Nighttime toilet issues

sandyeigo

Looking for some creative ideas cause I am at my wits end. My mil has been living with us for a year. Diagnosed with FTD about 5 years ago. Still does well during the day, no longer remembers/understands she has dementia.

About 6 months ago I started finding wads of wet tissue stuffed under furniture. When asked she claimed she was cleaning up spill. I suspected she was urinating somewhere in her room but had not proof or confirmation. Then I walked in one morning to her cleaning feces out of her trash can into the toilet with her bare hands. Got her and house cleaned up and ordered a commode for her bedroom. She used it normally the first few times, now she is back to trying to clean it out herself in the middle of the night with tissues and her bare hands and hiding the evidence in her room. DH then purchased commode liners thinking that would stop her from trying to clean it out. We also has a urine test to rule out uti which came back negative. Then we had this morning where woke up to her repeatedly going in and out of her room to the bathroom and seeing her on the camera in her room scooping the contents of the liner (which turns into a gel when wet) out of the commode and walking handfuls of it over to the bathroom. Gel, feces, urine everywhere. I’m at my wits end. Cognitively I don’t feel like she is ready for memory care. I’m home most days and she does pretty well. We have a caregiver who comes on afternoons I work. DH and SIL both work full time and are not much help. Words are getting harder and she is having more difficulty expressing herself but overall she is pretty easy to deal with during the day but I am not prepared for the sleep disruptions and I hate feeling like my house is a hazmat site. DH has a 1.5 hour commute for work each way so it’s not something I can ask him for help with as he is already dealing with his own sleep issues. I know she is going to respond very poorly to a care facility and I hate to do that to her now but I am struggling to find ways to make these nighttime toilet issues manageable. Any ideas? I have seen the onsie pajamas with a zip back. Maybe one of those and an adult diaper where she has to come to me for help? Just trying to keep her comfortable in a home environment as long as I can. I know eventually this will surpass what I have the capacity to deal with but I just don’t think she’s there yet.

ladyzetta

Sandyeigo.

I'm sorry to say, but this is something that won't get better, it will continue and possibly get worse. Im thinking 🤔 MC, is in the near future. She won't be happy, most aren't. This is when I placed my DH. I knew i was not able to give him the care he needed. You also need to take care of yourself.

You have come to the right place, for people caring, im sure more comments will follow. Hugs Zetta

H1235

So sorry you find yourself in this difficult situation. I’m sorry, I have no suggestions. Keep in mind there can be a waiting list at some facilities. Even if you can overcome this hurdle the time will eventually come when a facility is necessary. It might be a good idea to have a solid plan B in place. The time may come sooner than you want to admit.

Iris L.

A bed alarm so you will know when she gets up.

Or, a nighttime caregiver just for bathroom visits?

Iris

sandyeigo

https://alzconnected.org/discussion/comment/254599#Comment_254599

I just read about bed alarms. Something I need to investigate further and definitely a good idea.

Nighttime caregiver has been suggested by my sil. The caregiver issue was a tough one to get my DH on board with. Does not like the idea of strangers having access to our house. Frankly neither do I but we had no other options. So I expect he is not going to be too excited about the possibility of someone here at night. We also had a difficult time with my mil regarding caregivers during the daytime, she does not understand the necessity, and has been very upset about the possibility that someone would be “moving in” to help us. Ultimately not her decision but there are other factors that make it not preferable. Including the fact that our home is very small. Only 2 small bedrooms so we’re all kind of on top of each other with just the 3 of us.

sandyeigo

https://alzconnected.org/discussion/comment/254595#Comment_254595

Thanks, yes, we know. My DH has already done some research on that end. Honestly it’s usually me pumping the brakes on it. But it may be time to revisit.

SDianeL

welcome. The only option is to help her toilet each time. A bed alarm may help if you can get to her in time. Get a bidet for the toilet so you can clean her unless you prefer to use the commode. There is a toileting video for dementia caregivers online. I don’t remember if it was Teepa Snow or Tam Commings who made the video. Also if you haven’t done so, read the book “The 36 Hour Day”

terei

Excuse me? I suspect if it was your H that was dealing with this 100% for a couple days that his perspective would change about how it should be addressed. The fact is if you dressed her with a diaper + clothing that cant be removed, she would still be disrupting your sleep multiple times a night. Ultimately, one person is not capable of of caregiving 24/7 without coming to a breaking point.

sandyeigo

https://alzconnected.org/discussion/comment/254690#Comment_254690

Agreed, it’s going to be a huge disruption to my sleep. My DH’s solution is actually that we need to start looking into moving her to a memory care facility. Which is heartbreaking as I know she will not do well with the changes. We knew there was going to come a time when her needs exceeded what we had the bandwidth to do. I just didn’t think it would be so soon.
His sister and her daughters are going to take it particularly hard. Despite the fact that she has always been very adamant that she cannot take on the responsibility of taking her in and providing the necessary care.
None of it is easy and I am very conflicted about the decision but I also know my own limitations as well as my husband’s. I honestly read through what some folks are managing in their own homes and I am amazed by what they go through to keep their loved ones home. I really don’t know how they do it.

towhee

The choices are hard. This issue is what sent my LO to memory care. They put her on medication to make her sleep and put her in briefs. It is a trade off, the medication made her more of a fall risk if she did not sleep for 9 or 10 hours.

Curbside

https://alzconnected.org/discussion/74206/nighttime-toilet-issues

DH? Buck&Buck is the way to go when it starts out.

JDancer

https://alzconnected.org/discussion/comment/254603#Comment_254603

I recently purchased a bed alarm with a pager. The pager can be set to alarm or vibrate, I've been very happy with it, but it does limit my sleep. If a caregiver had the pager, they wouldn't need to be in the same room until your MIL tried to get out of bed.