I've posted a couple of time about my situation: loveless marriage I've been wanting to escape for years, husband's decline with Parkinson's plus (MSA or LBD), loss of rental house looming, and opportunity to move to another state to live with a friend. I had many supportive and encouraging responses here, for which I'm thankful!
Update is that I filed for divorce and have a final court date on November 3. My landlady called and we had a great conversation in which she was looking out 6 months or so to sell, and for me to have no worries. In the meantime, husband was moved from palliative care to hospice, and his social worker is looking for placement for him. I'm hoping to get everything squared away so that I can be independent of this situation by the end of the year.
A lot of forward motion, for sure! But depression and hopelessness are overwhelming me lately. I was already inundated with washing urine-soiled sheets and clothing, but now I'm facing the horrors of bowel incontinence and sudden bouts of vomiting.
Husband is now nauseated off and on, and I can't connect it with anything he's eaten, time of day, or meds. He just starts gagging and gesturing for a container and I give it to him and leave the room until he's finished. I can't listen or look or I'll be sick myself. All I can do is bag it up after he's done. Once, he vomited into his cpap mask and I thought I was going to lose it while cleaning it out!
Bowel incontinence started when I woke up at 2:30 AM to a dreadful smell and discovered him, without his undies, standing in his room. There were feces at the top of the stairs and at the bottom of the stairs, along with his cpap mask! When I asked him what was going on, he said he'd been going downstairs to the bathroom. Problem is, the bathroom is upstairs, right across the hall from his room. He was so out of it that we spent the next day - ALL DAY - in the ER where he was diagnosed with UTI delirium. Third one since last October. I had to use another vacation day from work for this.
Since then, the bowel incontinence is here to stay. The toilet gets plugged up unless he continuously flushes as he goes, which he won't. Instead, he tries to plunge the mess and there's filthy water all over the bathroom floor, with my good towels used to mop it up. If I come with him and keep flushing, he threatens to slap me, then slams the door in my face. I've had to clean sticky poop off the toilet seat, wipe up diarrhea puddles on the floor, bag up balls of poop left in the hallway, all the while gagging and almost vomiting from the atrocious smell. Both that and his urine have an overpowering, nauseating stench that is hard to stomach.
One red-letter-day had him making a filthy mess in the bathroom, then falling into my bedroom (the ONE place in the house that I felt completely clean and comfy in) where I quickly stuffed a garbage bag under his butt before he could roll over and smear crap all over my carpet. Once I got him up, he proceeded to vomit into my wastebasket. I had to wash him up in the shower and under no circumstances had I imagined I would ever have to wash an adult man's poopy bottom. I've had to do it twice since then as this appears to be an ongoing issue.
He continues to be non-compliant with his walker, he goes into the basement and washes my good work blouses with bathroom rugs, towels and my sheets on hot water and leaves the whole mess to mildew, he has urinated on two sofa cushions and I have to battle to keep him out of the recliner (the only clean place left for me to sit), he pees on the welcome mat outside the front door and then denies it, he washes dishes I've rinsed and left in the sink to go in the dishwasher using a dirty sponge, and he somehow bent my ironing board by leaning on it or falling on it. Because no walker. EVER.
I'm afraid I'll have a nervous breakdown before they place him. Sorry, just needed to vent in a place where others know what it's like!
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So sorry for all you are having to go through. I hope you find relief soon.
(Lovely dinner conversation, I remember that).
Eventually the body just rejects everything in the gut. And it rages out both ends.
You probably need to get your DH to the hospital if this happens again.
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Wishing you well.
Bowel obstruction can cause both vomiting & incontinence symptoms you described. Even with hospice &/or no invasive treatments common sense must overrule.
If he is distressed or in pain & you as caregiver cannot cope, then action & help is needed.
My husband has Parkinson for over 10 years, although diagnosed once in 2015, then 2016, his GP noticed changes as far as 2013.
And no dementia whatsoever and no incontinence.
But as you know PD comes with so many symptoms that even emotionally and mentally it is exhausting, so I although I have no advice I understand your frustration.
Is it possible to arrange more care for him?
I found helpful having people help with exercise in addition to PT, respite care, PD program.
The foul odor is what made me think of C-diff
It is difficult to treat and it can be transmitted so be very careful.
Wear gloves, mask, if you get any fecal matter on your clothing change.
Talk to his doctor about testing for C-diff
There are plenty of reasons to call 911 and get him to the ER, or doesn't hospice allow that? It seems like if he's vomiting and has diarrhea, that's enough of an issue for him to go to the ER (electrolytes out of balance, dehydrated, or something like that). If you have to take him off hospice to get him in the ER, do it. Then refuse to take him home.
What a horrible situation. I'm so sorry. Your social worker may not have his case at the top of her list of priorities, so you may have to have several irons in the fire to get him placed. ER dump is one. Maybe a different social worker. Please try everything you can to get him placed elsewhere.
Thank you for your update, I wish it could be better for you than it is.
With the severity of what is happening consider calling EMS and then not allowing a return home. They can do SNF or whatever they like, but not return him home.
As to that inability to reply, it seems the admins have moved your update to "discussions" because no real question was involved. In Discussions you reply by simply adding a post as you did.
By the way thanks for updating us and hope you continue to do so. We are interested in this so-tough journey you are making. And thanks for adding to and answering our questions.
And you don't listen to them telling you all that they'll do for you if you take him home(it's all BS). You just stand your ground and tell them NO he cannot come home again ever!!!
I'm betting that after that he will be placed within the week.
I would let his social worker know your exit date, and then I would exit. I think I would resign any POA you have as well, and if you need to do this legally your attorney for your divorce should have no trouble helping you to do this.
Next step is that your husband is a ward of the state. Surely you do not intend to care for him while you are divorced from him? The state will certainly find placement quickly enough, I assure you.
Time to speak of an exit strategy with your attorney. "looking for placement" isn't answer enough. They way to get this done is to remove yourself from the situation. Begin looking for housing for yourself; APS will have to get caregivers in until Social Services finds placement. What happens then as regards your landlord is another question entirely.