desperate new member- need help re incontinence

Discussion in 'ARCHIVE FORUM: Support discussions' started by jim's daughter, Jan 10, 2005.

  1. jim's daughter

    jim's daughter Registered User

    Jan 10, 2005
    2
    lancs
    i have logged on in desperation for the first time being inspired by some of the exchanges and support given by many on this site. my father who has AD is being looked after at home by my mother. After an awful xmas where he deteriorated and came in and out of hospital following a chest infection and urinary tract infection, my mum is struggling to cope with his incontinence and wakefulness at night. He is wetting a number of times at night and sometimes during the day but is not bothered by this. He is very sleepy during the day- awake many times during the night. he talks little, now stoops greatly and seems so fragile and has fallen a couple of times. We don't know how to manage this- is he now at an advanced stage?/ should she have him take sleeping tablets/ etc etc help help!
    there must be lots of you who can give us some advice.
    Anything would be very welcome.
    Mum is very tired/ emotionally exhausted and at her wits end.
    Dad goes to a great day centre a couple of times a week and mum now has a CPN to talk to but it's the nightly routine/ knowing where he's at which we don't know how to manage.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Yes, this is one of the awful times.

    Stooping/fragility/falling all can be features of the illness as it progresses.

    Incontinence is a problem I never had to face while Jan was at home, but at her care home they have recently tried a new form of pad that seems to make life much easier for her [and them]. Pads do become a necessity past a certain stage.

    Time shifting is another common problem - swapping night for day and sleeping when it is light, awake when it is dark. It may be that medication taken in the day has a sleepy effect on him?

    When was Jim's last full assessment? It seems to me that you should arrange another one. You should in any case seek help for both Mum and Dad - they both need it.

    I think you are at one of the crisis points in the progression of this - a place where something needs to be changed to enable all of you to carry on.

    Hopefully someone else will post something more practically useful!

    Best wishes
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Jim's daughter, hello and welcome to TP. Does your Dad wear a pad? If not, perhaps it is time to start thinking along those lines. The CPN or the incontinence nurse at your Dad's GP's should be able to help. This is a very difficult one as often the person does not want to wear a pad, but if you can get him to, it might save your poor Mum an awful lot of washing etc. If he is sleepy a lot during the day he may well have trouble sleeping at night. This will wear your Mum out quicker than anything. When your Dad is at day care she must rest up as much as she possibly can. We had this a lot with my Mum, it got bad enough to get Crossroads to do a night for us to give me a break, do you have a Crossroads near you? It might be worth talking about this to the CPN and GP too. Chest and urine infections can both also cause incontinence and make the dementia worse at least for a while. If he is more frail after a bout of these, hopefully now he is home and you can feed him up a bit things will improve. How old are your parents if you don't mind my asking? My Mum went to a day centre all five weekdays when things got really hard, is he well enough to do an extra day to help your Mum with the night wakefulness? With regard to sleeping tablets, the GP is the best one to advise you or does your Dad have a consultant? Either one could advise. It is vital your Mum does not wear herself down to a frazzle, she needs some proffessional help with these things so she can carry on helping your Dad. Do hope things soon get sorted a bit for you, love She. XX
     
  4. Chesca

    Chesca Guest

    Dear Jim's daughter, hello and welcome to TP, and forgive me if my welcome seems a little harsh in the reading....

    Fact is, you can't manage it on your own, unless you are a fully qualified professional with no emotional involvement. Brutal I know, but I suspect you didn't arrive here without being at the end of your tether and looking for some answers (none of us have them exactly, it's such an individual experience, isn't it?) or at the very least, support. There are people out there, in the System, who can help. That's what they are paid to do.

    Are you receiving any support? GP first point of call; consultant; social workers to provide some respite for Mum (against her best wishes) to keep an eye on Dad's progress? You don't mention this so hard to know what to say. So if you haven't...

    You, and primarily Mum and Dad, need some support so if you haven't already hit it, the System, hard and quick. The GP is the first port of call, social services for a chat to determine support and the other services available for respite, you will find this info from some of the contributers to this Forum, a lot of help depends on where you live!. The Alzheimer's Society has a variety of fact sheets and helpful advice and people on here have their own experiences to share. Use all of this, it can/will help.

    If you go to the top of this forum and, where there is a Search facility, type in the words Chest/water infection, you will be amazed to read how common this problem is and how debilitating this can be for anybody, never mind an AD sufferer. It batters the immune system and leaves the patient very weak. This infection, on top of a water infection, will be devastating to the immune system.

    You don't say whether Dad is on any drugs to treat the dementia, but I have a feeling that he isn't aware of his incontinence so of course he doesn't care. All social graces are out of the window with this awful illness and if you are drugged you won't have time to make the loo even if you are still aware of the need. Such is my experience, nursing my Mum.

    I have to tell you, for what my ten pence is worth, that Jim must have been a loving man in his time to have such a daughter looking after his and Mum's welfare. Just don't 'lose it' when you are met with the testing obstacles of 'everybody coping alright without anybody interfering' and other such objections. Have a word with social services and the GP in any case, GP first. It will get Dad into the 'System' when you really may decide you need them. They can provide all kind of practical stuff, advice on bedding for the incontinent, help with bathing, etc, day care to take away some of the stress. Gently does it.....

    .....and gently does it with yourself. People here are wonderful, helped me so much in the past. Never despair when you have this outlet for however you are feeling or whatever information you may need.

    Kindest of wishes
    Chesca
     
  5. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    #5 barraf, Jan 11, 2005
    Last edited: Jan 11, 2005
    Hello and welcome

    Your local Health trust will have a continence advisor. Ring the local branch of the Alzheimer's Society and they will give you the number.

    You are entitled to a home visit if you cannot get to the advisor's office.

    I have a similar problem with Margaret, who doesn't seem to know when she needs to go, or to notice when she has wet herself. She certainly sleeps through the night and wakes up wet through each morning.

    I cannot get her to wear pads during the day but have persuaded her to wear padded knickers. These are only meant for light incontinence but if I keep reminding her to visit the toilet we can sometimes get through the day without too much of a problem.
    I quite frequently have to change her knickers but it saves the rest of her clothes. I have purchased a waterproof protector for her chair which has been very helpful in saving the washing of upholstery.

    During the night I have got her some knickers with a waterproof gusset and managed to get her to wear a pad. I also use a disposable paper waterproof sheet. I also got a matress and a pillow protector. So each morning I just have her nightdress and knickers to wash, the pad and sheet are thrown away.

    There are some other pants that will take a bigger pad but I cannot get her to wear them as yet.

    We can't advertise on TP but I will send you a private message with the name of the supplier I use, then you can get a brochure and decide for yourself.

    Hope this is of some help.

    Cheers Barraf

    PS no I can't send a PM, as you don't appear to have a contact point as yet.
     
  6. jim's daughter

    jim's daughter Registered User

    Jan 10, 2005
    2
    lancs
    thank you all so much. The advice and support has been so helpful. I persuaded mum today to get an incontinence nurse to come and see her this week. She does have an excellent CPN but it's not my mum's 'way' to ask for help. She is a lot younger than he is- he's 81 - she's only 58 but now looks worn out. She's also managed to get him into the residential side of the day centre for respite- organised via her CPN- the latter has suggested 2 weeks which I have underlined she must take with no guilt!
    my feeling was that the incontinence is now something that will be with dad - I sense his AD has progressed to another stage. i think he will wear pads without complaint.
    Dad has an appointment with his consultant in a couple of months but I'm hoping the CPN will see him over the next couple of weeks and feedback a deterioration in his overall condition.
    Sheila- thank you for the tip on Crossroads- I haven't heard of them and will follow up with mum.
    we haven't involved social workers as we were a bit worried about intrusion/trust. The CPN seems to be the main person mum feels comfortable with.Mum has only has any input at all since the summer when dad was sectioned by the consultant due to aggressive behaviour and a hospital stay later- along came the support. The drugs he is on have totally addressed the aggression- better these problems now I think and possible side effects rather than the way he was previously turning.
    Chesca- thanks for the tip on the search facility.
    I work full time but am trying to give mum as much help as possible- she deserves it and has spent too long in her life putting others not herself first.
    I told her today about this site and am trying to encourage her to use it- and she is going to her first carers support group this thursday evening.
    a final question on the nighttime wakefulness- I've tried to do a lot of reading up on the internet about this- many suggestions are given eg trying to keep dad active during the day/ awake/ etc but with his frailty and constant falling asleep am not sure if we can achieve this. Do you think there's anything we can do to help this or should I just ensure mum gets lots of breaks and rest?
    take care everyone- and thanks again
     
  7. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Sear Jim's Daghter
    you mention intrusion and trust.
    You will find benifit by contacting Social services,being frank you do not know what you may need in the future and the sooner you are in the system the better.
    We have all worried about intrusion,also "keeping the situation inthe family"again don't do it ,don't try to cope alone enlist any aid that you can.
    All best wishes
    Norman
     
  8. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Jim's daughter, Norm is right (he usually is!) Getting SS involved and your Dad "in the system" ensures you will get back up ASAP. If you have to do it in a crisis situation, there may not be anyone to turn to for help, and then it takes time for the wheels to start turning from when you do. If you do it now, then you only take the help you need at the pace you want. But you can ask the social worker to fight your corner for all sorts of things I found. Yes, I understand about the privacy thing, but sadly the way the system works, they will ask financial questions, and they will ask for payment till savings reach a certain level. Till the law changes, (and were working on that!!) thats the way it is. I am so pleased your Mum is seeing the inco nurse, thats a good start. I was wondering, does your Mum get attendance allowance, it's about £50 and it does help. There is a fact sheet about it on TP. Tell your Mum to make the most of her break. She might find it a good idea to ask for what they call rolling respite, it's where you book up several in advance. Some days when Mum was really hard work, just knowing that in X amount of weeks or days I would get a little break gave me strength to cope. Love She. XX
     

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.