Sensitive Topic

Hi, very sensitive topic hence why going anonymous …

I care for my wife full time - she has SP and is quite poorly. She now only has movement and control of her head and mostly in one arm. As such I do pretty much everything for her (she can usually feed herself but I often have to help out too). She has a SPC that I have to empty frequently and this isn’t too bad. Until recently I showered her but recently we have engaged a care company 3 times a week to help with this.

What has recently happened though and causing us some distress is bowel issues. Over the past few months she can no longer look after herself after going to the loo (I have to hoist on and off the loo). Some days I have to take her multiple times a days, and urgency is certainly an issue we have to deal with.

I hate having to do the cleaning up and she hates me doing it. We have spoken to the district nurse for options and all she has offered so far is pads; but that doesn’t really change the ‘cleaning up’ that I will have to do.

We always said that I would do most things for her but this was always a red line we wouldn’t want to cross as it removes the final part of our relationship. I no longer feel like a husband.

Are there any solutions for us (colostomy is not an opton as wife refuses to have this)? Are any others on the forum in a similar boat and what do you do? We are quite desperate so any advice most welcome.

Thanks x

Hello there.

Yep, I understand you entirely!

I`ve had PPMS for 22 years. Like you, my hubby of 48 years is my main carer.

I also have carers coming in twice a day.

They do all my personal care, which includes hoisting and toileting.

My bowels are unpredicatable too. Infact we`ve just spent half an hour in that department and all I had to show for it was a lot of bubbly wind!

So now I am hoping my tea time carer will get that job.

Most days I go twice a day, but get onto the commode in time about 80% of the time. If I cant make it, then yes, there is a mess to clear up and I cant do it myself.

There isnt really much of an alternative…except…have you heard of Peristeen? A lot of MSers do this, or have carers/spouses do it for them.Have a look into it and see what you both think.

I`ve never tried it myself, but folk hereabouts do speak highly of it.