1. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    6.05am, Mum half on and half off the wet bed, naked but for an open wet dressing gowm. Pillow on small table (lamp and tissues on floor).
    Walking frame draped with wet nighty, wet vest on radiater, wads of wet tissues all over floor. Wet mats at side of bed,
    Wet kylie sheet and wet duvet and cover pushed to bottom of bed, wet socks and wet pad ( nappy ones) in commode.

    She greets me with 'I've done the washing and ironing' or 'I don't know where all this water comes from' or the best one 'I've been swimming'.

    This is just to set the scene and it's been a similar setting EVERYDAY for the past 10 weeks. Nine out of ten times I keep calm but I am only human and feel really awful when I have raised my voice to Mum, I know it's the AZ and I know she can't help it and doesn't do it on purpose.
    I just get her, the bed and the room sorted, settle her down, put some nice music on for her, then take her breakfast at 8am as if nothing has taken place.
    I only got a tumble dryer 4 weeks ago, so life is much easier now.

    Mum is on QUETIAPINE 25mg, I give that to her about 9pm just before I take her to bed, she has been on them for about 5 weeks.

    I am assuming, that as long as Mum can get out of bed and is living in HER OWN VIRTUAL WORLD these scenes of disarray will carry on.

    Sorry if this sounds like a moan,well IT IS, but in the nicest possible way.
    Take Care ALL
    Love Janetruth X
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Janet,

    First of all, much sympathy. I know how hard it is to cope with this every morning.

    The question is, is it water, or is it urine?

    The quetiapine will make your mum sleep heavily, and she may not wake to go to the loo. Also, John has the problem that his kidneys do not shut down at night as most people's do, so he produces copious amounts of urine, and the bed is swimming unless he's changed every couple of hours.

    If you think this may be the problem, it's worth talking to the GP and continence nurse. There are various treatments available, though I have to say none if them were very successful with John.

    Or perhaps your mum is simply trying to wash her clothes and bedding, possibly after an accident? Or she's just trying to 'help'? If this is the case, I don't suppose there's much you can do, but if you think there might be a urinary problem, I'd definitely see if there is any help available.

    Good luck.

    Love,
     
  3. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Hi Hazel,
    Thanks for your reply.

    Yes, it is urine, she has no access to water and the incontinence Nurse can not be of more help.
    Mum has enough fluids so as not to become dehydrated, her last drink is at 6pm and I take her to the toilet regularly throughout the day.

    Mum has lost ALL sense of time,rarely knows who I am or where she is and has lost all conversational skills.

    She is often found on the floor in the morning (naked) in a pool of her own urine and greets me with ' I have been having a good time' or 'People have been coming to see me'.

    Mum is not living in rhe 'here and now' and seems content to be in her own virtual world.

    I hope you are keeping well Hazel.
    Take care
    Love janetruth x
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Oh dear Janet, I know the problem well. It's a nightmare, and the laundry never-ending. Much sympathy.

    I'm OK, John is now in an EMI home, so I don't have the laundry to cope with, just the depression that he's not here with me. There really aren't any solutions, just different problems.

    Love,
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #5 Margarita, Dec 28, 2007
    Last edited: Dec 28, 2007
    My mother seems to only take her pads of on thursday . always comes back without them on from day centre .
    she gets into her head that worker they , who she like will know she's wearing them .

    My mother knows who I am , but has lost all time , day week.

    My mother had a stage she would take of her pads all the time during the day, be wetting herself all the time . now she OK with them .

    but she still wants to get up, to go to the toilet at night time even thought nurse says for her to wear night pads to go to the toilet, for night time

    Do you think your mother getting up at night time using the bedroom floor as the toilet , thinking its the toilet if you get my point . does she not use the toilet at all any more ?

    Just wondering how long has she not use the toilet at all .
     
  6. nickyd

    nickyd Registered User

    Oct 20, 2007
    146
    warwickshire
    #6 nickyd, Dec 28, 2007
    Last edited: Dec 28, 2007
    Dear Janet,
    Sorry you're having a tough time. You are doing such a good job with you're Mum, don't you forget that. Dad used to have this problem alot with Mum, even with pads, kylies you name it all the protection you could get, sometimes nothing could stop it. Sorry no advice, but just wanted to let you know am thinking about you.
    Maybe it would be worth getting hold of the incontinence nurse and mentioning about using thicker pads to her, just a thought.
    Take Care as always, Love Nicky xxx
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,879
    Kent
    Dear Janet

    I can only offer you sympathy and admiration. I really don`t feel I could manage your situation and would be screaming for help from anyone.

    Love xx
     
  8. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Janet,
    When Peter was at home, he would urinate whereever he could any where in the house.
    Kept taking off pads, everything that was tried he took off.
    The washing yes it is worse than doing a weekly wash for a whole family.
    When Peter became doubly incontinent, it was hell. Thank God for Jenny our Carer. It is not an easy situation to deal with but keeping the house smelling fresh was a nightmare.
    On one occassion, I was down on all four scrubbing mess of carpet and Peter said "it wasn't me". Well I just lost it and said it b*****y well wasn't me. I could not take anymore, so I went to the Doctor's because I was so upset that I had lost it and it was not Peter's fault, this terrible illness.
    So I wish you all the best.
    Christine.
    p.s. your heading wet, wet, wet, it is pouring down here !!!!
     
  9. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Dear Jane,
    My sympathy and admiration too! Eric often stays up late because he can't "wee"-he drinks Ribena and marches round the house (he calls it marching!)In his RAF days he remembers being asked for a urine sample and couldn't give one-he says he was given a large glass of fruit juice to drink and told to march round the block-so he recreates that at 1 or 2 o'clock in the morning. He is terrified that if he doesn't manage to wee he'll wet the bed. In spite of my reassurances this is a regular occurrence.
    Your poor mum is obviously at a more advanced stage than Eric-wish I could offer some advice. It seems that your mum is dealing with what happens to her in her own way-to be commended-but not much help to you!
    I do wonder if the medication has a part to play in this?
    Love Gigi x
     
  10. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Thank you for ALL your tea and sympathy, it is very much appreciated.

    I brought up 4 children, had a twin tub washing machine,coal fire and worked full time, but NOTHING compares to looking after my 82 year old Mum, in this stage of AZ.

    An old saying 'ALWAYS a pleasure, NEVER a chore' keeps popping up in my head.
    I am worn out, physically and mentally, the sleepless nights,early mornings and emotional stress, have finaly ground me down, maybe if I was 25 instead of 55, who knows.

    The PLEASURE has now become a CHORE, my grown up children and my 2 grandchildren, tell me it is time to let her go into a NH.

    The CPN came on 10th December and has assessed Mum as needing Nursing care.

    I try to justify my actions and it is up to me, as I have to think what is best for my family.

    I come on to TP most days, when I get the time and though I do not post alot, I just want you all to know how invaluable this forum has been for me and has kept me going through all the bad times.

    I wish you all a VERY happy new year and plenty of tea and sympathy.

    Thanks again
    Take Care
    Love Janetruth x
     
  11. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia


    Dear Janetruth,

    I hesitated to say it until I read this post of your's, but, yes, I too think the time has come for a nursing home. I think you need to give yourself permission to do it. You have done a wonderful job over a long period, but now your health and well being are on the line too.

    Mum has lost ALL sense of time,rarely knows who I am or where she is and has lost all conversational skills.

    She is often found on the floor in the morning (naked) in a pool of her own urine and greets me with ' I have been having a good time' or 'People have been coming to see me'.

    Mum is not living in rhe 'here and now' and seems content to be in her own virtual world.


    I suspect that she would not be very distressed by the move because she no longer really knows you or what is happening. It will be emotionally wrenching for you, but you may well find that you are able to enjoy her more when the daily grind is not your's alone to cope with.

    Please give serious thought to doing this - not just for your own sake, but for her's too. If you keep going as you are, you may end up getting really ill, and she will have to be moved without you having a say in where she goes. This would be awful for you both - better to choose the time and place than having it forced on you through circumstances.

    Such a hard decision - you have my very best wishes in all of this.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,879
    Kent
    Dear Janet,

    Like Nell I too wanted to suggest the time has come for a nursing home, but felt it wasn`t my place to do so.

    I remember when you first started posting. You were so full of love and enthusiasm for having your mother with you and caring for her. Gradually I have seen how you have been worn down by trying valiantly to keep your promises to your mother and to yourself.

    What you are facing now, is too much for one person. In a care home, the staff work their set hours then have a break. When do you have a break? You don`t need to answer I know the answer without you saying.

    Listen to the advice of your family. They are justifiably worried about you.

    LOve xx
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Janet

    I can't agree more with Nell. If you are feeling as bad as that, and no-one can blame you, the time has come to start looking for a care home. You really mustn't allow yourself to become ill, and that will happen if you try to carry on.

    John is now in care, and though it is hard to bear, coming away and leaving him, I know that I couldn't look after him the way he is being looked after now.

    There comes a time for most of us when we have to accept that we have reached our limit, and it sounds as if you are there.

    Why not start looking around and see if you can find somewhere you like? That way, you're doing something positive, and the thought was at the back of your mind gradually comes to the front. You may find that a home you like has no vacancies, so you could put your name on the waiting list of one or two. There's no commitment, if they offer you a place, you can say you're not ready yet.

    Please think about it. It's going to happen eventually, so why wait until your health has completely broken down?

    Love and hugs,
     
  14. cariad

    cariad Registered User

    Sep 29, 2007
    89
    Hi Janetruth, I personally think that the time has come for you to consider a nursing home. It will probably be the hardest decision of your life. But you have to think of yourself and your family to. Also think of your Mum. You can spend hours visiting her and purely enjoying her, rather than constantly, cleaning up after her. You have already done more than many daughters would do. You deserve a rest and you will be better armed to continue caring for your mum (over seeing her care), if you are at least physically rested.
    The other option is to consider respite care. You could view it as a dry run if that makes sense.
    Love cariad
     
  15. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Dear Janetruth,
    I tried to keep my Mum living in her own home as long as possible, but when she began having falls and hallucinations, so that she became frightened of being on her own, she actually asked us to find a Care Home for her. She was happy there for several months, as it was family run and also in her own village, so she could still continue going to her Day Centre and her local Church. The staff were very kind and she was much better having a regular routine, so she didn't get so confused about time.

    Mum then fell and broke her hip, which eventually meant she had to go into a Nursing Home and it took her several months to settle down properly. She liked the staff and also made a friend. Although Mum could still hold a sensible conversation, there were times when she was in a completely different time zone and had no idea who I was.

    I know I couldn't have cared for her myself or had the patience the nursing staff had and they all seemed to be very well trained, as even the cleaners would sit and chat to Mum if she seemed distressed. Mum also enjoyed the meals in the Care and Nursing Homes.

    There is a lot of negative publicity about Care and Nursing Homes, but there are also plenty of very good homes with caring staff. I hope you are able to find somewhere suitable for your Mum. Personal recommendation is often the best way to find good care. It seems a huge step to take , but may be the best way to care for a confused person who needs constant attention.

    Kayla
     
  16. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Dear Sylvia.

    Yes, I was full of love,energy and naivety.

    As I mentioned before, I could have read EVERYTHING that has ever been written about caring for a loved one with AZ, it would still have not prepared us for what was to come.

    I am still full of love and naivety, but my energy and emotions are running low.

    I want to thank you ALL for confirming my decision to let Mum end her days in a Nursing Home, where, as some of you have said, I will get the PLEASURE of regular visiting.

    I wish you ALL 'A HAPPY NEW YEAR' and MANY THANKS.

    Take care
    Love janetruth x
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,879
    Kent
    Dear Janet,

    I`m sure you have made the right decision. I hope it doesn`t take you too long to regain your health.

    Love xx
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Good luck, Janet.

    I hope you find a nice home for your mum, where she will be cared for and content, and you will be happy to spend time with her.

    Good homes do exist, just take your time to find the right one.

    You have given your mum so much, time for you to take care of yourself now.

    Love,
     
  19. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Dear Janet,

    Just to echo what everyone else has said, there really does come a time when you have to hand over to the professionals.

    I've read this thread right from the beginning and know how you felt. My Mum is currently in the psychiatric unit of the hospital as the care home couldn't cope with her violence. Because of this I have to do her washing for her and it is so distressing. The hospital tried to get her to use a commode but she doesn't understand what a lot of things are for these days, and thought it was the washing machine and put all her soiled clothes into it, which I then had to take home and wash. Oh joy. She seems to be wearing pads more happily now so I'am spared most of this and the time will come when she goes back to a home so her washing will be done for her.

    I do hope you find somewhere nice for your Mum. My Dad has settled very well into the home I chose for him and Mum, so I know at least one of them is relatively happy.
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I also wish that for you both xx

    I also agree with that
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.