I think it's official now

Ed1937

For the last four days she has had fecal accidents, so I guess it's time to officially say she is double incontinent now. But this morning I cold smell her, and told her we had to go in the bathroom to get cleaned up. She refused. Then she refused again. And again. And that's what makes it so damned hard. Finally, I lost it. But I got her cleaned. Why can't she just make it easier by cooperating? No, I'm not thinking about placement.

Paris20

Ed, I’m truly sorry. I dread the inevitability of an addition to DH’s #1 incontinence. Like your wife, my husband’s response to everything is “NO!” Taking pills, shaving, eating, showering, wearing his nighttime Depend pull-up. I try not to ask anything anymore. I just do it. Occasionally I have to use my old Mom-of-a-toddler voice and make it quite clear by my tone that I’d better be obeyed. It works from time to time.

A losing hand.

Ed, I read this somewhere and saved it because at the time I thought it was so true.

IT IS NOT FAIR FOR HER TO SUFFER THIS WAY

BUT WE DO OUR BEST TO CARE FOR HER EACH DAY

I GET TIRED AND ANGRY AND FRUSTRATED TO NO END

WILL GOD EVER HELP US AND BE OUR FRIEND

I HAVE NEVER GONE THROUGH A JOURNEY LIKE THIS

I LOVE HER AND WANT HER TO CONTINUE TO EXIST

LORD ONLY KNOWS HOW SHE MUST FEEL 

LOST AND ALONE AND TRYING TO DEAL

SHE ONLY WANTS YOUR ATTENTION AND LOVE

AND I PRAY EACH DAY FOR INTERVENTION FROM ABOVE

I TRY MY BEST TO MAKE HER FEEL SAFE AND SECURE

BUT THERE ARE TIMES WHEN IT IS HARD TO ENDURE

THERE IS NO MAGIC POTION TO CURE HER OR MAKE ME FEEL GOOD 

BUT WE CONTINUE TO HOPE AND WISH THAT GOD COULD

I WILL DO MY BEST TO CARE FOR HER AS LONG AS SHE WILL LIVE

AND I WILL ALWAYS BE BY HER SIDE AS LONG AS I CAN GIVE

IF ROLES WERE REVERSED SHE WOULD BE THERE FOR ME

NO COMPLAINTS NO SORROW ONLY CARE AND LOVE WOULD SHE PROVIDE ME

SO HELP ME UNDERSTAND AND GIVE ME THAT STRENGTH AS THAT IS THE WAY IT SHOULD BE.

jfkoc

Ugh....so sorry. Do try the singing and bribing approaches.

Marta

So what is up with this god. Why is there such suffering in this world?

riajean

Dear Marta, trust me the idea of suffering and what possible good can come from it is almost unfathomable.   In my heart, I know there is some reason, but hard to swallow.  God does allow some suffering for the good of a person or to bring someone to their knees because He wants us to look to him, call him, trust him and even that is hard if you have no belief or faith but I know he doesn’t bring about all suffering.  In some cases we bring it upon ourselves by our actions or decisions, but illness is tough.  My husband always said none of us get out of this world alive and while that’s true watching him decline throws me into such profound grief, all I can do is plead for Gods mercy to take him.  God alone decides and my single prayer is that at some point the realization of the benefit from suffering is made clear.  

It’s my prayer for us all.  

Marta

Dear Riajean. In thinking about what the possible justification there could be for human suffering, what have been your conclusions or justifications?

billS

Oh Ed I am so sorry to hear of this development. Is a full time live-in caregiver an option for you?

Joydean

Ed, I can only say I’m so sorry! This has to be so hard for you and your wife.

Tfreedz

Ed, I’m sorry you are dealing with this. I remember awhile ago you mentioned that you spoke to your wife about having a caregiver in to help. Sometimes our LO’s will be more receptive to requests made by someone else. I know that was the case for my mom, much more willing to shower or not question meds from a caregiver rather than from me.

abc123

Ed, I'm so sorry. Everything about the dementia journey is already so darn hard. The refusal to accept our help is really one of the biggest challenges for me. It's like, COME ON!!!! GIVE ME A BREAK. 

Is she aware that she's had a BM? Does she tell you or you have to find out on your own? I hope you can find a work around even if it's short lived.

Cherjer

I am so sorry Ed. Tonight my husband did not want to get on the toilet (after not peeing all day..he fought me until I made a threat (which I know that is completely wrong) and finally he peeed. I hate myself for doing this but had no choice...I am just so tired of this fight day in and day out.

riajean

Well, this could get very deep quickly and probably not the best place to expand on this subject when Ed in his misery has posted hoping for comfort.  His trials are all too familiar to us all on these boards, and maybe this particular subject is best started anew outside this post.

I'll say briefly that one conclusion is there is good to be had from suffering on some level.  It teaches us patience, perseverance, giving of ourselves to another on a level we hadn't contemplated and loss of ourselves for another - as in marriage, to truly love is to give of oneself with no expectation of receiving anything back.  Alzheimers teaches us as does other terminal illness that there are those who will suffer physically so that we might show another extreme love.

Suffering forces us to let go of self.  Though hard, those of us who give care grow exponentially as people or can if we allow ourselves.  In some cases, there is no way out other than to learn from what we're being taught.  What's tough is watching another suffer, especially a spouse when we feel in our hearts it's unfair.  I've thought often that HE is the lucky one because I'm still "knowing".  He may be suffering physically, but isn't so aware as I seeing him and in that way, he's kept from knowing much.  I thank God for that.  If he's not aware totally, then his suffering is less.

Gig Harbor

I have used threats in a very stern voice. It works sometimes. Maybe he thinks he is back with his mother.

Jo C.

Ed, I am so sorry; this is the big caregiving challenge none of us want to have happen.  While we know that fecal incontinence is in all probability the advancement of the dementia, it would still be good to allow ourselves to have other causations ruled out for a slim possibility "just in case" sort of thing.  Could the fecal incontinence be caused by medication effect, or by some foods, or a viral/bacterial sort of thing; could she have a low level irritable bowel syndrome dynamic happening . . . . always worth taking a look at being hopeful.  Filed under: "Hope springs eternal."

At one point when this happened with my LO, it turned out after figuring it out for awhile that my LO had an onset of reaction to a med that had been taken for some time without any problem until suddenly it did.  It took awhile to figure it out - adjustment with MD prescribing and it made quite a difference.    I know; it is like whistling in the dark, but perhaps worth a thought.  You did the right thing in your being strikingly stern; glad that worked.

J.

Pam BH

Ed, I'm so sorry. We're constantly forced into new phases and somehow find the fortitude and know-how to handle it, and you handled it wonderfully for your dear wife. You're a great caregiver

Ed1937

Thank you all for the support. I didn't expect to have more than a couple of replies because we all know this is the destiny for many of us. I guess my post was more of a rant than anything. Not even sure why I posted about it. Many of you are already there, or have been. Thanks again.

Joydean

Ed, you have helped me and others in so many ways, you are always there for us, so of course we will be here for you. I can only speak for myself to say you have helped me. My husband has just started with urine incontinence, based on your recommendation I have ordered the briefs for men. So thank you for your help. 

Prayers for you and your wonderful wife. 

JoseyWales

Ed, I'm sorry your wife has reached this next milestone. We're not there yet, but I know it's a step most of us will experience.

I think you have so many replies because people care so much about you, and through you we care about your DW too. You're one of the few here that openly share what's going on, and we follow along and want to support you. We follow your journey, and compare it to ours. 

Pam BH

Yes, Ed, I echo the thanks for all you do for us as well as your wife. Just ordered and received crib pads and extra sheets to layer on the bed thanks to your posts.  Keep the tips coming!