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Sensitive Issues (sex, toiletting etc) - Carers UK Forum

Sensitive Issues (sex, toiletting etc)

Share information, support and advice on all aspects of caring.
I have in the past two years suffered something of an emotional breakdown, and I was assessed recently by a senior mental health practitioner who diagnosed me as being very depressed.

However, during these times of low mood I find coping with the double incontinence of the person I care for difficult and stressful and I often feel upset and very distressed about it even though for 17 years I seemed to cope with it no problem: but two years ago it started to really get to me. I feel guilty about it as I feel my role as wife and carer are one and the same and it's really no big deal. But I find it particularly difficult if it happens during intimate moments (which is less often now that the person I care for uses Anal Irrigation which has drastically reduced accidents in bed).

Does anyone have any tips on how to cope with the emotional side of switching from carer to lover, and trying to cope with coming to terms with it? I find it particularly hard when there is an accident in the bed and it's quite a lot - I just couldn't face cleaning the last sheet off and threw it away. I have scraped, rinsed and bleached so many sheets in the past 19 years when I am not strong emotionally I just can't face it.

Some mornings I just find I can't even empty the catheter so I have been putting the whole thing in the bin, but I know I shouldn't really do this, but I just can't face the smell anymore on really bad days.

I am sorry to raise this, but my mental health practitioner suggested I share my problem and try and get support and advice from other carers who maybe have to face the same issue. He said it is a huge role to switch from lover to carer - he seemed to think some of my depression was reactive partly to this issue, so any help and advice would be appreciated even though I know this isn't a very nice topic.
Hello Lily,

Sorry I don`t have the answers, but I do remember there was a thread about similar subject here a while ago, so maybe one of the mods will put up the link for you.

I can not begin to imagine how you must be feeling, but send you a virtual (((HUG))) from me to you.xx
I coped with being a carer well for many years, fortunately not with continence issues, but then I just got worn out, then soldiered on, and developed an illness which might have been fatal. Only then did one of my carees accept outside help. I'm desperately concerned that you don't mention being given any practical help whatsoever. It's all very well people saying you need to look after yourself better etc. etc. but how the heck can you do this if you never get proper time off to find "me" again? It's no wonder you are feeling you can't cope, you've simply coped with far too much, for far too long. It's time for a new updated needs assessment for your caree from Social/Adult Services; a new carers assessment for you, when you can tell SSD loundly and clearly that you don't want to do all this any more. I know there are others here with lots of experience of continence issues, who will be around later, but I just wanted you to know that you will find a lot of practical and emotional support here.
Thank you for your replies - yes it would be good if I could read a previous thread on the issue.

I am feeling a little stronger today - I was honest about how I felt with my caree and that has helped (though I think it was quite painful for him in some ways which is understandable): he has said he would be happy to have nurses in, so I might have to resort to that if it gets too much - but often the time when you need them they aren't available! (....say if a number 2 accident happened at 11pm).

I think partly to know that my caree has some understanding how I am having difficulty is helpful to me - he said he finds it embarrassing too when it happen, though his behaviour has never indicated that, but maybe that was a coping mechanism on his part. He always seemed so blase about it and not at all conscious of how it might be affecting me emotionally which I found hurtful I think if I am honest. I often wondered would he do the same for me, and I am unsure about that. I think he would find it hard to do, and then fulfill a sexual role.

I know that nurses often use some kind of lavatorial humour with patients - but I am not sure I would be gifted at that, and a husband/wife dynamic is totally different to nurse/patient in many ways.

I also bed bath my husband because although he can wash himself he wasn't doing it properly and so he was getting a lot of UTIs (which then meant a course of antibiotics - and antibiotics upseyt his stomach, and an upset stomach meant diarrohoea in bed and pants, which meant a lot of work cleaning etc etc) - so I decided to bed bath cleansing the genital area carefully and thoroughly and this has cut down the UTIs significantly, but again I have to switch gear - when I am washing his genitals it has to be non-sexual, as it is just biological and nusring role, but then obviously in more intimate moments you have to switch gear emotionally, and then it is sexual. Maybe it's just me making a mountain out of a molehill. I am coping not to bad with this aspect at the moment, but sometimes when you're feeling down it's just the straw which breaks the camels back so to speak.

Thank you for your help and concern.
Catheter changes, legbag emptying, nightbag emptying, both kinds accidents in bed, both kinds accidents in wheelchair in middle of museums/outings/car, washing, clearing up, changing .............. I would just switch off from everyday thoughts and concentrate on what I was doing. All the time I was thinking, I'm doing it for hubby, I'm doing it for him to get him nice and clean again and comfortable. Then if he's clean and comfortable then so am I, it's for the good of both of us. Hubby can't help what he's doing or how he is, not his fault. Used to get desperately sad when accidents happened, cos he used to be so apologetic and embarassed really, all I wanted to do was make him clean and nice again.
Don't think about what you have to do, concentrate on getting it done as quick as you are able and get back to both of you being 'nice' again. Then you switch back and carry on.
I used to feel it was like I had two different parts to my brain, a normal part and a caring part. I just switched from one to the other.
And by the way, on talking to the DN's years ago, I was told that "no. 2 accidents in the middle of the night were highly unlikely". How the **** does she know? Totally, totally untrue and I won't tell you how angry my reply to her was.
Have you considered passing the caring side of your role completely over to paid care workers - a care home or supported housing? You say you are depressed, and that is a very natural reaction: but taking lots of pills wont actually remove the situation which is making you ill. It is more likely to make you even more ill in the longer run,as long as you continue this kind of punishing regime.
If it were me, I would have no hesitation in quitting hands-on care. This isnt a sign of failure, it is a sign of strength, and it doesnt mean you still cant be a couple.
All the time I was thinking, I'm doing it for hubby, I'm doing it for him to get him nice and clean again and comfortable. Then if he's clean and comfortable then so am I, it's for the good of both of us.

Yes that always has been a motivating factor - to get it dealt with asap so we can get back to normal, but with my depression I just haven't been able to hold that perspective
Hubby can't help what he's doing or how he is, not his fault. Used to get desperately sad when accidents happened, cos he used to be so apologetic and embarassed really, all I wanted to do was make him clean and nice again.
Yes as I said in my post above I think if my husband had shown more signs of embarrassment I might have felt he understood my perspective more, but I always felt he was not really that bothered when it happened and I would just clear it all up - he never cared about how I might be feeling about it and he never expressed any embarrassment, but as I say maybe that was his coping mechanism.

Yes two parts to the brain - I think that is how it just is and has to be, normally OK, but a struggle when life seems bleak.

Scally - yes as I said in my last post, my husband has said he would be willing to have outside help so that is an option (though it's not always at the time needed or convenient!)

Thank you for your replies.
Another thought to save you so many complete sheet changes. Do you have 'Kylie' sheets or bedmats which you put on top of the bedsheet and then hubby lies on top of that. They are waterproof and washable. I used to get rolls of blue paper towel from the DNs which I would mop up with and chuck everything into a carrier bag, which would then be tied at the top and chucked in the yellow bag or the black bin (our area said it was fine to do this, before anyone shouts at me Image ).
I wish I could give you a hug and a help, cos I know exactly what you're on about.
Thank you NanaNana - I hadn't heard about Kylie sheets, that is interesting. At the moment I just use a cheap sheet with a baby's bed sheet in between, and if there is a mess I usually clean it off (can be quite a job), bleach it and re-use it. However as I say, using anal irrigation has drastically reduced these accidents. I am coping OK - I just got really low and found it difficult.

Sharing about it has helped somehow - odd how just talking about it can help put it in perspective.

What I wanted (have even thought of trying inventing) is a sheet which goes across a double bed, but on the side where the problem is there is a removable section (thought secure so it doesn't get scrunched up in the night) which can be discarded in the event of an accident, but I think it's an impossible task!

My husband used to sleep in incontinence pads before he self-catheterised (self-catheterisation has, fortunately, made him continent for urine), but this meant lack of air to the genitals 24/7 and caused infections, so he is better not sleeping in pads - but even then it is a messy job cleaning someone up if it happens in pads.

I felt a bit delicate this morning and my husband agreed to empty his own catheter bags which he had used during the night which he was happy to do (he uses ones with bags on the end at night, and uses ordinary ones during the day which he just tips down the toilet). Asking him to help in this way has been a big step forward - I felt a failure for not being able to do it and battled on, but I think the cared-for person is happy to help when they are aware of our problems as carers.

I probably sound really selfish, but depression is a self-centred world at times, and jobs like this dealing with intimate areas become a major issue but hopefully as my mood lifts I will get back to normal on these issues.
Lily have you thought about disposable bed pads for his side? They lie flat so no ventilation problems and when there is an accident, you just roll them up and throw them away.