"I want to stay home as long as I can." What does that actually look like?

It sounds like you have already decided what is best. Even sounds like she’s had the same suggestions from medical professionals.

If her doctor and OT recommended assisted living and she refuses then that is tough. Sometimes they listen to others better than family members.

I would say to her that she is out of options since she isn’t cooperating. I have the lockbox and I love having it.

I am here with mom so I let emergency workers in and I still put a lock box with key out front.

Your mom should have a lock box. I’m curious as to why she wouldn’t. Seems like it would give her peace of mind.

If she is not able to do the basic things like food prep can she at least get meals on wheels delivered? Have you contacted your local Council on Aging for assistance?

Go and check out suitable assisted living facilities by yourself, then tell her what is available. It really does sound like it’s at that point to me.

Best wishes to you and your family.

she needs a cognitive evaluation to determine if she is able to make rational decisions for herself. If she is not mentally competent to make decisions, then her wish to "stay home" probably is not a very good idea. They always want to stay home, and they want that past when it is safe. And they cannot "stay home" without a village of support which shows that they are not independent. And certainly they don't care what keeping them at home does so the people who have to care for them. I have a mother in a supportive living community and inlaws now in memory care who. None of hem wanted to move but finally they did

Is their "aging in place" plan dependent upon you providing all the care? Do you have any Power of Attorney?

My inlaws tried to pull the same baloney with us, MIL gave her son/my DH DPoA but her turd of a husband wouldn't. And they were not only broke but in debt. They had never given a thought to their "sunset years" except to assume we'd take care of them hand and foot (without our permission).

Since I did the bulk of the care and management, (he had Parkinsons and Lewy Body at 6'5") I told him we're not running 2 people over there in the middle of the night every time he keeled over or couldn't get out of his recliner. His wife would call 911 every time we refused to go help. This meant they'd take him to the hospital, then to rehab, then came the medical bills they couldn't pay. Over and over. Finally I informed him of his choices: either give someone PoA, apply for Medicaid and get yourself into AL or be prepared to become a ward of the state. He didn't believe me. He died as a ward of the state. But there was nothing we could do so I don't feel guilty about it. The lived in a house with stairs to get to the main floor. My MIL had profound short-term memory decline and wasn't remembering to eat. We got my MIL onto Medicaid and into a very nice facility and doing well. even though she didn't want to leave her home. It took her almost 2 years to adjust. Now her mental state is the best its been in years.

The only thing you can do is lay out the realistic options and even then they may not believe you, or they may have enough dementia that "reasoning" is a waste of time. For your own peace of mind you may wind up calling social services on them so they are on their radar as vulnerable adults. Not sure about your sister...she's on her own. Or should be.

What is an OT assessment? Is that for cognitive decline? Goo luck!

Here's what it looks like in my ex-husband's family. He is full-time, 24/7 caregiver for his parents, who are both 93 years old. Both are in wheelchairs. His mom has late-stage Alzheimer's disease. He has to feed her. Although dad can still get into and out of the wheelchair on his own, he has fallen a few times, and now they have a mechanical lift so my ex can somewhat safely help his dad get up. Mom can't move on her own at all. Dad and mom have enough money to hire help but dad is resistant to doing so. I assume that he will never consent to moving out of the house. The issue might be forced if something happens to my ex, which is a strong possibility, given that he has been providing caregiving services for the past six years almost non-stop.

They do not have a plan. One time, when we were still married, I actually asked my husband what would happen to his parents and their situation if he was in a car accident and had to be in the hospital. He said, "That won't happen." Seriously. He's got three siblings but they are extremely content for him to be the caregiver. It is a terrible situation.

Unfortunately due to shortages of beds in AL and SNF and the influx of Baby Boomers into the system, insurances and the government are pushing for seniors to be cared for at home by family. They will even keep the patient in the ER for 23 hours to keep from admitting them to the hospital and send them home as an outpatient.

"Go and check out suitable assisted living facilities by yourself, then tell her what is available'. You are right. She has no plan so I must (for my own sanity!) I have her on a list for a place connected to her church, enquired at 2 other places & booked a proper tour of the closest facility. It's small, clean, too $$$ for long term but may be a very good place to land for emergency respite.

I am breathing easier already :)

look for a place that meets those requirements that also takes Medicaid in your state. If she has any money, she can spend that for care and then can apply for Medicaid to pay when she is out of money. I suggest you do it that way rather then look for a place that takes Medicaid and have to move her there later. The odds are better to find a place you like, have her live there for a while at private pay and then they will help you apply for Medicaid when it is time. And don't look for her to agree, just tell her, once you have decided where she should go, that she has to move and take her to see it. My mother did not want to move either they never want to move. She said she was "not interested" and felt my sister and I could come to see her twice a day to give her meds. She did not eat on her own, did not clean or pick up anything, do laundry. She sleep 20 out of 24 hours (maybe even more). So while she was saying, "not interested", we just moved forward and got her moved. She adjusted, and is in good hands now

Beatty, if it comes to guardianship I think it's better you have it than the state. If the state has it you will have absolutely no say where your parents go (and they won't be obligated to make it nice or close). Pursuing guardianship will require you to prove their "incapacity" plus it costs money and time. I'm not a legal expert but if you do get guardianship you may be able to reimburse yourself for the cost if your parents have the means, but like I said, not sure if this is legal. Keep very detailed records and receipts. Ward of state should be last option but don't feel guilty if that's how it goes.

I detest all those "why" questions! "Why won't he wear his shoes?" Seriously??? It seems like the people who ask those "why" questions have never had to contend with being hands-on caregivers. It makes me want to respond with "He hates having anything on his feet and takes socks and shoes off within seconds of me putting them on. Do you recommend I use Elmer's or Krazy glue?" And then wait for the look on their face.

Getting back to your question of what it looks like. If there's lots of money, it looks just fine and dandy, and Adult Protective Services never gets called because the person who doesn't wear shoes is considered "eccentric". If there's no money, it looks and smells horrible. If there's some money, it's just plain hard because they are squeezed of every last cent before qualifying for assistance.

You will run out of spots to put grab bars - trust me when I say that we did.

Falls will happen more frequently. Nutrition will decline; personal hygiene will too. Their brain will turn to mush as they withdraw from engaging with their community and people their own age. Depression, anxiety, and mental illness may set in. They may become reckless, and drive or take risks to assert themselves and their self determination. They may get scammed out of money.

USA is no place for old people who never prepared themselves for being old.

I am one of those people that NEVER wants to go into a NH. BUT I know that, depending on what happens, that may not be a reasonable demand. I am "young" and healthy and strong, but in 20 or 30 years, maybe not so much.

I have told my mom she can stay home with me as long as possible. I said, jokingly, that after 10 years with dementia care, I'll be done. Who knows if I could actually last that long!

I think the trigger for me will really be more in the incontinence arena, especially on the bowel side. I just won't be able to physically or emotionally deal with that and she will ultimately end up in a NH when/if that happens.

My daughter, a RN, has agreed to take me in when I need it, decades from now. She's worked in an AL facility so she knows a good deal of what she'd be getting herself into.

I don’t want to go into a NH either and I tell my husband and kids that if I reach a certain point to take me out back and and just shoot me! Hahaha.

People can live at home until the end if they have enough help (aides, nurses, house cleaners, cooks...). Speak with Medicare (or Medicaid) to find out what kind of help is available to you. Definitely get her a Life Alert type system where she can press a button on a necklace or wrist band to call for help if she falls. A lockbox for keys by the door, or some other kind of system where aides can come in would be helpful. They have apps for this now. You could even be the one to check who wants entry. You and your mother (if she is capable) will have to balance the cost of having help coming into her house compared to a nursing home. Be sure to get Power of Attorney (POA) for her medical and financial matters, and if she doesn't have a will, and a living will for her medical directives, get them executed as soon as you can. You'll probably need an attorney for the paperwork. Know what her medical wishes are. Speak with professionals who can help advise how to get equipment to make the household situation easier.

You may need to Involve Elderly Protective Services Now or One Day, Pay...Those Soiled Consequences..xxoo

I’m right there with you. And no, there’s no list of minimum standards for living alone. Though I’m my dad’s POA I’ve been repeatedly advised that as long as his mind is sound I have no choice in where he lives. And he’s definitely of the mindset of living alone in his home “as long as I can” It’s pitiful to watch, he’s so frail. Something like pouring a glass of orange juice is painstakingly slow and precarious. And his whole day is like this, every single thing he does takes forever and is a near miss accident. The house condition and his condition are both showing signs of the steady decline, despite the housekeeper and many accommodations and helps we’ve put in place. His doctors have told him not to live alone many times, he ignores the advice. It’s all very hard to watch but I have no choice but to respect his decision. There will be an event, for you and for us, that will change the situation, it’s just no fun waiting on something bad

I'm just waiting on the fall that truly injures my mom. She's only 77 but uses a walker and falls all of the time (broken hand, shoulder, back...so far). She's an alcoholic and abuses prescription drug meds that negatively interact with alcohol. Eventually there is going to be a fall that will put her in a nursing home. I've resigned myself to that. She refuses to have any frank discussion about her situation. She's placed me in a bad situation, as I feel all of our lives are on hold.

Yes. You can google search ADLs for information you are needing. There is a solution to just about every obstacle to living at home such as medication machines, grab bars, meals on wheels, adult day care, assistance from CNAs, nurses, etc......but usually it comes down to money. Either the individual runs out or the state decides it's cheaper to place the individual into a nursing home. If she insists on maintaining her independence, she will need to relinquish a little. A key box is a must, if she can't physically get up to let in the people hired to help her, for example. If her choices endanger others, that is another time for intervention.

Interesting thread. Except for a week here and there dealing with post hospital care for my mom I was not a hands on caregiver. But after my short calls to duty, bathing, toileting, and cleaning up accidents for mom I knew damn well I couldn’t do this. I honestly don’t know how people do it. I salute all those that do.

My folks aged at home until it was almost too late. They refused any help and I was about to turn them over to the state but mom finally had the big fall and I moved her from the hospital to assisted living and then moved dad a few days later. There was no way to keep them home at that point even if we’d had the money for 24/7 in home care. They had a tiny house, tiny barely functional bathroom and the whole place was falling down despite my efforts to fix everything.

People just live too damn long these days. Outlive their money and any quality of life. My mom had 5 bad years and then 5 horrible years of falls, pain, sickness and depression. Those 10 years were made possible by all the modern meds and surgeries that are now available. But what ya gonna do? Deny mom and dad heart meds?! I’m tough but not that tough.

Mom died over a year ago. Dad is wasting away in a memory care facility, he gets good care but it’s not life. He’s 89, excellent vitals, eats, poops, sleeps, repeat.......Good lord. How much longer....

Ive been hanging around this forum off and on for a few years now. I’ve read the hundreds of nightmare live in caregiver horror stories. New waves coming in regularly. People totally unprepared and caught off guard. Promised to never put mama in a nursing home. How do I convince dad he can’t drive.......I was a rookie too a few years ago. But I read articles on this site. Took some good advice from people and acted on it. This forum can be frustrating at times but it sure saved my ass on more than one occasion.

its clear to me that careing for very old and disabled people in their/your home hardly ever works unless you have some very deep pockets which most of us don’t. The Bush And Kennedy families can do this. Probably have full time docs and intensive care units on site at the family estate. Most others......How can I get someone to fix the plumbing and put in grab bars for free?? If your asking those kinds of questions home care is not an option for your family.

And as long as I’m ranting a bit, I’d like to see shorter and more direct responses to questions. Fill out your profile so people can see your basic situation. Then you don’t have to repeat your caregiving history in every post. (Oops. I just did that here....)

My Dad was a "I want to die at home" person. 12 years 24/7 with no respite, he got his wish. I was to only to be in their house for 2 years, but he just kept getting better then worse.

I have a relative who is considering taking care of her father instead of finding her own place. My advice was to go to the key rack on the wall and take the keys to the truck and move her stuff to a cute apartment. She is too young to ruin her life. Her mother is running a huge guilt trip on her so she has not left yet.

She is a risk when you said she can't get out of bed to open door for aides - that alone is what I would say is crossing the line -

She is in an inertia phase where any change is an automatic 'no' so now you must do what is best for her not what she wants to do - just the refusal of the lock box should have shown that - yes it is hard but a side benefit is that you will sleep at night

Your mom is past the point that she should be in care by some months - remember it is not you placing her there but her behavior so don't guilt yourself out about it because basically SHE IS NOT SAFE ALONE - she could burn down the house by leaving an appliance on overnight & she wouldn't respond to it appropriately

Yes you are right she should not EVER BE ALONE YOU ARE 200% CORRECT!

Safety is key. If she is unsafe to live alone and there are not sufficient funds to pay for in-home care, then the time has come to place her. That is the line (at least for me).

If she can afford help at home, then the risk factor is reduced because there is someone there to help her. To be honest, even with someone there, its not foolproof that she'll never fall again. The difference is that someone will be there to assess whether she needs medical help and it can be called immediately without delay. If there is no help and no one to check on her regularly, then she could lay in pain for days.

If she is refusing basic safety measures, you can lay it on the line for her. It's either the safety measures or you go to a facility, because the safety measures are the only things keeping you at home. I had to do this with my mother. She has no money for in home care. She's in an subsidized senior apartment. They only way her doctors felt she could stay at home was if I installed cameras in the home and check on her every day, multiple times a day. So if she did fall, I could call help to her. Sometimes they would rather stay at home and deal with the minor inconveniences than accepts going to a facility.

I sympathise. Really do. Except I live and care for mine. Even so, the decline gets worse on daily. Mine needs in pt rehab asap but getting through to them what the safest thing is another story. I have no advice. Just know you arent alone trying to figure it all out! From my own experience it sounds like she is definitely past living on her own and maybe doctor could sign her into snf? Hugs & prayers!

The trouble is, there can be as many lists of standards from bodies as authoritative as you like; but as long as your mother understands the possible consequences of the choices she makes, it remains for her to make those choices. In the end it is she, after all, who has to live (or not!) with them, and not anybody else.

This is extremely hard on the nerves of anybody, especially you, who cares what happens to her. You are the one who has to live with the daily anxiety of hearing that she's had a terrible fall, or of not hearing from her when you expect to, or of getting a call from an accusatory-sounding neighbour who demands to know what you're "doing about her."

But it is still Not Your Life and Not Your Decision.

Sigh.

So, she calls the ambulance to help her up off the floor, then?
And if she can't get to the door to let the aides in and she won't have a key box, how does she think they'll get in - down the chimney, like Santa and his caregiver elves?
Is there anybody she *would* trust with a key (not counting you)?

What about calling the OT again, and telling her - keep your voice neutral - that AL has been decidedly refused; and that being so what adaptations, equipment and alerts could she recommend that might help meanwhile.

You didn't say where your LO is now but I think the landlord or the building manager would agree that she is not safe there without 24 hr assistance. If she owns her own home it's more complicated. Call the local Aging Council or Human Services Dept and start a dialog, maybe ask for a visit.

Here's what it looked like for my mother. Spouse died in 2000, lived alone in 5-bedroom house with occasional short-term boarders. Progressively higher doses of anti-depressants, anti-anxiety, and sleep aids, starting in 1995, contributed to negative changes in mood and cognitive abilities. Diagnosis of "Mild cognitive impairment" after cancer treatment started in 2007--this improved somewhat by 2010, but never regained previous level of her cognitive abilities. Continuing high doses of anti-depressants, anti-anxiety, and sleep aids. By 2015, mom had hand tremor, speech aphasia, memory and other cognitive problems, worsening depression, fatigue, and losing will to live or help herself in any way--but still swore she was "fine." In 2016, mom got off all anti-depressants, anti-anxiety, and sleep aids (cold turkey, just stopped)--dramatically improved speech, mood, and stamina happened very quickly and hand tremor gone overnight. These gains leveled out after about 6 months. Between 2015 and 2018, brain MRIs showed worsening vascular and white matter changes, leading to diagnosis of "Mild Dementia" in 2018. But mom, age 80 in 2018, was still living alone, driving, shopping, cooking, paying bills, said she's "fine." Memory meds tried and quickly stopped due to severe dizziness. April 2019, mom slipped on a throw rug, closed head injury, unconscious and alone on the floor for 3+ days before neighbors went in with key and found her. Immobility and lack of food and water for 3+ days caused organ damage, muscle atrophy, malnutrition. Hospital 1 week, rehab 4 weeks, now in memory residence since May 2018. She lost quite a lot of cognitive function from the fall and medical emergency, tho she DID regain ability to walk, speak, and feed herself within a couple of weeks--but even that was not guaranteed. She was not incontinent before the fall, but now she is and wear diapers. She still says sees "fine" now and wants to go home! It was a horrible experience seeing my mother in the hospital, unable to sit up or lift a spoon to her mouth, barely able to say a few words. They could not even put her in diapers at that point because her skin was so irritated from lying in her own urine for 3+ days alone in her house. So if you want to avoid this scenario or something similar, you and other family members must take charge. Start with power of attorney documents.

Unfortunately from what you're describing he/she sounds competent to make their own decisions whether you agree with them or not......
That being said I haven't found many Doctors that even like to get Hospice involved until it's way past a sensible time.
You could try calling DCF and see if they are welling to do an in-home evaluation, keep in mind your loved one may figure out it was you and you could create a bunch of resentment in this process.

How does EMS get in if there is no lock-box and she has fallen (how does she even get to the phone?)

I would override the lock-box. There may come a need for that - if she balks, ask her if she'd rather have a busted down door or a lock-box and just put it there.

I would also install cameras in non-private areas, so you can monitor things remotely. We installed some to check on who is coming in, but it revealed some OCD behavior that started (possible sun-downers in her case) where she would check the door lock, sidelights, something in the kitchen (later identified as the dishwasher) and whatever in the LR (lights reflected off kitchen cabinets via pass through from kitchen to dining area.) Clearly not normal behavior when it became a nightly marathon! This started with a few iterations a few nights, but evolved into repeating all the above over and over for 1-1.5 hours EVERY night! I also noted that she was wearing the same clothes over and over, up to six days, sometimes soiled - this from a woman who changed outfits daily, had more outfits and clothes than TJs and Marshalls, a different one for every possible occasion!!

There's no mention of any cognitive issues for your mom - even with a Dx of dementia, we can't force anyone to move if they refuse (been there, done that - EC atty said NO.) Also, if no cognitive issues, seeking guardianship may well be a waste of time and money as well. Refusing to move or allow help to come in are not likely going to be enough criteria to get guardianship granted. If the calls to EMS are enough (can you get a report on how often they have been called over a given time period?), combined with some eval from OT and perhaps APS, indicating the place is not cared for (trash piling up, living in soiled undies/clothes, unwashed, etc) may help push that guardianship forward. You would be well-advised to get a consult with EC atty (usually first is free, maybe 30-60 min - check first!) If you do go, make a list of questions to ask, and prioritize it in case you run out of "free" time.

I really don't think there's a list or any one or more issues that determine when the move is advised. In her case, falls, being unable to dress properly (can't get her shoes on?), etc - many of those things you listed are considered ADLs and when someone cannot perform the simplest of them, it is likely time. However, that brings you back to the pickle. You can't force her to move. Even with dementia you can't. I would think EMS might get tired of having to pick her ass up off the floor, but who knows - maybe they don't get a lot of calls and jump at the chance!

Making a detailed list of what she can/can't do and reviewing it with her doctor could help. Doc is likely only be able to recommend AL, but if he can get APS assessment ordered, based on what you have listed, they may have more clout. Never had to go that path (mom's plan had included AL until the dementia kicked in and her view of herself and her abilities were warped.) We had to come up with a ruse to get her to move (cellulitis just before the move, YB drafted a "letter" from "Elder Services" at the hospital, telling her she either goes where we choose or they will move her.) All a big fat lie, but she fell for it - VERY unhappy about it, but reluctantly moved. She still begged to go back to the condo.

BTW, our mom was not even close to where yours is... Short term memory loss, eating crap (couldn't follow directions for cooking), messing up finances, some OCD night behavior, wearing the same clothes over and over, bad hearing/forgetting to replace the hearing aid battery, turning the phone ring off or leaving it somewhere unknown, etc. I felt it wasn't safe for her to stay there (none of us was "around the corner" if she needed help.) The only other suggestion is to give her an ultimatum, but she chooses: 1) allow hired help in for as many hrs as YOU determine, or 2) move to AL. She says 1 and then doesn't let them in, #2.

I will tell you that my late mother was "keeping house" 500 miles and 7 states away from me and half a country away from my sibling - NOT. She never made any decision on where her living arrangements would be going into old age. She demanded to live alone in her own home, saying "I'm so glad that I stayed in my own home." Legally blind, CHF, A-fib, Arthritis. The deal breaker was extremely low blood pressure and that's when I had to leave my life behind and move in with her. Most people verbalized "Was I nuts?" No, but I had no choice in the matter. You're lucky that your LO calls the ambulance. My mother never even told me she fell a few times, saying in a childish voice "I don't have to tell you everything."

Lots of dysfunction in my family that affected things until a couple of years before my brothers death. But my mother had adequate funds to be in an AL apartment and money to travel or so enjoyable activities and for household help. Money to have adaptive features for her home when they were needed. She had paperwork in order. She had downsized from large house almost 20 years before she died. I did no hands on care. She had hearing and vision problems. She died quickly after have a couple of mini strokes and then a final stroke. Having adequate financial planning makes all the difference for both the elderly person and for their children who have to make arrangements for them. I have adaptive features in my home and have tried to get all of my finances in order. I don’t want my son or grandchildren to have to take care of me. When help in my home is not enough, I plan on assisted living and then more skilled care as needed. Looking into buying into a progressive retirement setting that is under development in my area. My younger brother lives with me. He has been diagnosed with Parkinson’s. He is mostly good with his own care. I drive him most places or he uses Uber. I keep track of his medical appointments and go with him if he asks me to. He has his finances and paperwork in order.