Will my mother become incontinent?

Discussion in 'I care for a person with dementia' started by josephinewilson, Nov 21, 2015.

  1. josephinewilson

    josephinewilson Registered User

    May 19, 2015
    I've been reading up on this forum the trials of others caring for relatives who are incontient and it has prompted me to ask a question which has troubled me ever since my 85 year old mother was diagnosed with vascular dementia in July. Is it a definite that at some point become incontinent and I will have to deal with all that? At the moment she seems Ok. I don't know what stage her dementia is at - she still lives in sheltered accommodation and has a carer visit each day and I take her out every other day. She can dress herself and put meals in the microwave. She still recognises me (although I haven't dared ask if she knows I am her daughter - not sure I want to know the answer)

    The reason I am asking is because I am such a shy and easily embarrassed person and I think I'd die of horror if I took her out to a cafe and she wet herself all over the floor. (Years ago my dad, now deceased, had a 'funny turn' in a cafe where we all were. I was so humiliated by it that I actually fainted myself - pathetic I know!!! Of course my mum, still totally in control then, sorted it all out while I was taken outside by a staff member to take some deep breaths and get my head in order.) So now - the former feeble one (me) could end up having to be the strong one; situation reversed.
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    You are doing a great job and I'm sure your Mum really really values all the time you spend together. I don't know if everyone becomes incontinent. I knew that my Ma was having trouble because stale urine smells. I'm not good with personal care and so we got straight onto the continence service and they provided pads in the NHS then my miraculous carer did the pads every morning for my mum and showed me how to help her in a non-intimate way in the evening and we worked it out between us just fine. If I couldn't have found a way to do it without it embarrassing me then i would have had the carer come in at night too. So I don't think you are being daft - or maybe i think we both are lol. Anyway there are always ways around things and this is the right place to come to ask the questions. My mum only urinary incontinence and she was nearly 92 when she died (and that was only for the last 2 years) but everyone is so different that there is no 'norm'.
  3. Leswi

    Leswi Registered User

    Jul 13, 2014
    I don't think incontinence is guaranteed, everybody is different. From my experience with mum she had a gradual progression of disease and continence came and went from time to time when she had TIAs in particular. Now mum is continent in the day but needs pads at night. Unless your mum has an episode that affects her health such as stroke or TIA I would think it unlikely she would suddenly wake up incontinent one day, you would be able to prepare with pads etc when the time came and have warning signs.
  4. balloo

    balloo Registered User

    Sep 21, 2013
    from what I have read about VD most do become incontinent .My MIL is 3 years after diagnosis but we could see a problem 3 years before this .9 months ago she had a series UTI and ended up in hospital for3 days .I stayed with her as she could not call for help with the buzzer . since then she has gone done hill. first thing she did was fill her waste paper basket with Poo and use one of her towels to try and clean her self.SInce this she wears pull ups , I have to take her to bathroom and I have to clean her up as how every many times I explain how to dry her self after weeing she does not understand. every 2-3 nights she fills her pull ups and takes them off and uses my towels to clean her self. I have solved that one removed all towels and the wash basket. SO every morning this happens I have to clean e her up. Sorry to say but you going to have to sort your self as it most certainly will happen.
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    Well i'm sorry to dispute this but it never happened with my Ma xxx I'm happy to say xx
  6. Beate

    Beate Registered User

    May 21, 2014
    My OH is incontinent. It started after he was described Donepezil, but whether that caused it or it was coincidence, I couldn't say. I wouldn't say I have become used to it, but I have learned to live with it. Incontinence pads from the Continence Service help a lot, plus I have waterproofed his mattress cover and bought Kylie sheets. I also have one on the sofa at all times plus a few seat covers that I could take out with me (in reality I mostly forget).

    Take her to the toilet a lot, always have a spare pad on you and buy a RADAR key for disabled toilets. They are ridiculously cheap (under £2.50).

    I didn't think I would be able to do this either but it's amazing what we can learn, and now bowel incontinence doesn't faze me either anymore. And most people are incredibly understanding.
  7. Grandma Joan

    Grandma Joan Registered User

    Mar 29, 2013
    Nightime incontinence

    My MIL has been on Donezepil for 3 years now, in the last 6 months or so she has been rather tardy at getting out of bed in the morning - sometimes into the afternoon and we have noticed a wet bed & I think it's because she stays in bed too long then is absolutely bursting to go to the loo and can't hold it. We find a drip trail from bed to loo.

    Not surprisingly she forgets it's happened and on the one occasion I broached it she denied it happens. Difficult one for a proud lady so I currently leave a pad under her duvet with a note to wear it at night to keep herself and her bed dry.

    I don't think she wears it as 2/7 days a week we find a wet bed, but on the other hand I don't know where the pad goes so a bit of a mystery

    We have employed a carer to go in every morning 9-10 now which gets her out of bed and hopefully to the loo before she is bursting.

    We also use a mattress protector.
  8. Lavender45

    Lavender45 Registered User

    Jun 7, 2015

    I've no experience of incontinence as yet, but I wanted to say you are not the only one who worries about coping. I know I should be able to grit my teeth and get on with it if and when it happens, but I can't truly imagine coping.

    Lavender45 x
  9. fizzie

    fizzie Registered User

    Jul 20, 2011
    i am seriously woosy and i managed so please be reassured, one day at a time xxx and it simply may not happen but if it does the continence service and nurses are fantastic
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    You just do it. If anybody told me the things I would end up doing for my husband, I simply wouldn't have believed it. But it has been done and you do it.
    You will find hidden reserves, I'm sure.
  11. Tubbsy

    Tubbsy Registered User

    Sep 5, 2010
    I know for certain if/ when my mum becomes incontinent I won't be able to deal with it and will get carers to do so, so don't feel bad about thinking you won't be able to.
  12. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    My husband has a potential life threatening illness. If his condition worsens I have no issue when it comes to his personal care at all and he would do the same for me.

    Mum 74 with AD has slight incontinence now as she holds on too long to go the toilet or ignores signs. I'm not sure which?
    I have finally persuaded her to use pads... When she remembers :rolleyes: otherwise she washes several pairs of undies a day and then hides them from Dad.
    I'm still looking for a pair she has lost :)
    However if her incontinence worsened or developed bowel incontinence I'm not sure how I would cope.
    Dad definitely wouldn't cope with it, despite himself having urinary incontinence a few years back with a prostate issue. Who had to wash his underwear and clothes?..........Mum.

    Both my parents are very private people. Even now Mum goes into a panic if Dad or anyone was to see her in a state of undress. :rolleyes:
  13. Louby65

    Louby65 Registered User

    Mar 26, 2014
    Hi Josephine . Welcome to the forum, where I am sure you will receive honest and experienced replies to your questions . My own mum has vascular dementia and has a degree of incontinence. She wears pads at all times and is regularly toileted during the day so incontinence is managed better . I am sure not everyone with dementia is incontinent but most are , im sorry to say . There is a scale called the global deterioration scale for dementia which makes grim reading but may give you an idea what to expect . Some people prefer not to know but others do. I understand your concerns about dealing with it but it's amazing what you can do when it comes to family . I have a sister who was horrified at dealing with this issue but I taught her how and she is much more relaxed about it all and looks after our mum very well. Best wishes . Lou
  14. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    I believe you when you say you would not be able to manage dealing with incontinence. I think you are very wise to be thinking about this now, the best advice I can give you is to get your mum's name down for a good care home, you may then refuse the bed when it crops up but ask for her name to be back on the waiting list and see if you can keep it rolling along like that.
    I don't think having carers in would help much as incontinence is not exactly predictable. You have no obligation to do this sort of thing for your mum.
    If someone told me that my mum would be covered in caterpillars, which would make me faint, I know I would not come round if it actually happened on regular basis, it is a phobia, you don't just get over it.
  15. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    My husband did so but my mother didn't.
    I guess it might depend on how long the sufferer lives with the illness.
    There are so many things we think we won't be able to cope with but it is surprising how resilient we do become when there is no alternative.

    I really don't think the caterpillar comparison is relevant. I can appreciate a phobia but Josephine has spoken of embarrassment, not a phobia.
    Embarrassment can come hand in hand with dementia and not simply due to
    incontinence but however we feel, it isn't the fault of the sufferer and their lot is a million times worse than ours.
    I'd be shocked to hear of someone having to be placed in a care home simply because they became incontinent. This happens to many people and for other reasons than dementia.
    We often say here to take things one day at a time and I really think that would be best in this case too. Face it if and when it happens. Best of luck. :)
  16. Louby65

    Louby65 Registered User

    Mar 26, 2014
    I completely agree Saffie that a person should not simply go into a care home because they have incontinence . I can fully understand your embarrassment Josephine ,
    (which is not a phobia and should not be compared to it) so please do not think that I am saying 'you will get over it and just do it'. It's not like that , but please look at all options including some training if incontinence becomes an issue - and I so hope it doesn't . Please do not think that a care home is your only option . Best wishes . Lou
  17. Slugsta

    Slugsta Registered User

    It is never possible to accurately predict the rate of deterioration in someone with dementia. Possibly even more so with vascular dementia where the progression of the disease is 'stepwise' rather than gradual. Each time a cerebrovascular 'event' occurs the dementia worsens, to whatever degree, and then plateaus for a time until the next event. How bad someone becomes depends on exactly where in the brain the event happens, how extensive it is and how often they occur.

    Having said that, many PWD do become incontinent, even if only temporarily alongside something like a chest or urinary infection, so you are certainly wise to be considering this and looking for ways of coping with the situation if/when it does occur.
  18. elizabethsdaugh

    elizabethsdaugh Registered User

    May 2, 2015
    I think I should say up front that I'm sorry if what I say here causes offence.

    I've been reading this thread with interest. I know Josephine was not saying that she would have find a care home if her mum becomes incontinent, but the thread seems to have gone along care home lines a bit. Can I just say that there are phrases on many, many other threads which I think should be considered here. The ones most pertinent are:

    1) Line in the sand.
    2) The obligation to care belongs with the local authorities and not the relative.
    3) No one can be forced to care for someone else.

    I am not trying to say that Josephine will not deal with incontinence should it arise, but everyone has their limits (their line in the sand) and if incontinence is something any carer felt unable to deal with should they be judged with phrases like no one should be in care because of incontinence? I just don't think its helpful. I don't imagine for a minute that anyone would look at care homes if they didn't feel it was absolutely the best place for the PWD.
  19. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    #19 Saffie, Nov 22, 2015
    Last edited: Nov 22, 2015
    I don't think anybody has said that 'no one should be in a care because of incontinence'. What I said was that I would be shocked if incontinence was the reason for someone being placed in care home.
    If you read Josephone's post again, you will see that the suggestion of a care home was not made by her so in no way was she being judged and my comment had no connection to her post.
    Many people suffer from incontinence and many of these don't have dementia.
    Incontinence can be managed very well in the home so why would a care home be necessary just for that.

    Incidentally, the possibility of being embarrassed because someone who is incontinent has wet themselves on the floor is pretty remote with today's pads and pull-ups.

    Actually, it doesn't. Not morally and if you have capital, not financially either.
  20. Beate

    Beate Registered User

    May 21, 2014
    It's so difficult, isn't it. Some of us develop incredible strength to deal with things we thought might break us. Some of us thought we would be able to cope with anything, then something throws us and we just cannot cope with it. It doesn't matter what someone's line in the sand is. Incontinence isn't mine but we are all different and before someone suffers carers breakdown because of whatever it is they can't cope with, other solutions have to be found. I would not like to judge anyone on this, and I firmly believe in the statement that the only one with a duty of care is the state. Most of us have to be at breaking point before we even consider a care home but no social worker has the right to bully anyone into caring or continuing to care by talking about moral duty. None of us takes this decision lightly but the obligation to step in lies with the state, and that is a fact. None of us should have to feel guilty if for whatever reason we just can't do it anymore.

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