What else can I do......

[Jaxx23]

My mum is 82yrs and been diagnosed for the past 2 years, although now looking back symptoms were in place before that. I have been a lurker on this site since diagnoses, but have now hit a brick wall. I am the youngest (44) of seven children and basically care has been left to me and one other brother. I have given up asking for help from my family as they all seem more than happy to watch me giving up all my time to do the job!
Anyhow, mum has a carer in for an hour in the morning and goes to day centre 4 days a week, so not too much to do as such..but its tough. She is now going to bed at, well anything from 5.00pm to 6pm, which as I work I cant keep an eye on her all the time, and the other thing, is her toileting, today I had a massive 'clean up' after mums attempt of clean up in my lunch break (she at home on Wednesdays). I just don't know what step to take next, another carer in at tea time? I feel guilty if she is having these accidents at day centre. At least the positive is that she manages to get to the bathroom. I do wonder if its down to the Donezipel tablets? D we take her off them now, has anyone had any experiences of this? Any help/advice will be gratefully received, sorry for the long post...today Im feeling at the end of my tether

 

[Beate]

Please don't stop any medication without having spoken to a doctor first. I wouldn't think that Donepezil has much to do with toileting problems. It's the Day Centre's job to look after your Mum while she is in their care and believe me, they've seen it all before so there is no need to feel guilty. But speak to her GP as he can refer you to the Continence Service.

If you feel that she should receive more care (ie. maybe Day Centre on Wednesdays too and/or sitters after Day Care so you can be at work without feeling stressed) then please contact Social Services and ask for another assessment for her and yourself as her carer. There is nothing you can do about your family but you have to make sure that it isn't getting too much for yourself. If SS aren't willing to provide more help, you can always threaten to walk away completely, at which point they would have to take over. They will try to avoid that, believe me!

 

[LYN T]

I'm so sorry to hear about your Mum-it must be difficult for you trying to juggle work and being a carer.

Personally I wouldn't stop any medication without talking to her GP/Consultant. I haven't any experience with the meds that you mention but hopefully others will come along soon to give you their suggestions/experiences

Take care

Lyn T

 

[Nebiroth]

You mustn't stop a medication suddenly without consulting a doctor first.

How long has your mum been taking this medication? Diarrhea is a known and relatively common side-effect, but it almost always appears within a few days of starting, and often settles down once the body adjusts to it. This is the reason they start at a half dose of 5mg for a month, becaus ei tmakes side-effects less likely and means they are likely to be less severe if they do crop up.

If your mum has just started taking the medication, then it might be the culrprit. If she has been taking it for some some and this problem has just started, it's not likely to be, though still possible.

In any case, any persistent change in bowel habits, espescially towards more frequent and/or looser stools, must be reported to a doctor - espescially if the person is over 60. This is to eliminate possible serious conditions as a cause (as with most such things, the risk increases with age, espescially past 60). It could also be something like a lactose intolerance, which anyone can develop at any age.

Other than this, then it may simply be a progression of the dementia and the start of incontinence. This is because the person feel sthe urge but does not know what it means, or forgets how to find the loo, or does not know what to do when they get there. It seems almost impossible that this could happen but sadly it is one of the expected symptoms of dementia )though some never become incontinent)

If it is incontinence then you can ask to be referred to the incontinence nurse.

 

[Jaxx23]

Thank you, I would never stop with consulting her GP, although I dint have a lot of faith in GO's and their understanding of Alzheimer's. she has been on the meds for nearly two years, it doesn't happen everyday, and she always gets to the bathroom ....it seems to happen every now and then for a short while, I have been to the doctors before about it, they did a internal and thought nothing of it!!
I forgot to mention that we are self funding so until we spend more I doubt we will get any help/support at all from SS.
It seems I will have to have a chat with the GP and see where we go from here....
Maybe I should get another carer to pop in at tea time, make sure she eats and doesn't go to bed too early
Sorry just having a sad day

 

[Beate]

It always surprises me that councils act so differently. When I asked for help from SS, no financial assessment was ever done, it was a case of need and I got assessments and Day Care plus sitting service without ever having to pay more than a tiny amount of lunch money. Only when I asked for respite was a financial assessment done, as care homes cost a lot of money.
Nevertheless, I would have thought that everyone has the right a carers assessment regardless of who is paying for what? How did you get the 4 days Day Centre - are you paying for it privately?
Even though, charities like Age UK etc. can provide a certain amount of sitting service per week so I would contact them.

 

[Pepper&Spice]

Hi,
Please don't feel down it's so hard to deal with these things I know. Haven't quite had your experience yet but often have a wet bedroom floor & that's with mum wearing pull-ups (basically incontinence pants but nicer more like padded knickers but disposable) Try your local Bladder & incontinence clinic they may be able to help. I also work all day and have carers in so yes maybe upping the care might be an idea even if it just helps with the workload. We also self fund and I know it's hard cos there's a general expectation that you Will manage not if you can. Have you had a carers assessment - they can help you look at your needs and what could be done to make your life a little easier. Take care you are not alone

 

[Jaxx23]

Hi there, yes we pay for Mums Day Care. We haven't had an assessment because I didn't think it would be worth our while as we self fund?? Im going to ask our carer (paid privately) if she can come in in the evenings, hopefully stop Mum going to bed at 5pm...I know I do worry a lot, but she lives alone, so far no worries on that front, but Im fully aware we are on the decline, which breaks my heart, as well as watching Mum, I also feel dreadfully let down by my family, but I must not dwell on that, I cant change it. I will do everything to make my Mum happy and safe, even if I have to get others in to do that, as Im now feeling that Im not living my life and my mum in her former life, pre Alzheimers, would hate for me to do that, so im going to take some of it back, and spend more time with my partner and stepson (when he's there) as at the moment I spend Saturdays with Mum and on Sundays that guilt creeps in, and I have to just drive over and pop in to see that she has eaten etc...... Thank you all for you support, I will be posting more regularly as I can keep bottling these feelings up, and you too are going through it all, and understand. Thank you

 

[CeliaW]

Even if your Mum is self funding, YOU are entitled to a carer's assessment which may bring up some new ideas of how to help - irrespective of if you fund them or the LA. And always worth being on their radar in case anything changes, both for you and your Mum. Take care x

Sent from my SM-T310 using Talking Point mobile app

 

[Wildlife]

Please don't stop any medication without having spoken to a doctor first. I wouldn't think that Donepezil has much to do with toileting problems. It's the Day Centre's job to look after your Mum while she is in their care and believe me, they've seen it all before so there is no need to feel guilty. But speak to her GP as he can refer you to the Continence Service.

If you feel that she should receive more care (ie. maybe Day Centre on Wednesdays too and/or sitters after Day Care so you can be at work without feeling stressed) then please contact Social Services and ask for another assessment for her and yourself as her carer. There is nothing you can do about your family but you have to make sure that it isn't getting too much for yourself. If SS aren't willing to provide more help, you can always threaten to walk away completely, at which point they would have to take over. They will try to avoid that, believe me!

Just to add that you can refer her to the Continence Service yourself - you don't have to go through the GP (I don't know if this means she will get seen sooner or not)