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Any time I've brought up mom, 79, leaving my home, she gets mad and cries and makes nasty comments. Not fun. She doesn't go ballistic or anything but mad, hurt, weepy and makes tons of snarky comments. Oh the joys.



I know some of you are rolling your eyes and shaking your heads at me. I know, I know, it's past due time for this to happen. In 90% of the time I agree. The rest of the time, I am feeling bad for her and for how the rest of her life is going to be. Dementia sucks big time. I think I'd rather be dead.



So, I asked for an evaluation for the facility to determine if she should go into AL or MC. If they say AL, I'll be shocked but I'll go with what they say at this point. I don't know if they have openings right now so we might have to wait a minute but I'm putting it in motion.



Been having a lot of hard times here. The incontinence (urinary) issues are killing me. And poop on a lot of her washable seat and bed covers. Waaaay above my pay grade. I'm not a nurse and never wanted to be one. This stuff just grosses me out. And stresses me out. I've been using disinfecting wipes everywhere she touches cuz she has no understanding of germs. She was trying to wipe up poop with a chux!! Seriously. So what now I have e-coli potentially EVERYWHERE??!! NOOOOOOO!



My hubby had suggested that maybe we wait until after the holidays. My sister agreed, if possible. But I'm no longer feeling like I can do it and keep my sanity. I've been thinking about all the things I've been giving up. Like being able to go out whenever I want. Go away for a weekend. You know - you just can't do anything spontaneously when you need someone to be with mom.



Now I'm trying to figure out if this goes along quickly (I don't even know if there are currently openings), do I bring her home for the day for Thanksgiving? Christmas? On one hand, I think it could be nice for her. Or will she just be snarky about not being wanted all day?? That kind of crap would really ruin my day. And the rest of the family too.



Next question - I took her for a urodynamic study last week and they suggest a procedure called InterStim (sacral nerve stimulation) - should I even bother to proceed or just blow it off??? In 90% of the people that try this, they get a 50% reduction in leakage and trips to the bathroom. This seems like it would be HUGE improvement for her.

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This is said with love Again; you waited so long to place mom, that now it looks like she'll be needing MC instead of AL which is a different ball of wax entirely. Had you gotten her into AL a few years ago, she'd have segued into MC with no issues. Now, if you wait any longer, she won't even qualify for MC but have to go into a SNF which is an even BIGGER ball of wax than MC! Don't wait another minute to place mom. She'll live through it, crying and complaining & everything, I promise, and you'll both be able to forge your own autonomous lives moving forward once you do.

You will not bring her home for the holidays, but bring the holidays to HER in whatever managed care AL she winds up moving into. We used to cook a lasagna with all the fixings and reserve a private room (like the library) at mom's MC, then take Christmas eve over to her, complete with gifts and everything. She may still be with you for Thanksgiving, so you won't have to figure out how to do that holiday. When mom was in AL, they had a great feast on TG and we'd go there for it, or bring her to our house (which got a lot harder as the years progressed) b/c she lived in managed care for years so going back at the end of the day was no big deal: she wanted to, in fact.

With dementia at play, I think I'd avoid the sacral nerve stimulation that's been suggested to you b/c they seem to have a harder time dealing with such surgical/medical procedures in general. My mother was a nervous wreck on her best day, but add some medical or dental procedure into it, and OMG.

It's time for you to stop having every day of your life ruined while you worry about making life 'nice' for your mom. You've done enough. You've been a great daughter and will continue to BE a great daughter to her once she's living in managed care. There are lots of opportunities to be her advocate PLUS there are TONS of things you'll have to do for her once she's a resident. TRUST ME ON THAT. You're not abandoning the woman..........you're moving her into a higher level of care where she'll have activities and others to socialize with. Change your thinking before you decide the whole move is 'too cruel' which it is NOT at all.

Wishing you the best of luck.
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againx100 Nov 9, 2022
As always, your advice is excellent and very helpful. Thank you!
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If Mom has dementia, please go for memory care. Folks in AL don't want to socialize with someone who doesn't have all their marbles, and it's very isolating. MC is geared toward that, and they'll be focused on mental stimulation, getting her to participate in activities (AL won't do that), and her socialization won't be entirely on her.

Ideally, you want a MC that can take her through the end of life, incontinence and all. They know how to handle it, and you shouldn't want the focus of her care to be her bladder but rather her mental stimulation.
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mom2mepil Nov 16, 2022
This is not for againx100 but for others who may be reading. Just want to mention that some AL’s have a lot of residents with dementia and so there is a lot of socializing among those residents. It really depends upon the current mix of clientele at the facility. My mom, who has mid stage dementia and incontinence, lives in AL and has a whole group of friends there who are similarly cognitively challenged. They spend most of their waking hours together, in one person’s room or another’s, or playing Bingo, hanging out in the “bistro,” etc. Since every lady in Mom’s friend group has trouble holding a thought in her head and remembering where her own apartment is located, they all get a lot of exercise walking around, looking for each other’s rooms. (The building is a big square, so they never get “lost”—they just go around and around until they figure it out.) Mom lives on the first floor, while her friends live on the second floor, so riding up and down the elevator is a big part of their daily activities, too. Mom’s AL also has a MC, but the residents on that floor have quite advanced dementia, and it involves way more care than Mom and her friends need at this point. So ask each facility to recommend where your LO would best fit in. I’m honestly surprised how well this AL does with dementia patients.
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No “bringing home just for the day”. Drop by, cookies, gifties, cards, “see you over the weekend’, hugs, QUICK EXIT.

If you’ve seen enough care settings, there will be holiday decorations, menus, entertainments. If you take her home, she will be more adamant in her refusal to go back.

The bladder issues? I’d wait until she’s adjusted to her surroundings and been in a structured timed toileting program before you move forward with anything else, unless you are pretty sure she’ll get optimum benefit.

These decisions are HARD. You need her to be safe and supervised, and she won’t want to be.

I remember how happy I was when my LO began to refer to her residence as “My hotel”, especially because I knew she meant it.
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Thank you all for your kindness and great advice, as usual. So, a hard NO to coming home for the holidays. Emailed with admissions and going in for an eval Friday and they do have an opening in MC. OMG this is starting to feel real. I'm on the verge of tears because it's so sad to have to do this but I do know that it is time. I'll be leaning on you nice folks for some support. And my hubby will be here for real hugs and wiping my tears away.

Thankfully, my sister is 100% in support of this. I haven't told my kids yet but I'll wait until it's real. It's hard for them to watch their grandma decline and haven't wanted to hear too much about it. They do know that I was going to eventually have to place her somewhere so at least I've prepped them that much. They are adults and they will be able to handle it.

I know the peanut gallery (her brothers and friends from back home for example) are going to be critics but I'll just nicely tell them to pound sand and try not to let it get me toooo pissed off.

I think the confusing thing for outsiders partly revolves around not understanding that there are levels of dementia. You just don't all of a sudden wake up and severe dementia and can't remember your own name. It's a slow steady process, at least in her case. And you don't have to be that severe to be beyond the capabilities of your caregiver either. Just coming up with rebuttals for the crap (even if it's subtle) I will receive. Ahh, the joys.
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Beatty Nov 8, 2022
Typing same time!
(((Hugs)))

Have a big cry! Nothing wrong with that. It's OK to feel the sadness 💙💙💙

Thanksgiving is not here yet.
Take one day at a time until then. Christmas is weeks away yet.
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Again,
As Alva says, this transition is worth grieving. Have that good cry. Maybe, over and over. It really is kind of like a death. Loss for her. Loss for you. Then, grief upon grief, as the dementia advances.

I’m glad that MC is the decision. The incontinence is past the AL stage. In MC, when there are issues, there is someone to notice and take action. In AL, an incident might happen, and someone might not see for hours.

We made the decision for my Mom 2 years ago this December. Thanksgiving was rough here. Mom was deep into dementia, and it was so awkward for us, and for our guests, as well. Christmas was a whole lot more relaxed.

We visited Mom on Christmas Eve, and had Christmas Day with our grandson, who had just turned one. It was a relief to just have a normal day. For you, that would mean a Christmas without dealing with incontinence. Phew. Your Mom will be safer, too, without the mess of it.

Keep coming back here. We will cheer you on, and let you cry, when you need it.

C.
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How about this--"Mom, I have a procedure scheduled, nothing big, but it's going to put me out of commission and prevent me from doing any caregiving for 6 weeks. So you will need to stay elsewhere. I've found a nice place and the process is that they need to see you first".

With my mom, who was living alone, we used coming bad weather as an excuse for moving her into an IndependentLivingfacility "temporarily". By the time Spring came, there was not talk of going back to her home.. I'm a big believer in therapeutic fibs.

Sometimes, the patient needs the fib to hang on to to maintain the whole "independence" thing in their heads. It's like "I'm not old and in need of care-- It's because of XYZ".

Does your mom understand how burnt out you are? Does she show any insight or compassion into YOUR situation? "Mom, I can't do this any more" wasn't an easy convo for me to have, but my mother understood that I was endangering my job and my health with what I was doing.
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againx100 Nov 10, 2022
Thanks for the response. Definitely a good idea to have some fibbing involved.

She has ZERO understanding of her situation and how much work it is to support her.
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I had to place my parents in assisted living almost 4 years ago. They did not have dementia but they were stubborn as heck about going. They both had health emergencies and I scrambled to get them placed in my state 1/2 mile away.

they were not happy at all and I was the evil one. They were severe hoarders and wanted all their stuff etc. I had to clean out the home, sell it, it was a nightmare and I did it all myself.

i packed the bare necessities and brought a few items they loved after they moved in.

as stubborn as they were they both realized that their quality of life improved and they had regular care (it is still a lot of work on you) from me.

You are in a tough position but I would let her know ahead of time there is an evaluation being done and go from there. She wont be happy and it will be a tough transition but she will adjust just as my parents did. They actually ended up appreciating the effort I put in and still do for my Mom. Dad passed last year
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BarbD25 Nov 10, 2022
I am moving my mom now across the country. I can only ship her clothing. May I ask if you had an estate sale and how that works? Thank you.
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My Mom had InterStim. She was about 83 and in good health. It helped slightly, It helped some with frequency, but did NOT help with urgency or leaking. It has to be reprogrammed or turned up and down fairly often. My Mom couldn't do by herself. I had to help her and considered it a total nuisance. So did she. Battery had to be replaced after 2 years. This is a surgical procedure. Supposed to be quick. But, scar tissue had formed around the unit and the battery could not be replaced. It had to be taken out and a new one implanted. What should have taken about a half an hour out patient, turned out to be about 3 hours and an overnight stay in a room at a surgery center. My mom had great service from the Inter Stem technician when she called. But. the technician said her calls and issues were common. She went to very good urology practice at the University of Cincinnati who were very honest about the results they had with other patients. They told her upfront the results were mixed. They did not push for her to do the device. She had had previous sling surgery which gave her better results. Mom had excellent insurance and they paid all of first surgery, along with some Medicare payment.. It was incredibly expensive.

Mom was traveling a great deal at that time. Going thru airport security was bad. Having to explain to TSA in a busy airport why you just can't walk thru. It makes metal detector alarms go off. She actually had to go in a separate area and show them her surgical scar and let some TSA woman feel the implant under her skin.

When she needed a new battery the next time she declined and subsequently had the device removed - another surgery.

She found it much easier to use Depends. If I had the same problem, I would not consider having the device implant done.
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poodledoodle Nov 8, 2022
Good warning!
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Again,

We told my mother that she was moving to a place that would help her to be not so afraid any longer. A place where there would always be someone right there to help her.

There may be something like that , that would help her understand.

And, as I tell my daughters, just because something is hard, doesn’t mean that it’s not necessary.

It will be hard. Guaranteed. But, you will be okay. We are here for you.
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againx100 Nov 10, 2022
You are right, of course. Necessary things can be hard. Here's proof of that! I will be OK in the long run. I'll be back complaining again - oh I mean updating you all. You can count on that. Maybe after the evaluation tomorrow. DREADING it.

Actually I have come up with an idea of what to say as to why she's moving out. We want to sell our house to downsize for retirement and can't do that with our current living arrangement. There's a lot of work to do on the house and tons of crap to be cleared out (not hoarders, just too much stuff!).

And that I want to be her daughter not her caregiver.
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First and foremost, heed Ann's advice and DO NOT bring her home for the day.

Just shrug off her anger, there's no avoiding it, but you need not let it bother you.

The line in the sand to be placed in a facility is unmanaged incontinence, so you're making the right call.
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