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.
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.
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.
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.
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.
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.
(((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.
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.
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.
She has ZERO understanding of her situation and how much work it is to support her.
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
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.
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.
So this appointment is just to be evaluated, not to move in? That is a hard spot.
Maybe be vague about going to a check up. From what you have said, the time for talking with her about memory issues is probably past. It may just make her worried and skittish.
I would make the whole morning as normal and routine as possible. They can’t always figure things out, but they still can read your energy. We got to the point where we didn’t talk about appointments until it was almost time to leave. And when we were moving them, we didn’t say anything about it until they were inside the facility. It was still very, very hard, but it was for the best.
When you are almost to the MC, maybe start talking about old memories in a relaxed way. If she notices something when inside, you can say you are there as an outing to see what the place is like. Hopefully, they will be evaluating on the sly and don’t make her feel like she is under the microscope.
I wish, for your sake, that they were doing evaluation at dr’s office.
”This is not optional.” Keep this front and center in your mind from here on out. If you do have to tell her, be very kind but also matter of fact. We have some things to take care of, Mom. Doctor needs to see you. Later on, you may be here for rehab (or whatever) for a while. We’ll figure it out. No worries. (Even though inside you will feel like you want to vomit.)
You can do this.
Thanks for your help.
I think it sucks that I have to go there too. It's going to be fairly obvious but what can I do? I asked for a home eval but nope.