am not sure how to approach this. My sister and I would be more than happy to wash mom's cardigans but I don't want to upset them. The thing is we can't keep buying woolies just because the home are shrinking them.

    Thanks for all your comments. Hope you are all okay

  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    When Jan was first in her care home I took all her washing home each day, washed it then brought it back. I could then wash everything as per its label.

    However the whole process became too much to manage, as she was getting through so many clothes each day, and I also had a full time job then, driving in total nearly 200 miles a day [home-office-care home-home] and many more if I had to drive to a customer office.

    So I asked the home to wash her things, as they do for everyone else.

    Yes, woollens do go in the hot wash, colours go in the hot wash, etc. It is a fact of life in care homes, it seems. So I simply buy her clothes now where it doesn't matter where they go, wash wise.

    I know it is nice for them to wear fancy things, but it is possible to buy fancy-ish things that are better suited to life in a care home. I have found that for Jan, British Home Stores tracksuit bottoms are the best, and Marks and Spencer Rugby Shirts. Staff asked me to get large T-shirt style nightwear since, as her arms are becoming more rigid, that is easier for them to put on her. They are scared of hurting her if she has more normal feminine nightwear.

    It is necessary just to go with the flow. At least I don't find other residents wearing her clothes these days, another common thing. Though I do find Jan wearing things I have never seen before!

    PS Jan's home is quite happy to let relatives take residents clothes home to wash. You simply need to double or treble up on things to make sure they don't run short.
  11. connie

    connie Registered User

    Mar 7, 2004
    Feel I can comment on this point. Although Lionel is still at home, we have had several respite stays over the past four years. Yes everything gets washed (regardless of care labels).
    With regard to Brucie's comments about larger sizes, I have found that I need to use larger sizes than normal, as Lionel's arms and legs no longer respond as normal (i.e. stiff & unresponsive) Stay calm, Connie
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    For a while it is very difficult, this business of clothing.

    Jan was the most elegant woman I have seen, and she wore lovely clothes, had fantastic dancer's posture, etc.

    To have to reduce her to tracksuits, T-shirt type nightdresses etc, which she would never have worn, seemed strange at first, but I had simply to get my mind around what is important. Jan is the important thing here. What she is wearing is important only so far as the clothing makes her comfortable and is manageable for the staff to dress her in, and is sensible for a blunt washing process. If it also looks nice, then that is a bonus, and actually Jan does look good in the new gear.

    I often think that there are times [mostly at first] when the focus of everything tends to be on our perceptions and our expectations of what is normal, our fears of what people may think, etc. The focus need to change to be centred on the person for whom we are caring. That's what counts.
  13. purchase

    purchase Registered User

    Aug 31, 2005
    Dear Bruce

    Thanks for your advice about the washing and suitable clothes to wear. The thoughts about wearing other peoples clothes. Mom often has other peoples tops on and when I question her she says that she has had it for ages.

    They always look nice so what the heck.

    Love Jacky

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