Carers helping to use Commode

[Jan66]

My husband was diagnosed with MND just over a year ago and I have continued to work full time doing some days from home. We have reached the point where we need social services to help by providing carers on the days I have to go into the office. We have been told by the social worker that visits have to be a set time slot. My husband uses a commode chair for bowel movements and in the future he will need help with it. The social worker couldn't answer my question about what we are supposed to do if he doesn't 'perform' within the allocated time slot and said that they can't just have people 'hanging around waiting'. I find it surprising that nobody else had asked her this question and wondered if anybody else has had this problem and how they got around it?

[Ellie]

Jan66 A warm welcome to the forum, Jan.

I'm guessing your husband isn't regular enough as to have one of the carer visits coincide with a likely performance?

Do you know how many times the carers will come and for how long?

I am totally reliant on carers during the day and have a routine which suits me - well, 99.99% of the time it does... xx

[Ken]

I asked this same question and got the answer "disposable adult underwear". Not a great thought.

I'm fortunate in that we're both retired so I make sure I'm around but the result is that our lives revolve around her bowels.

Morphine and other drugs cause constipation and laxatives make things very unpredictable.

[SAMMY88]

I was a carer for many years. I would ask the patient what normally triggers your bowels. Is it after the first cup of tea/ coffee in the morning . After a meal and so on.

After becoming familiar with your carers , patterns normally quickly form.

An experience carer should be able to deal with these issues and make the person feel totally at ease.

[Jan66]

Thank you all for taking the time to reply. Bowel movements generally occur sometime between 9 and 11 in the morning. The care package has yet to be finalised and we haven’t been allocated a care agency yet but I’m hoping for a visit around 7:30-8:00am to take pressure off me when I’m getting ready for work and then driving an hour to get there, then a lunchtime visit as well, so I guess I’ll have to hope that we’ll be able to have someone most of the morning to allow for using the commode as well unless we can find a way to make things happen to coincide with the early visit.

[TinyLady]

Jan66 my carer comes from 8am until 2pm each week day because otherwise I'm on my own (hubby at work and daughter at school) and unable to do anything. I suppose it depends what hours they are willing to provide.

I hope you get something that works for you both x

[fjay]

My husband was diagnosed with MND just over a year ago and I have continued to work full time doing some days from home. We have reached the point where we need social services to help by providing carers on the days I have to go into the office. We have been told by the social worker that visits have to be a set time slot. My husband uses a commode chair for bowel movements and in the future he will need help with it. The social worker couldn't answer my question about what we are supposed to do if he doesn't 'perform' within the allocated time slot and said that they can't just have people 'hanging around waiting'. I find it surprising that nobody else had asked her this question and wondered if anybody else has had this problem and how they got around it?

It's a really difficult situation.

Really an all-day or live-in carer would be best. However, this might be unlikely to be funded through social care (perhaps others have succeeding in getting this?). With NHS Continuing Healthcare Funding it could perhaps be possible.

It has health implications - if someone doesn't "perform" within their allocated slot, waiting until the next slot can lead to constipation. And of course trying to use a commode without help could lead to falls.

[KimB]

I've had to use stool softeners and magnesium to make myself "go" first thing in the morning. Otherwise, I get constipated (from meds and not much activity.)

I hope you can get it resolved.

[Aadam]

Jan66 NHS continuing care should be able to provide the hours needed, I would request the full 7.30 - 11.30 plus anything additional you may need throughout the day as it then helps with the stress of thinking no one may be around when needed for your husband and yourself. This works best for my Dad plus we have an hour mid afternoon and night time.

You may need to request funding through the palliative care team as this is the only route which prompted any action for us and until then we were self funding for over 6 months.

Also a urinal bottle may be of help for the short trips/night time as it saves a lot of transfers if its something your husband would want to consider.

Hope it works out.