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*I want to stay home*. I get that.. but what does the *as long as I can* actually look like?


Not being able to shower or dress? Collect shopping? Prepare meals? Can get Aides to visit for that.


Not able to change soiled continance aides? Put rubbish out, clean up? Yuk but not life threatening. Can wait for next Aide visit.


Not being able to get out of bed to let the Aide in the door to do these things?


I think we've crossed that line of *as long as I can* now. She just doesn't get it.


So my question is: is there a list from APS (or Human Services or wherever) of minimum standards to stay living alone? I found a hospital discharge questionaire but have lost it - inc ADLs, falls risk, poly meds.


I have advised her Doctor, had an OT assessment done. Both recommend assisted living (ignored). Suggested a key box (refused). Calls ambulance when fallen but keeps refusing to be taken to hospital.

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.
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Beatty Aug 13, 2019
LOL thanks for making me laugh tonight! I hadn't thought of glueing the shoes on, ha ha.

"run out of spots to put grab bars" Dad is arranging another one in the shower next week!

The trifecta of depression, anxiety & mental illness already live there... I think it may be MY mind that goes to mush very soon :)
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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....)
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NancyInSc Aug 13, 2019
"People just live too damn long these days. Outlive their money and any quality of life."

I think it is an evil plan by the government to kill off many of the boomer caretakers before SS runs out. HaHa.
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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
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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
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Justme44 Aug 13, 2019
Absolutely! Its like waiting for a train wreck to happen, right before your eyes! I get why they want to stay home, but at some point safety just has to be put before wants! Not easy situation to be in. Keeping you and your dad in my prayers. Only time, will tell.😇
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"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 :)
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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
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I have no family, no one. I lived in a lovely home with my animals but due to an old spinal injury I could no longer walk. I would have sold my soul to the devil to live out my life in the house but I could not handle three floors. When I had to have two banisters and use a rope to lift my leg onto the next step and then pull myself up and start over again, I knew I was done. It was sheer hell for me to do what I had to do in the house. I loved taking care of the outside property and being outside but when I had to shovel my walkway holding onto the railing with one hand and pushing the snow away with the other, I realized the end was near. I finally went into assisted living because I could not walk. I never thought assisted living was what it is - where the misfits of society go because they can't take care of themselves and no one wants them. Sad but true. Here I am, a fish out of water, nearly 86 years old. But I fooled everyone by taking 30 college courses on line in six years (stopped six months ago); going to computer school; writing book; still drive and go out to eat by myself; read two books a week; have all kinds of hobbies and take care of myself 99.9% - all because I am disabled. I hope I don't live long as I hate this environment but what could I do - I was so helpless in that house. I am in constant pain but I refuse to stop doing all the things I always loved to do and sheer determination and impossible guts makes it happen - and I succeed. And thank god my kitty keeps me company.
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Beatty 21 hours ago
Riley2066, thank you for sharing & telling how it is from the other perspective. I expect it's normal to miss / grieve for your house. My Gran missed her house & her own space - was mobility that forced her move too. I hope you can still keep enjoying life, your kitty & hobbies. And keep making choices for yourself!
You sound like a very strong & determined person - all the best!
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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.
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star97 Aug 11, 2019
I’m no expert either but I do know that guardians in “close family or familial relationship with the ward may not be compensated or reimbursed for merely doing what any family member would do for their relative under the circumstances”.. I’m not sure this is in any way helpful so I need to read the original post again 😬☺️
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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.
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Beatty 21 hours ago
THAT is the scenario that I (& others on this site) wish to avoid if possible. THAT is the worst case scenario that even if you had a crystal ball & warned your Mum of it (like I have) she would probably still stay "I'll be fine".

My heart goes out to you for the journey you're still on. We just can't prevent it all. Just share the path & offer kindness I suppose.
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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.
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