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Mom’s hospice nurse called me today. Mom is beginning to have an issue with double incontinence. I have zero experience in this area.



Hospice will let Mom’s MC know, and will make sure it’s on her chart.



I have emailed the DON and asked about procedures for her facility.



In the meantime, what have your experiences been?



Mom is ambulatory, but I don’t think she can manage to get herself cleaned up after a bowel episode. I don’t think she will ask for help, either. I also imagine that she will give the caregivers a big problem, if they attempt to get her cleaned up.



So, some questions come to mind. How often did your Loved Ones get checked?



How often did your Loved One get changed?



What on earth did you do about getting your loved one to allow the caregivers to help?



I will remove Mom’s regular underwear, so that Mom will hopefully use the pull-ups. She is NOT going to be happy.



This is so very hard. My stomach hurts, just thinking about dealing with this. Big sigh.



And, as always, a big thanks to you all.

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Hospice should work together with the memory care on this issue and you shouldn't have to do ANYTHING. You shouldn't have to buy anything, wash anything, worry about anything, nothing. I assure you this is not the first case of double incontinence they've run into! In mom's MC, they had her on a 2 hour toileting schedule. They'd come get her from whatever she was doing, every 2 hours, and take her to the water closet for a Depends check and to see if she needed to use the toilet.

Once her underwear is removed, mom will have no other choice but to use the pull ups. If she's angry or agitated, hospice can handle that too.

Hospice provided my mother with ALL of her lotions, potions, barrier creams, chucks, pads, everything.

When I worked at the memory care AL in 2020, we had a few residents who screamed bloody murder when it was time to get changed. The caregivers changed them and cleaned them up ANYWAY. It's part of the job. The residents have good days and bad days with the behavioral issues AND with the incontinence issues. She'll be fine, your mom. If things get very bad with her agitation, the nurse can increase her Ativan a bit to calm her down. Comfort is the name of the game.

Try not to internalize this too much. Leave the matter in the hands of the MC and the hospice team to handle for you.

Sending you a hug and a prayer for peace
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Do not stress or overthink this. MC staff deal with double incontinence every day.

I did a work placement in a Memory Care with a full range of patients. It was a small very caring place with wonderful staff. They knew each resident well & had a range of tactics to try if the first attempt failed. Residents had a wide range of levels, skills & behaviour - from mobile & chatty, withdrawn with angry outbursts, inappropriate behaviour & extremely stiff with Parkinson's. All were changed on regular schedules but also extra checks & as required for bowel. All had intact skin & were kept clean that I saw.

It may not be perfect everyday, but will be ok.
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She'll go into diapers, not Pull-ups and they'll take her to the bathroom every couple of hours. She'll likely have few accidents because they do a good job getting them on a schedule. Because she's ambulatory, they'll have her sit on the toilet while they change her and she'll probably go then. If not, they'll have her hold onto the grab bars next to the toilet while they clean her up, get new pants on her, and she'll be good to go.

The caregivers look at ghanging diapers as no more of an event than changing clothes, so it'll be OK. When your mom sees that they aren't making a bid deal of it, she probably won't either.
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Your Mom should be changed and cleaned up at least fives times a day. Hospice are kind and gentle people. They will help her get accustomed to the new way of doing things. They will also help by using a barrier ointment to protect her skin. She will eventually get more comfortable with the process.
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In memory care my mom did know when she had to go, but couldn't find a toilet. When she wasn't making it to the toilet, they put her on "full toileting" with pull-ups always, taking her every 2 hours to her bathroom during the day and once during the night, and cleaning her if there was an accident. They did this on their own. I didn't have to order it, only found out one day while visiting. They were very sweet with her when I watched several times, talked about other things to keep her distracted and kept her hands out of the process by giving her a doll to look at while cleaning her. I did it myself often when I saw they were busy and it seemed an emergency situation. She was embarrassed at first, then accepted it. They removed all her paper products from her bathroom because she'd use too much and they removed soap too because she was eating it. Even with all that, when I had to move her to nursing home, I had to throw her chair away because it smelled of urine. And really, the memory care my mom was in was really nice, but the incontinence is very difficult to handle. It seems no matter what there is going to urine and poop on things.
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BurntCaregiver Apr 2022
There doesn't have to be urine and poop on things in any facility. If housekeeping did it's job properly and things like furniture had protection pads on it, there wouldn't ne such a problem.
People have an adverse reaction to using actual diapers on an adult. Sometimes you also need to put a urine pad in the diaper too. Pull-ups are really not for incontinence. They're more of a precaution for a person who still has sense enough to use a bathroom but maybe can't always get there in time.
I had a client who used to get fixated on getting in her diaper. We used to duct tape the diaper so she couldn't get in it. When she needed to be changed, we cut the duct tape off with a pair of round-end bandage scissors.
There are ways to keep urine and crap off of furniture and to also keep incontinent people clean. It just takes more work.
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Have the staff remove her underwear and give her the pullups. Then it doesn't have to be between you two. I think she could very well accept the help from the staff. You should have NOTHING to do with it.
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cxmoody Apr 2022
Thanks. I will ask about that very good suggestion!
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The facility may reassess her care needs and add a charge for more frequent toileting, or needing 2 people to assist her.
Just pull-ups in her closet.
If you are ok to shop online, search for 'washable incontinence pads" You may have to take them home to bathe them, but they work better than the disposal paper ones with a plastic liner.
Ask hospice if they provide a no rinse skin cleanser for the perineal area, and a barrier cream to protect her skin. Sometimes a memory care has a preferred product, so that can make it easier.
Hopefully the memory care staff and hospice staff can collaborate on this. Won't be perfect, though.
Your mother will be angry. Best that you not try to toilet her or go with her when an aide takes her to the toilet. Go out for a walk, come back in 15-20 min.
Being a witness to her distress will be very upsetting (naturally) but she will adjust to having help with toileting fairly soon.
Take care.
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If your mother is incontinent both ways the time for a pull-up has since past. Pull-ups are useless for people who are fully incontinent. All they can help with at this point is making a bigger mess that will have to be cleaned.
Your mother needs to be in a diaper with adjustable tabs.
Normally a person is supposed to be toileted every two hours. Of course it could be more frequently as needed. Your nose will always let you know when someone needs to be toileted more frequently.
Your mother has no choice but to accept caregiver assistance if she can't do for herself in the bathroom on her own. It's all about the approach.
The aide should tell her that they're going to help her get to the bathroom. They check her diaper and if she's clean they can leave and give her some privacy. Then go in to help wash up if necessary.
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cxmoody: I was my mother's live in caregiver from out of state in her home. She knew that she had urine incontinence, but she did not realize that she also suffered from bowel incontinence. She was waiting far too long to get moving on her walker to make it to the toilet in time. Ergo, I was wiping up the bathroom floor daily. She also chose to rewear slacks, aka pants, by draping them on a chair next to her bed. I snuck in to her bedroom every night to launder them.
Your mother's Memory Care facility no doubt deals with double incontinence routinely. Prayers and hugs sent.
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Burnt,
Ohhhhh! I appreciate that detail about the diaper with the pull-tabs! Wowza! I hadn’t even thought of that!
Eeeek. And, I just want to cry. This is all so sad.
Grief, like Alva reminds us. One grief after another.
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BurntCaregiver Apr 2022
CX,

I know. It is one grief after another, but what can we do? L'chaim (to life). It's one day at a time when you're dealing with addiction and elderly people.
It's trial and error too. I've been in caregiving a long time and I know what works and what doesn't.
I always lined an adult diaper with a trimmed down baby one for the overnights. Baby diapers are paper thin too. They hold a lot and the surface stays dry. One of those lining a diaper and it helps to keep the person dry.
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