So sad

[Skye]

I feel so depressed tonight. After a couple of weeks of reasonable health, co-operation, even happiness, John has today reverted to his 'messy' habits. Why does he do it? He's always been so fastidious. Or am I trying to be too logical?

Anyway, after a day of cleaning up after him, the phone rang this evening, it was my sister in Australia to tell me my nephew had just passed away from cancer. We knew it was coming, but it's always a shock when it happens. I went through in floods of tears to tell John, to find he'd 'smeared' the loo again. I'm afraid I broke down and howled.

I'm back to the 'I can't cope' again. I want someone to hug me, I want to be in Australia giving my sister a hug, but most of all I want my John back.

Hopeless, I know, but I had to talk to someone.

Skye

 

[Canadian Joanne]

It's the disease

Hello Skye,

Yes, my dear, you are being too logical. John cannot help himself. My mother was diagnosed almost 6 years ago and she has been in pull-ups for several months now. I tried my hardest to keep her out of them because it was an admission of her decline to me.

They cannot help it. They would not be that way if they could avoid it. You mentioned in an earlier post that John doesn't seem to mind the underwear (or was it a night pad - oh well, can't remember ) so keep on with that. Do not expect any improvement, he will have good & bad days.

Hang in there.

Joanne

 

[TinaT]

Oh how I understand where you are coming from. When my husband started to become doubly incontinent I thought it was the end of my world. Tons and tons of air freshner before I start cleaning up helps me tremendously.I suspect you look after your husband almost totally alone as I do for my husband. It is such a hard situation for you. Has your GP put you in touch with a local incontinence clinic? Can a social worker get you a home visitor from one of the agencies? You may have to pay as this service is income assessed but if you can get it you will be free to recharge your batteries. Keep your chin up love. I am thinking of you

 

[Grannie G]

Tina and Skye
I`m so sorry.
We have not yet reached the stage that you are experiencing, but I know it will come and am dreading it. My husband is unhappy now, feeling he has lost his dignity and self respect, so how he`ll be further down the line, I just don`t know.
When you said you just want your husband back Skye, I did know how you felt. The sharing has gone, the partnership has gone and the responsibility has gone too.
It`s lonely being a Carer. They are there in body but not in spirit. It`s sadness that has to be tolerated.
Take Care Grannie G

 

[Nutty Nan]

Yep, too logical I'm afraid ...... I know exactly what you mean, including the 'once so fastidious' bit, and I wouldn't want to be too graphic in my description of our goings-on, whether in the bathroom or not. At least in the small bathroom the mess is slightly more manageable. When I assist, I always wish I had more than one pair of hands, but the best I can do is to have everything within my reach (the tricky bit is that if utensils are within hubby's reach, they are unlikely to get used for what they are intended). - Speed is of the essence, and an ability to hold your breath for a considerable length of time, especially if it is too cold to leave the window open.
Another trick is to find the funny side in the situation, like singing a totally appropriate or inappropriate song (If they could see me now ....) or laughing with hubby when he says "woa, what's this dreadful smell in here???"
Yes, it is sad, it is undignified, it is messy and exhausting, but it is part of our lives now, so we can do only one thing and that is get on with it and remind ourselves that we are not on our own.
Thank heavens for TP!

 

[noelphobic]

I
Anyway, after a day of cleaning up after him, the phone rang this evening, it was my sister in Australia to tell me my nephew had just passed away from cancer. We knew it was coming, but it's always a shock when it happens. I went through in floods of tears to tell John, to find he'd 'smeared' the loo again. I'm afraid I broke down and howled.

I'm back to the 'I can't cope' again. I want someone to hug me, I want to be in Australia giving my sister a hug, but most of all I want my John back.

Hopeless, I know, but I had to talk to someone.

Skye

I'm so sorry about your nephew and that you've had to deal with it on your own, to a large extent. It must be so hard that your sister is so far away and your situation is what it is.

Nothing I can really say but just needed to say something.

Take care of yourself.

 

[Skye]

Hi All

Thank you for your replies. I have seen SW, and the incontinence advisor is coming to assess us on Tuesday, so at least someone is listening at last. It's so stressful having to fight for everything, and the news of my nephew's death just opened the floodgates. I do know that I have to cope with it, and I will, of course. But I still feel as if someone has punched me in the face, and I've got the blinding headache to prove it.

Thanks for your support. I'll try not to let off steam too often.

Skye

 

[Canadian Joanne]

Let off steam often!

This is the place to let off steam as often and as loudly as you need to. We're all here together on the good ship Alzheimer.

Joanne

 

[Amy]

Hiya Skye,
Hopefully by letting off steam here, it enables you to cope with what you have to - nobody keeps count of who is letting off steam and who is cheery - we do what we need.
Love Helen

 

[mel]

Hi Skye
like the others say this is the place to let off steam.....so don't even think about feeling guilty.....My mum was always so fastidious and i find it all so hard to cope with at times.......i have to smile sometimes..when these things happen mum is horrified to think that someone has been into the house and made all the mess ....its usually my kids and their friends or strange men who have done it......perhaps thats mums way of preserving her own dignity.......?
love
xx

 

[Kathleen]

This reminds me of a lovely lady in a rest home I worked in, she would toddle around with her zimmer and occasionaly leave a not so fragrant "trail" behind her, without fail she always turned to look at it and ask quietly

"Who did that?"

We never knew if it was denial on her part or she really had no idea, but no-one ever said it was her, she would have been mortified. Admittedly it helps if you can breathe through your mouth rather than your nose until the worst is over!

The staff at Mum's home don't seem to make the slightest fuss when someone has an accident, they are very matter of fact and that seems to help those who get upset or are bewildered by what is going on.

Kathleen