Fearing the incontinence stage

LittleVolcano

I feel like a jerk saying this, but I'm really fearing the incontinence stage if/when my mother gets there. Right now, she can still manage her ADL quite well, but if she starts needing help toileting or starts having accidents (or needing help bathing), I don't know if I can handle it.

I'm the secondary caregiver, my father is the primary, but Mom rarely knows who he is and I doubt she will let him help with something so intimate. Mom still knows me and trusts me unquestionably, but I'm squeamish, have a little bit of a gag reflex, and am not comfortable touching people, even my mother who I love with all my being, in any manner more intimate than a hug. 

And I know Mom wouldn't accept or be comfortable with a health aide. Maybe that will change in the future, but I doubt it.

Any words of wisdom here? Is there anyone who's LO never got to this stage? Mom is at home and we want to keep her here unless she becomes a danger to others or herself, and she's nowhere near that kind of behavior. 

star26

Everyone will adapt if and when it happens. Unless she dies of something else first, I'd say help with bathing is probably unavoidable. She'll adjust to an aide and/or you can keep her covered and use a big poof for sudsing up and a handheld sprayer. Incontinence doesn't happen with everyone and if it does happen, it may just be occasional urinary incontinence. You'll get her some cute Depends or Always underwear or pads. You can add a bidet to the toilet and turn a switch in lieu of wiping after #2.  Believe me, if it's just you and her and an accident happens, you will deal with it and probably keep your cool. #1 Because it needs to be done right then and no one else is around and #2 Because you don't want to make your Mom feel bad by acting like it's gross or a big deal. Your strong love for her will rise to the challenge!  And if all this just turns out to be more than you and your Dad can bear, you may consider placing her in a facility instead. It's a common reason for placement. Home Aides can take care of showering, but if she needs help with toileting you can't really get around doing that yourself unless you have aides 24/7.  It's good to consider what might happen, but try not to worry about a problem that's not here now and may never come. And you're not a jerk for feeling this way. This is a challenge for many of us.

LittleVolcano

Hi Star, thanks for the reassurance. I like the way you framed everything. My gut is telling me that I'll rise to the occasion (I have so far, and have surprised myself in a good way). And, yes, most of the time I stay here and now, but this one keeps haunting me. But I think you're right. I think my protective nature will kick in and I'll get done what needs to get done. I'm fiercely protective of my family, so if they need help, I act without thought for myself. When the time comes, I feel that will kick in and I'll do a great job. And knowing me and Mom, we'll somehow get a laugh out of it, because that's what we do. Luckily her sense of humor is stronger than this disease.

Thanks for the pep talk and the suggestions. And thanks for helping me remember how strong I am when the chips are down. It was a nice aha moment to think back and realize that, with the more serious stuff, caregiving tends to come naturally and fearlessly. So, yes, there's no point in being afraid now, because if the time comes, I'll probably be too concerned that Mom is clean, comfortable, and healthy to even bother considering how I feel about the whole thing. I'll just focus on that instead. 

Thanks again for helping steer my train of thought in the right direction.

Cynbar

I also was one of those people who thought I could never, ever help my DH if he became incontinent. Well, I'm happy to say that I was wrong. It started gradually, not all at once, and when the time came I just did it. He's not fully incontinent, wears Depends but sometimes has accidents and needs some help. It's now no big deal. I think the above poster is right, your love for your mother will win out. And I do think your mother will accept an aide in time, most everyone does, and the aides are very professional and kind in their approach. But it is not a bad idea to talk to your dad about what the plan will be going forward, because dementia is a progressive disease and is bound to get worse. Are you two determined to keep her home, or do you think a facility may be needed at some point? Finances are a big part of this, you need to know what they have to spend towards care so you'll be prepared. Too many people don't address this and then are faced with a crisis and no plans made, which can be a nightmare. This is something for a whole other topic, but you'll get a lot of good advice here as you slowly start to consider your options. Good luck.

Jane Smith

Little Volcano, first I just want to say that you do NOT sound like a jerk.  You sound like a person who cares for someone with dementia, which is an awful, all-consuming, terrible disease where the goalposts are always moving.

The only thing you can count on with dementia is that things are always changing. While I agree it’s good to plan for what you can, none of us, no matter how much experience we have, can predict exactly what is going to happen and when.  We all get surprised by this disease. 

If I could make a suggestion that you try to be open to the possibilities?  Yes, it’s possible that incontinence will show up and you will be grossed out. But it’s also possible that it will be okay.  It’s possible your mom won’t accept help, but before you make that decision and don’t try, remember it’s possible it could work out. 

I never thought I would be able to get help for my mother, or that she could live in a facility and have it work out, or that she would stop smoking, or that she would make a friend in assisted living, or that she would survive Covid. But it worked out.  It all worked out, often in ways I didn’t expect or could have been open to. 

(And on a practical note, for toileting cleanup, consider double gloving and having supplies in easy reach. If you double glove you can take off the soiled ones and still have gloves on underneath.)

Hang in there.

RanchersWife

You have to tell yourself that you will not be the kind of person who would leave their mother to sit in her own filth. You will make sure she’s clean, dressed well and looks good. Then after the job is done you take pride in your loving care of her. People who truly love preserve human dignity. Don’t beat yourself up over your feelings when you are doing the cleanup. It’s hard. The words “slightly traumatic” come to mind. It will change you and you will become stronger and a better person. It does get easier. Come here to vent because sometimes we have to tell someone what we’ve been through...even it is just all the bodily functions happing in the shower at the same time.

feudman

Asking "what will I do about incontinence?" is a lot like asking "what will I do about seasickness?" A good answer to both questions is "Dont worry; you'll do it." 

As to the modesty aspect, it's probably easier for caregivers of the same sex, but it usually helps to keep a sense of humor. With my DW (whose nickname was "Wooz") I would ask "are you a wet Wooz, or a brown Wooz?" It always made her chuckle and put her at ease. 

I had friends with no actual experience tell me: "oh, that would be the line in the sand for me." Maybe if you dread it enough, you will make it so. But I'm sure glad it wasn't for me...we still had some memorable times living together after cruising past this minor milestone.

Kath50

Invest in latex gloves. I use them for my mom’s showering and washing her hair some days over the sink. I also use them when I give her pedicures. Even if she needs lotion, I glove up. It makes me more comfortable and she doesn’t give it a second thought.

She wears assurance and has had incontinence for awhile now. For extra protection, she also wears a poise overnight pad inside of it. It really helps for overnights! 

I was wiping her after a fall and hospital stay but one day she started wiping herself after remembering I guess. I have to still supervise but it’s now all part of our new norm.  

It’s not easy but it’ll fall into place. 

I also breathe through my mouth when I’m in the bathroom with her and when she’s not looking, I spray my Scentsy. 

LittleVolcano

Thanks for the reassurance and tips everyone. I think I'll be fine now if/when the time comes. My Dad and I really do want to keep Mom at home if possible, and as long as Mom isn't a danger to herself or others, then we'll make it work (and if it turns out that AL is better for her, we have enough resources to make it happen). I've got two very caring brothers as well, so the help is there (I just happen to be the one with no kids and lots of work flexibility, so I'm second on the frontline behind Dad, and once my husband and I move closer, Dad and I will be co-primaries). Yeah, it still makes me nervous, but we're not there yet, so I'll let it go for now. It was just good to talk about it and help me do some mental planning.

In funny-ish news, I never thought that dealing with the disease's rudeness would be a blessing compared to this uncomfortable topic. That's also one thing I have to remember (that it can be much worse, and try to see the current hard stage as actually a quite easy stage, even if it doesn't feel like it at the time).

Thanks to everyone for improving my perspective. This disease is such a head-[spinner] for everyone involved. (ha, it's so hard not to swear in the forum sometimes, but I'm trying to be respectful of everyone's varied tolerance for such language. )

Big hugs to everyone. You/We are all amazing people for how we care for our loved ones. And, yes, it's worth the struggle.