For background: I'm an only child dealing with a 77 y.o. mother who has mid-late stage diagnosed dementia. I've had to turn her into the DMV, so she no longer drives. I've been bringing her groceries weekly as well as filling her weekly pillboxes. She's fully dependent on me to call her daily to remind her to take meds and eat. I walk her through how to make simple food in the microwave. I had to take her modem and unplug her stove on Christmas eve (she's burnt SO many pans). When we arrived she told me that she was on the computer talking to someone who passed away years ago. She has yet to mention either of these changes, ironically.
Utimately though, my question is HOW can I move her into a memory care facility? I have a care coordinator helping me locate a good location for her (safe, good staff to patient ratios, etc) and I'm in the process of selecting and touring facilites. But she is fully unwilling to move. I've tried reasoning with her and explaining that I feel I can't even go away for the weekend in case something happens to her (she's locked herself out MANY times), walked to McDonald's in the dark, etc. She has no concept of any of the things that I do for her and I'm reaching maximum caregiver burnout.
She has a follow up appointment with neurology in February. Is there any way that they can help force her to move? I know if she ends up in the ER they often will not release a patient with dementia back to live alone at home. But do I need to wait for her to hurt herself in order for this to happen? She has the financial means to move, she just doesn't want to. And there is NO way I would have her move in with me. I know that may sound mean, but I need to have my own life that is not inclusive of being a full time caregiver. Any advice is welcome as she really shouldn't be living alone, but short of tricking her in some way, I can't think of a way to get her out of her house.
Which then, brings you to how to get her moved. If she isn't willing to be moved, which I am guessing she isn't since this is what I had to deal with my own mother, you have two choices - leave her where she is, where her abilities are compromised and she could be a danger to herself and others, or get her moved. But it isn't going to be pleasant or easy.
You could contact her doctor and speak to them about enlisting their help (they could contact social services/adult protective services). Or you could. Because then the only other way is yes, you would have to wait for her to cause harm to herself and end up in the ER where they won't let her go back to living alone. This as what happened to my 95 yo mother who refused, continually refused to even consider moving the AL. Even though I showed up weekly with groceries, laid out her meds in the pill boxes, picked up her rx, took her to doc appts, etc...she got to the point where she wasn't eating right (cookies, candy and ice cream), not sleeping because her dementia was causing her to hallucinate (and yes, the local police were summoned on several occasions because of 'someone out there trying to break in'--- not), etc. I couldn't be with her 24/7 and would get phone calls at all hours of day and night (she even had 4 news anchors from CNN in her living room one night having a discussion about world affairs .....yuup, sure they were..sigh).
Things finally changed when she fell trying to get out of her recliner and fell, breaking her femur by the hip...off to ER and no more going home- ever. But the fall resulted in her passing 8 weeks later. But she admitted that she shouldn't have been so stubborn and 'should' have moved to AL a 'few years' earlier to that 'nice place' we toured and had lunch at. Too late.
I tried. I tried oh so hard and for oh so long. But I couldn't never change her or how she was or thought. I 'should' have just forced the move and then dealt with her anger but at least she would have been in a safer environment. Hindsight.
I think my mom would also feel the same and would enjoy a new place and being around people and having activities available. She's just very stubborn, in denial regarding what is going on with her, and doesn't like change.
I did just recently get ahold of an eldercare atty and my mom signed the POA. I am legally able to make financial decisions for her, but I'm pretty I don't have full say over her healthcare.
I located a Dr a few years ago for her and I've been taking her to all her appointments as well as a recent neurology appt so that we could get a true dementia diagnosis. None of this information lasts long in her brain though and then she's back into denial mode (this could also just be a feature of the dementia). Both doctors have told her that they think she's unsafe living at home and that she either needs in home care or to move, but she doesn't listen.
My new plan is to start taking tours so I can locate a place for her to land (whenever that is). She has a follow up appt with neurology where I'm sure they will tell her again that it's unsafe for her to live alone. I'm going to really double down at that appointment and also let her know that I think it's unsafe for her to be at home. At that point I'm going to try to time it so that she could quickly transition to this new place and just keep reiterating what the doctor's have told her. I may need to fib a bit and let her know it's just a trial run to see if she likes it, so she feels like she has some agency. Once she's there for a bit I think she'd likely forget how she got there and start making friends and feeling more content.
Pharmacies can provide pre-sorted blister packs.
There are all sorts of ways to set up medication prompts.
Your being on hand holding your breath and standing by hasn't prevented her from locking herself out and walking to McDonalds in the dark - you might just as well have gone away for the weekend, no?
The thing is. There is more than one thing here.
1. You burning out. If you break down what you do into tasks, routines, services, you'll find that most of it can be done by somebody else or in some other way. There will be many solutions to help you step back and do less, if that will help. But from your description I don't think it's the workload so much as the stress and anxiety and constant heart in your mouth anticipation of disaster that's getting to you?
2. Sustainability. At the moment your mother can live at home because you are propping her up there. If you step away wham! - just like that - she will fall flat on her face. She won't be able to prepare meals, she may start forgetting to eat and drink altogether even assuming food is delivered, she'll regularly lock herself out, she won't take her medications or (God forbid) she may repeatedly take her medications. Of course you aren't even thinking of doing so, but that's what would happen. But there are other props, or rather sources of appropriate support, which could make her staying at home a reasonable option for the time being; only of course you won't feel relieved of responsibility until she is somebody *else's* responsibility, i.e. she is in full residential care. Tricky. The thing here is that "primary caregiver daughter can't take the worry any longer" carries no weight in the "does this lady need to be in residential care?" calculation. Provided there is adequate support in place, your constant worry about her is your problem, it isn't your mother's problem. This matters because even if the neurologist does hand you an official "Totally Away With The Fairies" certificate that won't in itself enable you to carry your mother bodily out of her house.
Your care co-ordinator - have you briefed her only to look for facilities, or is she offering a wider range of ideas than that?
It is a sensible assumption that your mother will eventually need residential care. It is therefore also sensible to look for it now, because the better shape a person is in to start with (generally speaking) the better the experience is likely to be overall. However. That doesn't mean that nothing can be improved while you wait, and accepting that here-and-now your mother wants to live at home - mentally getting on board with that - will free you to think of other ways to take the pressure off yourself.
Await the crises everyone said 😬 all you can do.
The day she called & couldn't find the fridge they admitted to ER with 'confusion for investigation - ?stroke'. Wasn't even a stretch to add dehydration to that. From ER, respite care, then neuro exam, all the legal stuff, then permanent placement. The elder had no insight, no reasoning, certainly no willingness to move. Sad but necessary.
It really is a hard situation.
But that Neuro in Feb is not far off. As Countrymouse suggested, can you hire a home aide to oversee the meds? Stay for lunch too? Least she's have her meds & one decent meal. Then a welfare call from you in evenings?
More eyes & ears until you get the Neuro dx. Hopefully you have a springing POA?
Then as to actual moving day. Drive there at pre-agreed time for staff to take over. (Bit like first day of school drop off).
Keep us updated if it helps.
If she were to leave the house to get mail...she may never return.
If there were a fire would she know to call 911? Would she know to leave the house?
For her own safety the options would be
You move in with her....not a great plan.
She moves in with you...again not a great plan.
She pays for caregivers to care for her 24/7....a good plan but expensive and can be problematic. But if she has the financial means that might be a good option.
She moves to Memory Care.
YOU can make the decision. You are in charge of her welfare. (I do hope you have POA)
You select a few places and take a tour then take mom with to do a tour of the one you selected or 2 that you selected. She has no say in the matter.
Yes she will not like it, probably say she hates you. But she will get over it.
She will be confused, she will decline.
If yo have actually chosen a place try to get some of her personal items there in advance so that she will have familiar clothing. If there are photos, some furniture it would be nice if someone could bring those in while you are having lunch so they will be in her room. I am sure the staff will be happy to help out with this.
It does not sound harsh.
I am sure she went through the same thing when she dropped you off at school for the very first time.
* Don't tell her she is moving. Say she is visiting a good friend or someone she knows.
* If she has dementia, she won't know the difference.
* No elder with mid-late stage dementia should be living alone.
* You must take action asap.
* Call an attorney if you do not know how to proceed.
Gena / Touch Matters
It's also a very good point that it's better to do things now while you have a choice of where she can go rather than being forced into a situation where her choices are more limited on placement because of things that may have happened (falls, injuries, etc). That happened with my father in law. We waited too long and then he was in the hospital and we were forced to find a place in 2 days. The places he could have gone to earlier had no vacancies and we were left with a choice that wasn't as great but we had to act on last minute notice. That was a terrible experience.
You are doing the right thing for your mom. You really are.
If you are waiting for your Mom to agree to the move, you will always be waiting and your Mom could be injured or worse. Get things lined up and moved her ASAP!
I think my next move would be to consult with an elder law attorney for your state to see what her options may be before calling the county. I think it will be money well spent. Guardianship is your only option that I can see (if you want to take on this responsibility). It can be an expensive legal process.
If guardianship by you is not an option then In the end you will need to involve social services for her county and they will move for guardianship. You will lose all decision-making and management control of her medical and financial. I'm not even sure it's worth your time or effort now to look for a facility because you may not be the one making that decision for her. Again, I would consult with an elder law attorney who is familiar with guardianship and working with social services.
My recommendations: First and probably most important: Stop talking about moving or trying to convince mom. Research without including her. You want to find two or three facilities that meet your criteria (staffing and special dementia training, etc) - After the "glamour tour" with the marketing person, get permission to visit by yourself. Spend an hour or more in memory care simply observing (fly-on-the-wall) and imagining yourself in Mom's shoes - Once you've made your decision, rent her room/apartment and furnish it, so it’s ready for her move - later. Bring Mom there for lunch at "this new cafe you like" - Arrange with staff to have you and mom seated with a couple of their outgoing residents. - Come back the following week and the next, progressively .
During these visits help Mom converse with your table mates. Unless she brings it up, retrain from talking about her move. - Be patient! - Gently steer the conversations to daily life, activities, and friendships. Extend your visits to participating in afternoon activities.
When you sense that Mom has connected with the other residents and is starting to feel at home, ask her if she’d like to spend more time there. It’s a very slow “dance” to get to the point where the move feels that it’s her decision.
Impossible? No. The average time to get to that point is two months. I’ve actually had clients beg me to stay. To reinforce this, I’ll usually tell them that “this is a very popular and sought after place to live, but I’ll check and lo and behold, she’s incredibly lucky that they have a vacancy. We’d better take it before someone else does.”
Good luck.
I wish you well
I visited a few facilities and found one I liked. Once I found one I consulted with the lead nurse. She advised me to pack up a few things for her and drop them off ahead of time. Then the next day, my brother told her he was taking her to a doctor's appointment. The facility is in a rural setting so she started to wonder where he was taking her but he pushed on. Once they arrived at the facility (I was already there) the nurses chit chatted with her for a few minutes and loosened her up. When she felt comfortable they took inside and that was it. I called to check on her and they advised me to give her a few days to calm down. Since then she's been settled in. She doesn't even ask about going home anymore.
It was one of the most emotionally draining days of my entire life. The anxiety I had leading up to that day made me physically ill.
However now she's there, she's safe and she's taken care of. And as her disease has progressed, I know we did the right thing.
We had NO idea how this would work. The night after our tour, he was sitting on the bed at home and I was helping him with his pajamas. He looked at me and said, "I want you to know something...I'm going to go live in a very nice place."
It was an odd comment, and I reassured him that it was just a short "vacation" for him, but he seemed to know something that even I was not aware of.
After his first week, before we went to pick him up, the staff called to say that he was upset, crying, and did not want to come home yet. So he stayed another week, at the end of which this behavior repeated (wanted to stay), and then again...
He was there for nine months, until he passed away this past November.
I visited every day, except those days when i knew that his mother or sister would be visiting.
I realize that this may not work for everyone, and we certainly did not expect this from him. But there were some residents there who stayed a month, went home for a few months, came back again for a month, giving their caregivers a much needed break. I think that's what we were planning, but it seemed like somewhere deep inside his clouded cognitive function, he knew that this was a safe place, and he was ready to be protected and cared for by a loving staff.
Previous posts have brought up some very important points. First, does she have a will, a trust, a Power of Attorney and a medical directive? If not, you should do that immediately. You will need the POA and medical directive and a POLST, if you want to get her into a care facility. If you do not have these things, get it done because soon she will not be able to mentally make the decisions needed to perform those items, especially if it this is the first time she is making these decisions.
While that is getting done, get a real inventory of all of her financial assets, her bank accounts, her real estate holdings and stocks owned, any life insurance, etc. You will need these things because you need to know how much she is able to pay and what options would be available (e.g. day time at a senior center?) Should she pass away, it will make it easier to distribute her assets, pay bills and pay tax, etc.
Also, I highly, highly, highly, suggest that you get in-house caregiving for her. If she is truly mid-late stage, she cannot follow directions consistently, nor can she be expected to make those rational decisions that you and I take for granted. Just based on the description of your post, I do not think she is in mid-late stage, however, more like early to mid. Get her professionally diagnosed, look for a geriatric doctor. The official diagnosis might be a shock to you.
For you, I suggest that you try to find for yourself, a therapist who deals in caregiving of elders. It is worth your time and money to get the right therapist, who can guide you through the methods and pitfalls of dealing with your mother. There might even be a non-profit in your area that can provide therapy for free or group therapy. Memory Loss shows up differently in different people and you need someone to help you personalize your interactions with your Mom with minimal emotional upheaval for both you and your Mom.
Don't wait for a life-changing event that you have to react to. Take control and start scripting your future and your Mom's future.
Many ALs around me roll out the carpet when it comes to respite care as they want to make sure the senior chooses them. Three chef-prepared meals a day, drivers to take you shopping or the doctors, often beautiful gardens one doesn't have to maintain, daily exercise classes, seminars about everything from flower arranging to football.
I wish seniors would see respite as choosing between various hotels. The ones that are more accepting of that from the get-go are ironically the ones that will be invited back home, because it's respite.
Best thing is to get in touch with a social worker & explain situation. Tell them you need respite. The social worker should organise for your mum to go to a place for a week respite. You could tell your mum it's a holiday just for a week as the Drs said she needs a rest. Also organise an ambulance to take her so it removes the upset/ guilt. Sadly your mum is at risk of hurting herself, a house fire or being run over/ getting lost. A gentleman was lost for 3 days & finally found alive near a stream in a field. The family were frantic I helped search for him. Sadly he died in hospital. So you are right to decide she needs care & you need a life. My mum had to go in a home for her safety. I had a young daughter & job & looking after my dad. The guilt never goes but you know she's in best hands. You can visit, take her snacks & make her window sill pretty with flower s etc. I'm now looking after my dad at home with vascular parkinsonism. He can't walk & we have carers help 4 times in day & twice in the night to help me get sleep. He still can make decisions & he's not at danger to walk out side & burn the house down. So get your mum some help & go from there. You are being kind to your mum that you love. Hope this helps