1. jeannette

    jeannette Registered User

    Feb 27, 2006
    55
    It's getting harder and harder to help my mother. We're very fortunate to have a kind and patient carer, but our mum won't let her care. A previously fastidious lady, she can't really see these days that her clothes are dirty and food-soiled - but she'll hardly ever let anyone help her with her dressing. Worse still, she refuses to let anyone take dirty underwear away or give her clean, with obvious results.

    More dangerously, if she goes out anywhere, she fights all attempts to take her arm, though I do insist - which she hates, tells me I'm cruel, etc. - but with the awful pavements, it's just an accident waiting to happen if I don't take her arm. She's mid-90s, with advanced AD, but she was always proud and pretty difficult, and now it's so hard. She's clearly depressed about not doing the things she used to, but the sad fact is that she really can't do them.

    I could go on and on - her refusal to take any medication, her obsession with phoning me - logging 30-40 calls a day! ... her world is shrinking, and I feel so sad and guilty about what she increasingly sees as her prison. But at least she's still at home, is cared for, has her things around her, her family nearby and in touch every day. Special occasions are now ruled out by the doc as they create hysteria and terrible over-reactions, awful for her and everyone - but I still feel so guilty about excluding her.
     
  2. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Jeanette,
    Please don't feel guilty. I excluded my Mom Saturday from a family get together for my cousins college graduation. She had thought about going but I knew ten minutes into it and she would be anxious and wanting to leave or needing to get to a bathroom. I could just visualize us in the middle isle having to get a whole row of people up so we could get out before an accident during the commencement speech! It would have happened too.
    In my mind I wanted so badly for her to be able to attend and enjoy it like she used to but I knew it was much kinder if she didn't go. So I just told her it would be long and boring ( which it was ) and she decided she didn't want to go. I then arranged for the whole family to come to my house along with my folks where they could have a visit in familiar surroundings. I am not sure she ever put together who everyone was, but she still enjoyed it and I felt it was the last time for this kind of get together.
    My Mom also has the same issues with clothes and cleanliness. It is hard to see and hard to know how to deal with it. Just when you've figured it out, they do something else! Do the best you can, keep her safe, fed and warm. Forget happy, if they are, it is a plus but not likely to last.
    Take care of yourself.
    Debbie
     
  3. jeannette

    jeannette Registered User

    Feb 27, 2006
    55
    Good and sane advice

    Hi Debbie,

    Only just worked out how to get to your reply.
    Thank you so much. It is good to share, and though I'm lucky in that I do have people to talk to about these things, communicating with "strangers" is sometimes very helpful and therapeutic.

    Your closing words about doing our best, keeping her safe, fed and warm - forget happy, are a good dose of wisdom and sanity. You are so absolutely right. Can't help wishing that a measure of happiness could come back into her life, but very sadly I don't think it ever will. Oh, with the small exception of when she sees my little dog - she makes her smile. The pleasure forgotten very swiftly, of course, but better than nothing.

    At least in your case, you more or less talked your mother into not going. I'm glad for you that you can do that. Any mention of special events would just put mine into a hysterical tail-spin - and I suppose it's all been so long, I seem to be a bit emotionally burned out these days.

    Anyway, enough. On with work etc. I wish you well, and thank you for responding.

    Jeannette
     
  4. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Jeanette,
    I'm glad I could help, we all need the cheering on from time to time ! I just got home from spending the night with Mom because my Dad had an overnight in the hospital. He is fine but Mom usually doesn't do too well when he is gone. Happy to report it wasn't too stressful this time. This morning we had one of those very rare moments of lucidity and had an actual conversation over coffee. I talked to her like I used to when we were best buddies. It just felt so right. Then, the cloud came back into her mind and her dimented self took over. Those times are just about nonexistent anymore so I will tuck this one away in my memory.
    I swear it would almost be better if they would just get one way and stay that way so we could get used to it. This yoyoing from bad, to worse, to no so bad about drives me nuts!
    Take care and I'm so glad we all have each other for support.
    Debbie
     
  5. jeannette

    jeannette Registered User

    Feb 27, 2006
    55
    Glad you had this morning

    I'm sorry your Dad was in hospital, but so glad for you that you had that short and precious time with your mother. I'm sure that those are the moments that will get tucked away, to be taken out and thought about long after all the dark and frustrating times have faded away.

    Sadly, though my mother appears to be quite lucid on the surface much of the time, the woman I used to have such wonderful times with (not always, by the way - a very selfish, controlling streak - and that's the part that's won through unfortunately..) but the other part was great, and has completely disappeared and will not now, I think, ever return.

    I do sometimes find myself thinking that it might be easier if she went into that next "docile" stage that I hear of. Easier for her and for us. It's a horrible journey, and so damned destructive. I never would have dreamed that I would feel as unable to truly help as I often do now - never thought it possible.

    How sick is your father? ARe you able to communicate with him? It must be so very hard for you to have both your parents ill.

    By the way, someone told me about some of your words of wisdom posted a while back - I took a look and found much of what you said so familiar and true - and helpful, too. You seem to have learned a great deal.

    Thank you for sharing. Once again, I wish you all the very best.

    Jeannnette
     
  6. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Thank you Jeanette, I'm glad if anything I have had to say was of help to anyone! I know that TP, the friends I've made here and the wonderful advice that I've been given are largely responsible for making this trial more tolerable!

    My Dad has osteoporosis and five fractured and compressed vertebrae. A skeletal/muscular radiologist in my town specializes in a new procedure where a catheter is inserted into the vertebrae, it is expanded and a bone cement injected. The end result is that the vertebrae is like new afterwards. Not only is my Dad now pain free ( and he just had this done yesterday) but he is actually taller ! It is like a miracle.

    Otherwise he isn't the picture of health but holding up ok. He is a life long smoker, a lung cancer survivor and has emphysema. I never thought he would outlive my Mom who has always been such a health nut. Now, I won't be surprised if he survives her. That is if caring for Mom 24/7 doesn't get him down. I try to take some of the burden off of him as much as I can.

    Take care and I hope all is well with you and your Mom.
    Debbie
     
  7. jeannette

    jeannette Registered User

    Feb 27, 2006
    55
    Amazing

    Great to hear that amazing news about your father - fantastic sounding new procedure, one worth knowing about. He's very lucky to have you to help with your mother.

    It's been a good day except that my little dog is sick, so tomorrow it's the vet first thing, then taking my mum to an appointment, etc etc. And maybe I'll get some work done too!

    All the very best again, and take care of yourself too.

    Jeannette
     
  8. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,149
    Toronto, Canada
    Jeannette,
    I always find it astonishing how fastidiousness can just disappear. My mother was a cleanliness & neatness freak when she was well. We've had a few phases of not bathing to the point I could literally smell her from 4 feet away. And me with my constantly clogged sinuses!!! Boy, she was ripe!!

    Getting her to take her meds is probably something for you to focus on. If she refuses, can the pills be crushed & put in custard or applesauce or something like that? Does she say why she refuses? You could say something like "The pills are for .....(whatever it is she may be worried about).

    As for the constant phone calls, my mother used to do that also. There will come a time when your mother will not be able to phone and you will actually miss the calls.

    Your mother may yet experience a positive change in her moods. Don't assume she'll be in this frame of mind forever. She may still experience happiness and joy. Right now, she's still too aware of her mental lapses. Yes, she probably is depressed, who wouldn't be? But there will come a time when things change. The one thing about this disease is that it has no regular course like other diseases. The symptoms, moods, phases, stages, obsessions vary wildly in timing and sort with every single person. There are common problems we experience, but it's not the chicken pox, with a clearly defined progression of symptoms. So don't give up, don't lose hope. You'll get through somehow. It's amazing how strong we can be when we haven't a choice.

    Joanne
     
  9. LindaD

    LindaD Registered User

    Nov 17, 2004
    30
    Suffolk
    Been through this

    The stage you mention was when we first started getting concerned about my mum although we knew her memory was getting bad. She was still living at home and caring for my stepdad who had had a stroke:

    They were wearing dirty clothes; the house stunk of urine (he is incontinent and carers were coming in to change him) - I discovered smelly sheets in the tumble dryer that either not been washed or without washing powder - no housework was beeing done (we discovered she had thrown the hoover away!) I always cleaned the loos before using them and the carers were worried about the hygiene of all this - in the end I started sneaking washing out and returning it later. She denied every bit of this and was really affronted when we it pointed out - she has never been dirty in her life etc!

    After stepfather had to go into home, I got numerous calls day and night to ask where he was and why she was on her own in the house. Amazingly when she had to follow him into the home, I missed those calls! Now she no longer remembers the phone number.

    We did try with care for her, which she denied she needed, to help with housework and shopping but she would accept the help, always said she could do her own shopping but she would forget and when we went over the cupboards were empty so we did it!

    She had to go into care in the end as we are not near and she broke her arm which brought things to a head as she obviously couldn't manage, that brought home to us the full extent of the problem. She managed to pull the first plaster off while it was still soft! She is still in denial now and doesn't like being in home although staff say she is much better when we are not around!
     
  10. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Linda and Joanne,
    I saw an ad yesterday for a doggy day care that has video cam so you can see your dog while your away on the computer. I think nursing homes should have them so we can watch our folks while they are in there. That way we would know how they are doing when we aren't watching and how the staff is taking care of them.
    My Mom is getting worse by the day aand won't be surprised if she doesn't have to go into one within the year. Just breaks my heart to think of it but in alot of ways our life will be easier to manage ( I think ). I guess time will tell. Meanwhile, we will just keep on, keeping on......as my mom used to say!
    Debbie
     
  11. Worried Woman

    Worried Woman Registered User

    Jan 7, 2006
    26
    Dorset
    I'm having trouble dealing with the no washing, no housework, dirty clothes issue with my mother. How do you persuade them to take a shower and change their clothes?

    This is all new to me and I have difficulty understanding how it is that they cannot SEE the dirt.

    My mother was also very puzzled and not at all happy when I removed all the rotting food from her fridge.

    She lives alone, thinks she is fine and the doctor says he can do nothing unless she visits the surgery.

    Is it also common for sufferers to believe that people are being nasty to them and giving them funny looks?

    I'm at a loss to know how to help her.
     
  12. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    It's called paranoia (just because you're paranoid doesn't mean they're NOT out to get you :D )

    As far as being at a loss is concerned, then join the club. :eek:

    My reply sounds very banal and is not meant that way. There are no definite answers - what suits one family will not suit another. You can only stumble along like the rest of us.

    Someone else may be able to give more definite answers. I just wanted to reply and let you now that you are not alone. Sorry that I can't be of more help.
     
  13. Áine

    Áine Registered User

    #13 Áine, May 13, 2006
    Last edited: May 13, 2006
    sounds interesting Debbie, but i'm not sure I'd want my dog on the computer while I'm away ..... I have enough trouble with the cat :D
     
  14. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    That all sounds pretty normal to me!!! That's the way it is and it will get worse!

    I think the problem is that for the sufferer it is so difficult just to get through the day or even the hour or sometimes the decision of which chair to sit on that other things go by the board...
    The sufferer cannot smell themselves, only want to use clothes they have some memory of and know how to get in to.
    Over the non use of toilet paper - my sister in law said 'but you should train her.. teach her to use the paper - like you do with a child' ... took a deep breath and responded with 'her short term memory is useless - she can't remember things that happened 20 minutes ago...

    I sort of think it is the happiness of the sufferer in the short term that is important. Sure I have a wonderful and patient care worker who comes in twice a week to try to give my wife a shower... She succeeds one time in three max - and walks away after an hour of very gentle persuasion.. I think she handles it well and one week in three Monique does not pong! Gives me pleasure - gives Monique none!

    We are not alone - and the files are all x rated for horridness!

    love

    Michael
     
  15. Worried Woman

    Worried Woman Registered User

    Jan 7, 2006
    26
    Dorset
    So is the paranoia thing normal?

    My mother comes up with stories about people being rude to her, giving her funny looks and snubbling her. Some of these are people I know and I wonder if I should ask them for their version of the encounter?

    I am going to visit my mother and stay with her this summer and am wondering how to get through it without walking out or her throwing me out!

    Help!
     
  16. Áine

    Áine Registered User

    I think it's pretty much usual. My dad is like that, and so are quite a few of the people in his nursing home. I think to some extent it's the result of frustrations about not understanding and not being able to make sense of what people are doing any longer.

    It's pretty unnerving at first, because of course at first you believe it. I couldn't make sense of why dad's neighbour (a lovely, helpful young man) was suddenly reportedly being unkind towards dad. Why was he telling me it was fine was dad to go round and ask for help if he was being very offhand and reluctant to help dad. Then he was telling me that his home carers were being sharp with him and unkind and interfering with his things.

    Yes, checking it out with the people you know and feel OK with might be a good idea. It feels quite a difficult thing to do but it's probably important. People who aren't being unkind and are understanding shouldn't have any difficulty discussing it.

    Hope the visit to your mum goes well. Perhaps not a bad idea to check out possiblities of bolt holes if it all gets a bit much.

    Áine
     
  17. Worried Woman

    Worried Woman Registered User

    Jan 7, 2006
    26
    Dorset
    Thanks. I think I will ring a couple of people tomorrow. Mum's next door neighbour (similar age) has been great and is her only friend. Mum tells me every time I speak to her that "Grace next door has found another friend" and that she hardly sees her anymore. In the next breath she was telling me how they went for a walk together! I will ring her tomorrow.

    Luckily I have a few places that I can escape to if Mum drives me mad when I visit. I need to learn a bit more patience and how to bite my tongue.

    I must also see how she is when driving the car (!) Luckily she does not go far, less than 300 miles in 4 months. I was able to check that on line as she has had 2 MOTs done this year (so far) despite the fact that I told her she had a valid MOT from January (lost the cert) she got another one done last week.

    The law should be changed, allowing people over 75 to self certify that they are fit to drive is just barmy. :eek:
     
  18. clare

    clare Registered User

    Oct 7, 2005
    31
    So is the paranoia thing normal?
     
  19. clare

    clare Registered User

    Oct 7, 2005
    31
    Dear Worried Woman

    there is no normal with this illness,but paranoia does seem to be fairly commom.

    My mum suffers and has done so for serveral years. she accuses us of plotting against her, and when we were trying to get medical help, she denied every symtom and accused us of lying. she also thinks we steal her money, and she is sure my father is having affairs.

    CLARE
     
  20. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Paranoia goes with the territory as well.. My wife recons I have stolen all her money, and her fathers money - She is concerned that others steal from her.....

    I asked on this forum about drugs against paranoia and it appears they come at a price - the sufferer becomes even more dormant and looses some speech ability (probably different in every individual case) Out of interest I got so concerned about the paranoia - screaming - shouting abuse as well as kicking me out of bed at 06.00 that I took her to the Dr's - few days ago.. Her new neurologist, on the last visit a few weeks ago had changed her tranquilizier from Tiapridal to another which he preferred...
    She was very calm and undemanding for a while then major paranoia - the GP changed her back to a larger dose of Tiapridal and cut out the other.. Last couple of days it has been better but.............. could all be coincidence...

    Michael
     

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