Last straw

[Bettysue]

I’ve just poured a large gin and tonic after getting my partner to bed. He was reluctant to get his pyjamas on which initially set me off as I was very tired and couldn’t bear 20 minutes of refusal and dithering. He then started to undress and on picking up his trousers I discovered he had had a massive bowel movement.
I dealt with it very badly and really could hardly bear to sort it all out. It was on his hands,on the freshly laundered duvet cover,everywhere! I got him in the shower and eventually he got to bed. This has happened a few times since a recent hospital stay. He was badly constipated and is now on doses of laxatives but it seems we can’t find a balance. He was already urinary incontinent. He cannot express himself and he does not understand me. I feel that I don’t deal with it very kindly and get very exasperated and upset by it all. He just looks bewildered.
I’m beginning to feel I’m reaching the end of the road. I know I’ll probably pick myself up and get on with it all again tomorrow but I hate my reaction. It doesn’t seem fair on him but is this illness fair to any of us??

 

[Duggies-girl]

Well a big well done @Bettysue and I know that is no help but for me that may well have been my line in the sand although we never quite got to that stage. Don't blame your self for feeling this way, it must be a very difficult situation to deal with and it is not fair to anyone especially you.

Enjoy your gin and tonic and lets hope you have a better day tomorrow but there is no shame in admitting defeat.

 

[AwayWithTheFairies]

Sounds like the most reasonable response to and unreasonable situation! Sorry it’s been a bad day.

 

[Grannie G]

Hello @Bettysue

Reading your post and the heading makes me wonder if you are just letting or steam, which is fine, or on the verge of carer breakdown, which is not fine.

There may come a time when a gin and tonic will not be able to make you feel better after a very tough day and I beg you not to let it get to that stage.

Sometimes carers will continue way past their own well being because the treadmill doesn`t allow them to stop and think.

I have been at that stage and it was a friend who asked how much longer I would be able to meet my husband`s needs without it being detrimental to my own health which caused me to stop and think.

 

[jennifer1967]

dont feel bad about the situation that you did well to sort out. enjoy your gin and tonic. when you are tired, things can get on top of you and everything is ten times worse. i hope you got some rest

 

[None the Wiser]

Hello. I completely relate to your feelings and response. I too felt exactly the same from time to time. I didn’t mean to be exasperated and ‘unkind’ but I was. I realised in the end that that looking after my husband was more than a one person job. It took me a long time to get there, but sadly he’s now in a care home with one to one care 24/7. He’s well looked after as it’s so much easier with a team of people. There are all sorts of issues about being in care at the moment with restricted visiting etc., and it’s not ideal, but I had managed for as long as I could. You’re right you pick yourself up and get in with it day after day. The emotional, physical and mental cost is great. Take care of yourself. I‘m in a rush so hope this makes sense.

 

[MaNaAk]

I’ve just poured a large gin and tonic after getting my partner to bed. He was reluctant to get his pyjamas on which initially set me off as I was very tired and couldn’t bear 20 minutes of refusal and dithering. He then started to undress and on picking up his trousers I discovered he had had a massive bowel movement.
I dealt with it very badly and really could hardly bear to sort it all out. It was on his hands,on the freshly laundered duvet cover,everywhere! I got him in the shower and eventually he got to bed. This has happened a few times since a recent hospital stay. He was badly constipated and is now on doses of laxatives but it seems we can’t find a balance. He was already urinary incontinent. He cannot express himself and he does not understand me. I feel that I don’t deal with it very kindly and get very exasperated and upset by it all. He just looks bewildered.
I’m beginning to feel I’m reaching the end of the road. I know I’ll probably pick myself up and get on with it all again tomorrow but I hate my reaction. It doesn’t seem fair on him but is this illness fair to any of us??

Dear @Bettysue,

Dad never had problems with bowel movement but at night there were times when he couldn't get to the toilet in time to release his bladder and I did my best but at this time I already had carers coming in. Do you have carers because I think now is the time to get more help?

Hugs

MaNaAk

 

[Sandy47]

Hi Bettysue.
I have very similar experiences with my husband and sometimes I dread bedtime and the friction it can cause. My husband usually goes to sleep quickly afterwards while I lie in bed feeling guilty, miserable and unable to sleep. He forgets what happens, I can't forgive myself and vow it won't happen again. But of course it does because I'm human, get tired after a day of caring and really just want to sleep so I can do it again tomorrow.
I find a glass of wine while I'm cooking the dinner in the evening helps me unwind and is my treat to myself. Enjoy your gin and tonic. I am sure you deserve it. Cheers.

 

[Janey B]

Hi Bettysue
Totally empathise but no magic wand I’m afraid.
My OH also has trouble with constipation and the problems that brings. He has medication but we can’t seem to get it right either.
It’s so frustrating sorting him out after accidents he has no idea what’s happened or what to do and of course can’t/ won’t cooperate or follow instructions. I get so frustrated and then when I see the worry in his eyes because he knows I’m upset ( not the reason why)
I could cry in fact as I am typing this I am crying it’s just so sad.
Not sure who I’m crying for me or him but I guess it’s me. He is totally unaware of any problems just aware of my emotional state and unfortunately that really affects him.
So I try to be upbeat and pretend nothing is wrong.
So onward we go sending hugs ?

 

[Jaded'n'faded]

I’ve just poured a large gin and tonic after getting my partner to bed. He was reluctant to get his pyjamas on which initially set me off as I was very tired and couldn’t bear 20 minutes of refusal and dithering. He then started to undress and on picking up his trousers I discovered he had had a massive bowel movement.
I dealt with it very badly and really could hardly bear to sort it all out. It was on his hands,on the freshly laundered duvet cover,everywhere! I got him in the shower and eventually he got to bed. This has happened a few times since a recent hospital stay. He was badly constipated and is now on doses of laxatives but it seems we can’t find a balance. He was already urinary incontinent. He cannot express himself and he does not understand me. I feel that I don’t deal with it very kindly and get very exasperated and upset by it all. He just looks bewildered.
I’m beginning to feel I’m reaching the end of the road. I know I’ll probably pick myself up and get on with it all again tomorrow but I hate my reaction. It doesn’t seem fair on him but is this illness fair to any of us??

Well, how are you supposed to react? With glee? Poo is smelly and unpleasant and difficult to clean up. You are human. Forgive yourself!

If it smelled of roses and disappeared when you waved a finger (a la Mary Poppins!) that would be different

You're doing a great job but everyone has their line in the sand. (I wouldn't go near my mother's nether regions... just couldn't cope.) Your words suggest you are fast approaching yours and you are entitled to a decent life too - don't forget that. Please start researching care homes.

 

[Andy54]

This was the point with my wife when I decided I couldn't carry on any longer. She wasn't incontinent but used to get into a terrible mess in the toilet and then resist being cleaned up. There were times when I had to stand with my back against the bathroom door to prevent her from leaving and spreading it around the rest of the house. Sometimes it could take an hour or so before she could be persuaded to be washed or showered. She also resisted personal care from the carers coming to the house. She moved into residential care 3 weeks ago, seems to be settling in quite well and I am told by the carers that they have no trouble getting her to shower !

 

[Bettysue]

I appreciate all your comments and I know, or at least, hope that in a few months my partner may be in full time care. This will be difficult and guilt ridden but I am forcing myself not to view it as totally negative. He enjoys the stimulation of day care and still retains parts of his personality so I persuade myself there will be benefits for him. I am relatively young(67) to be in this situation so cannot allow myself be worn down by it.

 

[Hazara8]

I appreciate all your comments and I know, or at least, hope that in a few months my partner may be in full time care. This will be difficult and guilt ridden but I am forcing myself not to view it as totally negative. He enjoys the stimulation of day care and still retains parts of his personality so I persuade myself there will be benefits for him. I am relatively young(67) to be in this situation so cannot allow myself be worn down by it.

I recall many years ago being in semi-charge of a baby cousin and learned the correct procedure for regular nappy changing. The widowed mother tended her only child as any good and loving mother would without reservation.
That experience was close to my heart when tending to my late mother when incontinence became a real challenge. The difference of course is highly significant. Total innocence and vulnerability belongs to the former scenario because a baby poses no threat psychologically and a mother's instinct prevails despite everything. An awkward or uncooperative adult poses a very different challenge. But when dementia is wholly the culprit it presents one with a personal dilemma and a huge challenge. This is what is often missed in Care due to all manner of reasons , time being one and a total commitment to that Care not being a practicable proposition. But home Care is another story. The level of commitment can astonish even the seasoned nurse. And the relationship to all the presentations in dementia with all its inevitable changes and physical challenges demands tremendous energy and the empathy of a Saint because the soiled clothing or the unexpected vomiting or the refusals and the paranoia and much more, evolves from an innocent body, an adult baby, but way beyond the pure vulnerability of the child. The face of dementia masks what might be a living psychological nightmare for the one it has claimed. We just cannot know how painful or bewildering that state might be. Even the quieter moments might cloud a turmoil within.
There were times when my dear mother would giggle when wind was passed and l would joyously giggle with her. I tended her as would a district nurse and did so without reservation . I did not balk at excretion nor sudden urinary mishaps, because they were not of her making and in essence, natural. That is not to say for one moment that this did not take its toll. It did.
The inevitability of the Care Home addressed the increasing difficulties which progressive dementia made virtually unmanageable. The regime there provided a much more fluid application of Care and enabled both comfort and proper attention to all aspects of Care. My mother settled into the Home because her dementia had ironically removed the notion of being elsewhere or not at home. For my own part it was profoundly distressing and required considerable introspection and a deep sense of what truly matters in this whole endeavour which is Care of a loved one with dementia. So, when the inevitable arrives and the transition takes place, if in your heart of hearts you know you did all that was physically possible and psychologically sustainable, then that transition becomes a righteous move, albeit in itself a huge wrench. There are books and lectures and very good ones too - but the actuality remains light years from theory and texts. It tests your humanity and exposes weaknesses which might have once seemed the contrary. And when one day the journey ends, something remains inside of you which cannot be touched nor extinguished by anything or anyone. And that ' something ' belongs to you.

 

[Dutchman]

I’ve just poured a large gin and tonic after getting my partner to bed. He was reluctant to get his pyjamas on which initially set me off as I was very tired and couldn’t bear 20 minutes of refusal and dithering. He then started to undress and on picking up his trousers I discovered he had had a massive bowel movement.
I dealt with it very badly and really could hardly bear to sort it all out. It was on his hands,on the freshly laundered duvet cover,everywhere! I got him in the shower and eventually he got to bed. This has happened a few times since a recent hospital stay. He was badly constipated and is now on doses of laxatives but it seems we can’t find a balance. He was already urinary incontinent. He cannot express himself and he does not understand me. I feel that I don’t deal with it very kindly and get very exasperated and upset by it all. He just looks bewildered.
I’m beginning to feel I’m reaching the end of the road. I know I’ll probably pick myself up and get on with it all again tomorrow but I hate my reaction. It doesn’t seem fair on him but is this illness fair to any of us??

I’ve just come across your post @Bettysue and I’m reminded of my situation with my wife. I didn’t need to clear up that much after her because she never took her clothes off! All the smelly stuff was contained in the underwear and despite a specialist carer coming in twice a week we never got her clean which resulted to the inevitable infections.

No matter how much you love someone cleaning them up and having to clear up the surrounding mess can only last so long before something has to give.

I just wish that back then my wife would have let me undress her, I get undressed, stand in the shower together, have a nice soapy shower together, loads of warm water, pleasant music nice smells. Now wouldn’t that be nice and intimate.

But all I got was “ no, leave me alone”. Cooperation would have made both our lives easier and I believe extended the time she was here at home with me.
I bought her expensive underwear which was never used and is still in its wrapper in the drawer. Incontinence in dementia people is often the deal breaker because of their uncooperation. Different if they had their mental faculties and you could reason it out together.

So, what I’m trying to say is, get some help if you can as you can’t deal with this all on your own. No one will expect you to cope with this on your own
Peterx

 

[Bettysue]

Thanks for your reply. I feel I’m in a downward spiral. Last night he refused to get undressed and ready for bed. When I went back upstairs he was in bed fully clothed. The result of this will be a complete bed change and the start of another stressful,frustrating day! I feel I’m getting more and more tired and have little patience to deal with it all. It’s the complete lack of any meaningful communication or understanding that wears me down.

 

[Starting on a journey]

@Bettysue .... I have a line in the sand ....faecal incontinence is it . I know that it is too much for one person to do
@Hazara8 I found your post thought provoking. I have had 3 children and thus changed a lot of nappies. When my baby grandchild stays nappies are changed as a last resort whilst her mum sits cooing all over her baby happily changing her.

 

[Bettysue]

Hello @Bettysue

Reading your post and the heading makes me wonder if you are just letting or steam, which is fine, or on the verge of carer breakdown, which is not fine.

There may come a time when a gin and tonic will not be able to make you feel better after a very tough day and I beg you not to let it get to that stage.

Sometimes carers will continue way past their own well being because the treadmill doesn`t allow them to stop and think.

I have been at that stage and it was a friend who asked how much longer I would be able to meet my husband`s needs without it being detrimental to my own health which caused me to stop and think.

 

[Bettysue]

I’m rereading my post from last week and your comments about carer break down are really resonating. I have several friends who I know are concerned about me. I think I was brought up to be fairly stoical and it goes against the grain to admit defeat . I class myself as a problem solver but I am faced with a problem I cannot solve . I veer between tears and nastiness to my partner. I cannot deal with his stubbornness and refusal to do things -which can be as simple as refusing to take his tablets. To sum it up I am in a situation I simply don’t want to deal with any longer. Respite is not an option just now as he would still have to isolate for the 2 weeks which defeats the purpose. Do I throw in the towel and start to make moves toward full time care? Therein lies another nightmare. He would have to be funded and might end up in a care home which would not be of the calibre I’d like. Another guilt trip! I’m beginning to feel I don’t have the will to sort it all out.

 

[AwayWithTheFairies]

Send him to a care home for a couple weeks holiday/visit. No reason to feel guilty about that and he may even like it. You must have a break from this. It could serve as a test drive, or a clear indication once you have had a rest, that you want to continue with home caring for a bit longer.

That’s what I am going to do when the time comes.

 

[Grannie G]

I veer between tears and nastiness to my partner. I cannot deal with his stubbornness and refusal to do things -which can be as simple as refusing to take his tablets.

The stubbornness is most likely to be a symptom of the illness and your reactions are because the challenges of the symptoms are too much for any one person to manage.

A team of people with no personal attachment, who can go off shift and home to their own lives, will be under so much less pressure than you are at the moment

Please take steps to make life better for both of you.