What to Wear & What to Do?

Discussion in 'ARCHIVE FORUM: Support discussions' started by PurplePoppy, Nov 19, 2005.

  1. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    My mum is increasingly wearing inapporpriate clothes. We can't get her to wear warmer things. She prefers to sit about in summer skirts and tops, and then complains that she is cold.

    She has a vast wardrobe and when she remembers where it is, I feel that when she opens it, it's all just too confusing for her. Would it be better to remove some of the clothes, leaving a smaller collection for her to pick from?

    If this is done, should she be asked, or should we just do it? I know there is at least 50% of her clothes that she hasn't worn for about five years, so that could all go to a charity shop.

    Also on a different matter, just what do you find to talk about or do with someone with this disease. My mum can't read a book or magazine. She used to knit, but can't now. She can't play cards anymore either. When she does say something, more often than not it is rubbish and it is hard to know what to say to that. Also if you are lucky enough to have a decent conversation with her, she then seems to fixate on that subject and she goes over and over it.

    I would be most grateful for any advice. Thanks to all those who respond.
  2. Kriss

    Kriss Registered User

    May 20, 2004
    I'd be tempted to gradually "hide" some of the unseasonal outfits leaving less choice. Put them away in the attic or spare room for the next few months and then reverse then swop them over (gradually) next Spring.

    The conversations becoming fixated are probably because she feels able to cope with the chosen subject. Whether it makes sense to anyone else or whether she is just able to repeat the same content is not important, she just needs to feel she is contributing. We tend to repeat the same questions and same subjects on every visit to Aunt and she responds as though its the first time so seems happy. We are becoming experts at listening and nodding/smiling/laughing/oohing and aahing at what seem to be appropriate moments having not a clue what we are talking about!

  3. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    #3 Stimpfig, Nov 19, 2005
    Last edited: Nov 19, 2005
    Hi Purple Poppy

    I pretty much have the same problems with my mother which is a bit more complicated considering that she has been placed outside her own culture which translates into putting up with another kind of weather, another kind of attire and another kind of cuisine .

    Clothing has always been a problem, esp. when I take her out. She refuses to wear jackets, coats and overcoats at all times. I have gone to great lengths to find light but warm clothing for her but nothing seems to be appropriate. I must confess that when the going gets hard, I do resort to some mild scolding to get her to wear the right clothes in her own interest. There have been times when I place warm clothing of all kinds - cardigans, shawls, blankets etc. nearby (on the bed next to her, in the car when we go out, carry with me when we walk together) and then, when she is being very stubborn, I just let her feel the cold. That really seems to work for when she feels the biting cold, she's quite pliable and wears whatever is required. All this means a lot of patience and perseverance on the part of the carer - I am at it 24/7/365 . It's telling in my tone of voice so much so that my husband refers to me as the 'Station Commander' :)

    The other problem with my mum is that she just won't go to the toilet on her own. I have to keep track of and ensure her trips to the toilet. I am not sure if she is not sensing the urge anymore. It has become a cause for concern.

    I guess one has to keep trying different alternatives and use different kinds of tactics until one finds the one that works.

    My mum can still read but won't read / won't knit/ can't play cards anymore. I have devised a special card game - we just keep throwing a card each, whoever doesn't have anymore to throw is the loser. Usually, I ensure that she wins more often. I also give her easy jobs like peeling garlic, potatoes, some light chopping of veggies, wiping dishes etc. but everything has to be done under supervision and constant instructions.

    I don't expect to have a reasonable conversation with my mother anymore. She speaks a hotch potch of several languages and several subjects. I pick out some sentences and ask some simple questions to elicit a reasonable response and hopefully keep the brain stimulated. One just has to work at it in creative ways.
    As I posted somewhere else, my mum seems to have found her mate in her mirror image. She sits in front of the wardrobe all day chatting away to her 'friend' which has not only become her favourite pastime but also has given me, in an odd way, some respite.

    I hope my missive helps in some way.

    With best wishes,

    Sue Stimpfig
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi Poppy,I did similar to Kriss. I put the summer clothes away and left the winter ones out. I also replaced summer "unsuitables" before I put them out in the warmer weather and sent unsuitable still use-able stuff to a charity shop. I replaced things with easy care, easy wear as much as possible. Then did the same with the winter stuff in the summer.
    When my Mum couldn't physically do crosswords etc, I found she quite enjoyed helping me think of the answers to them. She was still pretty good on some subjects till nearly the end. Love She. XX
  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Hey Purple,

    All I can say is that you get better at it. The lack of things to do is overwhelming at first, its a bit like when the power goes out and you think, oh what can I do, I know I'll have a cup of tea...oh hang on I need electricity to boil a jug for that,...I'll wash the clothes, no I can't do that either, I'll just send some emails...no....ummm?

    Eventually though if the power continues to stay off you do start to get quite good at coping without it. Who would have thought I'd miss Dad being able to spend all day watching the cricket on TV?! I will say appreciate the monotonous conversations as much you can however as I know I spend many a day teary eyed listening to the other inmates at Dad's home talk nonsense while Dad and I sit there together me just holding his hand because he can't talk back and I'm not sure of how much he takes in and don't want to frustrate him too much by prattling on. I WISH he would talk nonsense to me, I even like it when he mumbles away at me on bright days. I do realise however how taxing it can be because I've had a few 'conversations' with the other inmates and you spend the whole time hoping they won't realise you have no idea what they are talking about, or trying to come up with answers that won't upset them in the reality they perceive.

    I have gotten very skilled at having a one person conversation, balancing it all carefully so that I don't exclude Dad's participation when he wants to show some signs of understanding or emotion. I used to avoid questions because that made life difficult for him being put on the spot, but then that also has the effect of not making him feel important if you just sit there and talk about yourself all day and then he got to a stage where the goings on in my life don't interest him at all...he's like a small child where he is his world and I think this is just a progression of the brain damage. He did not react at all when i told him I was getting married, nor that I was graduating from Uni soon, things that once upon a time would have been very important to him. So nowadays I tend to ask him questions but then carry the conversation on after the question if there is no response, like 'Hey Dad how are you today?...[give him a hug, squeeze his hand] Have you been walking around much or just sitting here with not much to do?...I hope you have been walking, its good for you you know,...I worry if you're not walking so much, I worry that your legs will not be so strong.....do you want to have some afternoon tea? I've got some biscuits....How about we go sit outside for that, its nice out there in the breeze, we'll go sit at our favourite spot, you know, where the chairs are....its such a lovely breeze out there, and we can look at the garden, watch the birds and stuff, how about we do that?' I visit him for an hour on most days, and so of course there are long silences but I use things like looking at the scenery, appreciating the weather, enjoying the breeze as an excuse for the silent times.

    Probably most of this is not much use to you because you are dealing with your Mum all day and she can talk, but thought I'd post it anyway for others who might be in a similar situation and in case your Mum's speaking begins to fail.

    On an up note, even though I told Dad about getting married months ago and didn't think it registered, the other day I asked him if he would mind if I came into the home in my wedding dress and we had some photos taken together, and you know...something in his eyes told me he was pleased, not just about the photos, but that he knew I was getting married and was happy for me. Won't I cause a stir walking into the home in my wedding dress!! Keith said the other day to me too, who's going to take the photos and I said 'You of course.' and he said but I'll be wearing my suit and will be in the photos too! How lovely! :) Hope Dad is having a good day that day, but it is quite possible he won't even register again...I'm starting to think though that he does 'register' in a way, or at least the information goes in, so I'll take heart from that thought. Should delight some of the little old ladies too. Give them all something to talk about for once.
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    Nat, please post photos of you in your finery, with your Dad, if possible.
    It would be lovely to put faces to the names.

    Best Wishes-
  7. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    Thanks to all who replied to my post.

    Nat, thanks for your words. I think that this disease is as much about the sufferer as those left behind. I know I'm still coming to terms with this horrid disease. Every time I see mum I try and be understanding and include her as much as possible.

    Good luck with your wedding. I'm sure your dad will be so thrilled to see you in your gown.
  8. Gwen

    Gwen Registered User

    Nov 15, 2005

    I went thr' this as well. At first I was reluctant to take away another of my mother's choices but it was best done. Now I change her wardrobe with the seasons and put her clothes out for her. This works reasonably well. When I buy new clothes, I think about how easy they are to put on (so that she can continue to do this for herself as long as posssible) and choose similar styles etc (as she finds new things confusing). To begin with she was aware that some of her clothes were 'missing' but soon accepted it, especially as they do get rotated.
  9. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    Thanks Gwen for your response to my post.

    At the moment mum is just about managing. Trouble is she'd soon want to know what I was doing in her wardrobe, and yet she often seems to forget she's even got one.
  10. blue sea

    blue sea Registered User

    Aug 24, 2005
    #10 blue sea, Nov 30, 2005
    Last edited: Nov 30, 2005
  11. jc141265

    jc141265 Registered User

    Sep 16, 2005

    Thanks bluesea,

    On your words about the photo album that sounds like a wonderful thing you both can share, I'm glad for you. Your other comments about how to talk to your Dad also struck a chord with me....

    One thing I did want to ask others on here though was with regards to photo albums and photos in general.....I have seen dementia sufferers and have heard others talk about using photos as a way to make conversation, to bring comfort, to remember good times past but I was wondering if anyone else was in the same boat as us, where Dad never had any interest in looking at photos at any stage of this disease? I was wondering if it was due to him being a younger dementia sufferer (i.e. photos always seem to be valued more the older you get) or also it may have been that for Dad, well he never really seemed to be interested in his past since getting this disease. We were told he would forget short term stuff, possibly forget us but would remember the past like it was yesterday, and yet this behaviour never ever emerged. There was never any enjoyment of the past for Dad, I used to bring things up from the past, thinking that based on the expected symptoms that he would enjoy this, but he always appeared disinterested in such things. This fact has also always been another source of frustration for us, because people always assumed that his disease was about forgetting and really for Dad there has been no forgetting, he has just lost abilities, abilities that he doesn't forget he had (I.e. I see him trying to do the motions) but abilities he can no longer perform (i.e. his hand misses the mark). I've seen it mentioned here that folks shouldn't worry too much about doing things that their loved one may not be too happy about (i.e. thinsg that needed to be done for the long run benefit of the dementia sufferer) as they will soon forget anyway....we've never had that relief...Dad remembers what we do/did and often finds a way to let us know he remembers!! :eek:

    Anyone else found that this was the case for them as well??
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi, yes my Mum was like that too. They diagnosed mixed dementia, vascular/alz. Is your Dad similar? My Mum, I think she had more vascular myself and that this type seems to allow for more memory windows than Alz. alone does, these can often be immensely hurtful to both sufferer and carer as the frustration is so great. I may of course be completely off track, but thats just my own observations. Love She. XX
  13. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    My mum doesn't seem able to see properly, although she has been checked by the Optician who says her sight is ok. She uses glasses, but they are the right prescription. I wonder whether it is just her brain not registering what her eyes are seeing. It's such a shame as dad took loads of photos in the past, so we'd have plenty to look at.

    This also causes a problem with things to do, as she says she can't see properly. I can't think of much she can do which doesn't involve sight.
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    This is what happened to my wife and I guess there could be at least three different things involved, maybe all:
    • her eyes can actually see and the signals are passed through but her brain can't interpret what she sees
    • the neural connections between her eyes and her brain are themselves compromised by her dementia, so although her brain tries to interpret the messages, it simply can't
    • her brain no longer sends the appropriate messages to focus her eyes, to move them appropriately, and therefore to register what she sees
    When Jan's sight was clearly going, we removed her spectacles - I had especially bought her varifocals because I thought that somewhere on the lenses she might find something that worked for her. That didn't work, and the optician then changed the lenses to ordinary ones, but since they didn't work either, we simply dispensed with them entirely.

    It is very distressing, especially when so many other faculties are hit anyway. "Can't they at least have their sight?" comes to mind. :mad:

    Final point: opticians are trained to deal with normal people in normal health. They don't understand people with dementia.

    Consultant eye people are just the same. When I had Jan registered blind, needing an official confirmation of that fact, at first the specialist asked Jan what she could see. Well, Jan can't even talk! So he then asked me, I told him what was wrong, he accepted that, and he registered her blind.
  15. EllieS

    EllieS Registered User

    Aug 23, 2005
    Morning Purple Poppy

    Dad also had problems with his sight. He had Parkinsons Disease and latterly Lewybody Disease.

    I went with him to the PD clinic where they did an eye test - I was there and was extremely interested to see how he did with the chart on the wall. I was absolutely amazed to hear him read as many letters as he did . Amazed, pleased but confused.

    When we went in to see the Doctor I did question this but it was not unusual apparently. I can't recollect the technical jargon. But it's to do with the route the messages from the eye takes to get to the right place in the brain to communicate what he was seeing.

    The problem was much much worse when Dad had an infection or just wasn't well - with him often aiming for food on the plate and completely missing - so frustrating for him. and I know it was one of the major reasons for him sitting with eyes closed, dozing most of the time - which in turn was not healthy for Mum - who was caring for him 24/7.

    Having said all of this, when he had a visitor (which wasn't as often as it should have been) he did very noticeably perk up and if I helped him to eat he did take over - and successfully too.

    So I think there definitely was a medical reason but that reason could be overcome when the interest was there!

    Does that make sense. Hope So

    Best wishes

  16. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    Thanks to all those who replied to my post. It does seem that the apparent loss of sight could well be due to the dementia. My dad explained to mums Optician about her dementia and he said there were ways of testing differently.

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