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.
I say, get your Mom into somewhere as soon as you can. It doesn't matter if it is AL or MC. Places will evaluate and make their own decision whether it is AL or MC at their place.
The incontinence and denial of the incontinence was part of my Mom's dementia. She couldn't tell or didn't remember that she had gone to the toilet. One of the caregivers recorded her going to the toilet over 30x in 7 hours at night. No UTI, she just thought she needed to go. It messed up her sleep too. And because she had the potential to fall, each time she went to the bathroom, the caregiver had to assist her to/from the bathroom. We couldn't figure out how liquid got on the floor or chairs, even though she wore Depends that were dry. We could not retain caregivers due to the nighttime activity, and other more minor issues.
The way I did the move is that I blamed her going to the MC on me. I told her that "I could no longer take care of her". And I repeated it over and over and over again. And told everyone to tell her that I could no longer take care of her. Whenever some well meaning person would say oh that is too bad, she would ask them if they would take care of her and of course they would say no, especially after she told them that she had a hard time keeping the same caregiver at night.
From the time I selected a place, to the time I could move her in, the process took about 1.5 months due to all the forms, doctor's visits, home visits, TB test, etc. I suggest you start doing your research and put in a down payment now as it probably will be after the beginning of the year when she will be physically there.
As for taking her home, I was worried about that also so I made sure she didn't go back into her condo after she left it. When she moved into MC, we made sure the MC room had all the important pictures from her bedroom and hallway, and some of her bedroom furniture so that the room really looked like hers. After 1.5 months, she begged to take a look at her "old home", and my sister took her. When she went back to her "home" of over 20 years, she said that she wanted to go back to the MC unit as it felt strange (she even looked into the drawers and saw that there was different stuff in it than she remembered).
Prior to the move, I marketed her stay at the MC to say that it was a way to get reliable and responsible night care. MC for me is the ability to have reliable and caring facility to take care of my Mom, especially for those incontinence and night time visits to the bathroom. Currently, I DO see her everyday and I DO take her out with me on appointments and errands like we used to. I DO bring her her outside food. I DO work with her on her exercises.
It is all about how you and others sell the future to your Mom. Don't promise what you cannot keep. If she really has dementia, she cannot accurately remember from one week to the next, but she will remember broken promises. (I've been told that negative thoughts and actions are easier to remember than positive ones.) You do have to save yourself if you are going to provide a good environment for your Mom in the future.
I think the “when” question is answered first by how long your mother’s memory is.
If telling her a few days before will help her acclimate to the idea, then that is a good choice.
If she will forget your “prep talk” by the next day, I’d wait till the morning of the move.
When we moved my mother, I packed her things, and my husband kept her busy for the hours it took for the movers to move her furniture. It would have been too anxiety-producing for her to watch all of the changes happening.
Keep us posted on your next steps. 😎
How goes the transition?
Has the evaluation been completed?How did it go, for each of you?
So, Friday I gave a vague explanation of the appt I was taking her to, about 30 minutes before we had to leave. I just something like "We're going to get an evaluation about your memory issues.". She only asked me one question on the way there and I was able to give another vague answer and that was that. Whew, I was feeling pretty lucky. And I was nervous and chatted my head off which is out of character for me but I didn't want more questions!
The evaluation went well. There were only a few questions that I thought she might get suspicious of like "Do you have any food allergies?". She did fine in the eval except for knowing where she was. She really didn't know where she was cuz I didn't tell her the name of the facility. She didn't know the town, which she could have if she'd paid attention on the drive. But not knowing the state she was in was a little surprising. She listed a neighboring state that she has NEVER lived in. Oh well.
So, I was pleasantly surprised after the visit to learn that the director and the evaluator agree that assisted living is the best fit. I thought it was a little early for MC but feared that that would be their answer. A unit should be open in the next couple of weeks.
Now I'm deciding when to tell her. It will be VERY close to the move, for sure. Or do I even tell her to give her time to get used to the idea? The day before? An hour before we leave? Ugh so many hard decisions. I hate not being able to decide what's best because believe it or not, I am usually very good at making decisions!
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.
As to the procedure, I am uncertain what to tell you as a friend had this procedure or one similar years ago when this was new and experimental, and she has actual electrodes causing problems in her lower limbs that cannot be removed. I am uncertain the details.
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
You know you're going to have to take the heat that comes with placing her and it's going to get hot, my friend. You already know this and I'm sure are prepared for it. Be strong and just do wht you know you have to do. She's going to fight you on it beause she wants to stay at your house. If she refuses to help you go through her stuff and pack up, just go right ahead and do it. Tell her that you may be throwing things away that she wants to keep if she won't help. Make offers to take her to visit the AL she's going to. Tell her it will be easier when she moves there if she gets famillar with it and meets the staff. If she refuses, let her know it's going to be all the harder on her the day she leaves your place.
As for bringing her home for the holidays, I wouldn't if you're placing her now because the holidays are right around the corner. She will not have had enough time to acclimate to the AL she's moved into and will not consider it her home if she's only been there for a little while. Guaranteed she will ruin the holidays for everyone if you take her out of the AL for them.
What you and your family can do is have these holidays with her at the AL. It doesn't have to be on the actual holiday. It can be the next day or any other day.
As for the surgery to reduce the urinary incontinence and trips to the bathroom, don't do it yet. Try medication first and there is medication now that does help.
I'm not going to the surgery. She's been on overactive bladder medication and it is not helping at all. (I guess it can take time but it's been about 6 weeks) Nor is the pessary or the estrogen ring. I guess it's just the way it's going to be. Her pullups with a pad in it are containing 90% of her pee so I guess that's not so terrible, especially for a facility to deal with. It's bad but I bet there's worse too.
I know that sounds bad. Dementia flips us into bizzaro world. You have to handle situations in ways that you would *never* do when someone is healthy.
And moving quickly now that you have started is a good idea. So is getting this done before the holidays. Holidays can be lovely, but with dementia, there is a danger of sentimentalizing them to the detriment of making good decisions.
Thanks for your advice and understanding.
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.
I wouldn't mention it too early.. maybe just carry on with the getting ready & then "let's go". Where? "To that appointment with *insert a name*. I mentioned it last week, well I think I did. Anyway let's go".
Hopefully others can add to or improve this?
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.
The Atria nearest me is being criminally investigated for feeding three of their mc patients cleaner instead of juice. Two died…but they have a beautiful entryway, marketed to be like a hotel.
Right down the street is an mc that is just an mc. Compared to the Atria, it’s rather dowdy. Residents don’t even have showers in their room, but it is one of the highest rated in the area. One reviewer opined how surprised she was to not have to hire private aides. Nor did she have to pay staff more as mom progressed…whereas Atrias and Brookdales are notorious for demanding both.
This mc is also about half the price, too.
The questions will start - "I didn't know I had an appointment!"
"Where?" + "why?" + +++++++
I guess I could say "It's for an evaluation about your short term memory issues".
But once we enter the facility, it will be obvious that this is not like going to the doctor's office. She will know it's a nursing home type of place.
Is there any benefit to telling her earlier than when it's time to leave? I'm worried she'll just be mad and making a big stink about it and maybe refuse to go. She also won't like being blindsided. So do I just be honest and tell her something about it being high time for her to move out and this is the best place in town?? Ugh. I'm not looking forward to this part of the journey AT ALL.
I will do my best NOT to run back and forth too often. Some days I am just too busy and I do NOT want to set up a bad habit of going every day.
She's been wearing pullups for YEARS. Life would be completely intolerable without them!
Decided against the surgery.
Please remain open to the idea that your mom may actually enjoy being in MC and having a wider circle of folks (both staff and residents) to interact with.
(((Hugs)))
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.
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.
Looking for a new home for a parent may not be wanted. But may be needed. May be the best recommended option.
I guess any anger is like a side effect you don't want. It comes with the medicine. But the medicine is still needed.
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.
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 said: "Any time I've brought up mom, 79, leaving my home, she gets mad and cries..."
You then asked: "do I bring her home for the day for Thanksgiving? Christmas?"
Where does she live? With whom?
Good luck OP with all this (facility vs. no facility) (bringing her home vs. not bringing her home). It’s very tough. I’ve read many of your posts, OP. You’re always a kind, nice, wise person. Trust your gut.
https://www.nbt.nhs.uk/bristol-urological-institute/urology-patient-services/urology-patient-information/sacral-neuromodulation
Have a read and see if you still think it's a) appropriate and b) feasible for her. What does she think about what she's been told so far? Is she up for it? Only I can't see it working in a person who needs continual prompting or repeated explanation, is the thing.
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.
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.
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.