Think S's are bowels are on that slippery road to incontenance. For months now, I have, with the help of the hospice, trying to get some sort of bowel management in place. DN's said it wasn't possible, but now they have admitted, yes it is, they are getting the bowel and bladder people in. Of course, they need at least six years notice to lift a finger. This morning made it obvious that we haven't got that sort of time scale, so after collapsing on to my sister's very broad shoulder. She put a call into the DN's. Eventually they got back to her. In the meantime, as I had to drop a prescription request in the doctors, I asked to see if any these lovely ladies were in. My DN, happened to be there, so again, collapsed on to her shoulder. They really can't cope with tears, can they???? (Hence the Oscar!) The Sister, who had just put the phone down from my sister, walked through the waiting room, finding me in said state! Now, surprise, surprise, she is putting in a priority call, that the bowel people have to respond to. HURRAY! Don't worry, I wouldn't dream of holding my breath.
I am afraid this is a huge red line for me, I won't be able to cope. It will be nursing home time. I thought I was sort of prepared, but I'm not. Surely it's cheaper for a DN to pop in every few days and give an enema, blocking him up the rest of the time, rather than shoving gallons of laxitives down him, that don't work half the time and having him in a home full time? Or am I being naive?
Happy Friday night everyone and special love to NannaB.
Lots of love
Heady
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Heady
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Aww heady, firstly big big hugs!! Now this subject happens to be one I'm getting to know more about daily! If dad doesn't "perform" for 48 hours the laxatives start along with coffee with soft brown sugar, baked beans, prunes, orange juice etc. If on the 4th day nothing, it's suppostries time from the DN! It's an ongoing battle and dads wears pads now and has done for 6 months, before that he wore pull up type pads for the wee but their now needed to try and contain both! It's not easy and you will need help from the DN and incontience team and most importantly carers! Have you got chc? Your gonna need all the help you can get! This isn't the end and is manageable but I'd say only manageable with carers and DN's!
Darling heady, if you can't you can't! You've done your best and your best has been amazing and brilliant! Don't beat yourself up, remember this is Psp trying to break us all! I'm a firm believer in what will be will be so if a nursing home is needed then so be it! Wish I lived near you, I'd give you a great big fat cuddle!! Lots of love x
Heady DN gave me some glycerin suppositories which I put in with my rubber gloves while George is laying on the bed, they work for George, they are really good. Sorry you have had all this today, you can do without it, and yes it makes sense for the DN to come in and sort it out a few times a week. Do try the suppositories, things we have to do, can't imagine George doing it for me though. NannaB thinking about you today. Yvonne xxxxxx
Hi Heady join the bowel brigade - yes it is really hard- V can not go for a week then has an enema and then goes for England .After that it is hit and miss - a combination of laxadol ,sennakot and docusate makes life less than interesting but extremely active . Hoist to commode to bed to chair several times a day plus "accidents" in-between is exhausting to say the least .Management where does that come in ? I haven't found a way yet .That coupled with catheters which regularly block and no answers from " Bladder control unit " They refuse to acknowledge open ended other than being used in supra catheter mode despite being given chapter and verse on where to get them etc . Means I spend most days attending to one orifice or another . In order to cope I would need help 24 hours a day as you never know when things are going to happen -my 17 hours a week seems pathetically inadequate under the circumstances .Still soldier on -what else can one do .My only consolation at the moment is that I keep making myself really nice blackberry and apple crumble .Daren't weigh myself but hey ho who cares .
I'm so sorry Heady, Its so difficult, It is hard to carry on, I couldn't, I will never forgive myself for not being able to cope and I still do lots of his care in the lovely home he is now in. The staff there probably know him better than I do now, he laughs (well smiles) more than he has in a long time with me, tonight they had a firework display and we had a meal and a drinks trolley, well, hubby had a large thickened whiskey, never saw him drink so fast and no chocking, needless to say, he went to bed smiling, sending love xx
Heady you're not alone. It was the bottom line for me too! Some people seem to be able to cope with it but some of us can't. As Georgepa says, it's the unpredictability of it that's the breaker as, unless you have full time care at home, you are still left coping with the hoisting, showering, cleaning up etc when you are on your own a lot of the time. It was at that stage that D went to the very nice nursing home. I still did a lot of the care there but concentrated on feeding him, talking to him, taking him in the garden and on outings etc. - much better for both of us than stressing about the nappies!
Hope the bowel team get back to you asap and meanwhile enjoy the 🍷with your sister.
Thank you Vikkie, the bowel team have made an appointment with the DN's to come on Wednesday, without consulting me. That's his day to go to the hospice and I am not cancelling that. Still that's Monday's fight. Things a bit calmer here. Think yesterday's problem was caused by a heavy handed Carer and me realising that this day is only just around the corner.
I want to last until at least the New Year. Don't ask me why, something about setting targets, I think. Rather stupidly, was beginning to think I could stretch that goal until Easter. Should have known PSP would want scupper that feeling.
Please don`t beat yourself up, you have done as much as is humanly possible for S .... probably MORE ! PSP is s**t and gets us all in the end, one way or another.
We are a year on from P going into a nursing home and honestly, it was the ONLY solution left to us. Things have been better than I had hoped, so bite the bullet and do what is best for you both.
Thanks NanBabs. I am not beating myself up, just upset. I was feeling quite good, after my rest and have coped with everything this week, until this. Things are calmer now, just a heavy handed Carer, I think and it frightened me.
Heady I surprised myself doing things I never thought I could deal with, but I did for a while, I sort of went into auto pilot and just got on with it! Not pleasant I know and eventually it did get to me and I couldn't cope any more as everyone knows. I've really struggled with my conscience after taking Keith to the nursing home, it's an awful feeling, so much different that going for respite when you know they will be coming back home.
All I can say is you have to do what's best for the both of you, there does come a point when you think enough is enough! I miss Keith dreadfully, our house just isn't the same without him 😔 On a lighter note my youngest son made me smile when he said "What's new Mum, he's only just over the road where he's always been!" Meaning when Keith was at the pub!
I'm thinking of you Heady and send you a great big hug, I know you'll make the right decision in the end!
Big hugs being sent to you heady - my mum is on cosmocol once a day but can be taken up to 3 times a day and this seems to work for her but I agree the cleaning up is the worst and have said that I cant cope if it goes to nappy stage
Hi Heady, We are never prepared for the different stages of PSP.I feel exactly the same about nappy changing I could never do it, and I know we are never prepared for the next stage. I know my last episode of hysterical crying I got some home help. Please dont beat yourself up as sometimes it becomes out of our control. Big hug and perhaps another glass of wine xxxx
I have had that extra glass of wine, now at 10.30pm awaiting the DN to visit. He is peeing blood into his bag. So my wine has changed quickly to a strong cup of coffee!!! When's my next respite???
Oh Heady I hope it is nothing serious, isn't it marvellous you go away for a week come back refreshed and it is nothing but s***t to make you forget your week away, do you think these things are sent to punish us for having a break? !!!! Big hugs Yvonne xxxxx
Only just read your post Heady, you are certainly having a tough time and sounds like you are at the end of your tether. You have to do what is best for the both of you, it doesn't mean you have failed just that the he time may be right for you both to move on to the next stage. I so feel for you Heady as I know that I will be in the same dilemma in the not too distant future. Look after and be kind yourself.
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Not PSP related, but Mum's gone
Mattress air pump tips. 
Waiving not yet drowning
Stopping and starting eating and drinking
