Background: Mom just turned 89 this month. Her heart is still strong, and her mind is still sharp. But, she has crippling degenerative bone disease. She “walks” only with a walker, and even then stooped over at a 45 degree angle, and she literally can only take baby steps — steps that span just a few inches. And she’s in constant pain … hence, the four Tramadols (an opioid) she takes daily. She lives alone. (However, we live less than 2 miles away and, we go over every day, sometimes several times a day.) And things are getting worse by the day.
Last week mom said that she “just can’t do it anymore”. And she also said something I thought I would never hear her say — that I should look into finding a Nursing Home.
Hence, today’s question of the day. Also, do please read the attached article.
Q: What do you think of Nursing Homes …. and would you put a loved one in one?
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Me?
I think Nursing Homes are the equivalent of hell-on-earth. It is a place of The Living Dead …. where ill, but NORMAL people, are turned into pill popping Zombies. A place where the staff are Demons In Training.
NO WAY IN HELL do I want to put mom in a Nursing Home!! I’ll do whatever it takes, and no matter what the cost (see article below) to keep her out of that hellhole. Then again ….
In other instances of asking for opinion and advice, where I actually do listen and consider what you guys say — well, my mind is pretty much made up on this one. I’m 99.99% sure I won’t agree with it. But, that does leave 0.01% uncertainty and questions: What about HER free will?? What if I’m just a stubborn ass who wants MY own way? What if Nursing Homes aren’t as bad as I make them out to be?
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Russians Don’t Do Nursing Homes – Abhor the Idea
The vast majority of Russians insist parents should be cared for by their children – at all costs. Only in rare cases would this occur, i.e. no kids…
In America, we have been brought up to consider nursing homes inevitable, like winters in New York. You live your life, as brightly, as vividly as you can, stretching the seams to make youth last as long as possible. But once you are old and gray and senile, you do the right thing and make way for the young.
You’ve had your fun, now let them have theirs. No modern person has time to waste and naturally, everybody hates “leeches.” So you quietly make your way to the nursing home, not ‘wanting to be a burden to anybody’
Yes, usually it’s horrible, terrifying, lonely. The sense that there is nothing waiting for you, except maybe checkers and visits. And Death. But it’s just the way things are. Everyone is accepting of the common tragedy.
On one of my first visits to Russia, I was talking to a single mother who struggled to support two kids in Moscow. She was also taking care of her senile, sick, and rather difficult father.
I asked her whether she had considered giving him to a nursing home or at least hiring someone to help her take care of him for a small sum.
She, genuinely horrified, said “How? How can I give my Dad away? For some other stranger to change his sheets?”
I remembered her every time I asked Russians about old age and retirement homes. Most of them seemed repulsed by the idea. I then started looking up forums online to see whether it was just people in my circle. Nope. Online, even private nursing homes publicly mourn Russians’ inability to understand the convenience and humanity of nursing homes.
Predominantly, Russians really believe that sending parents to a nursing home is wrong and ungrateful and downright shameful.
Of course, part of this comes from the fact that in Russia, most nursing homes present a deplorable picture. But that’s not the whole story.
Surely if the society believed that this was something they were convinced was necessary, better and more nursing houses would appear to meet the demand.
The fact remains that the people in Russian nursing homes are usually either people without relatives or parents who have cut all ties with their children. Polls in Russia suggest that exponentially more people intend to keep their aging parents at home.
And while Americans tend to use rational and practical language to explain the nursing home phenomenon, Russians will often use emotional and ethical language on the question, using words such as “duty” “love” and “right thing” … rather old-fashioned explanations in our day.
Some Russian Christians argue that a loving family will naturally want to keep the parents: giving them away would be like giving a helpless child away. Worse, maybe, because parents have already invested time and love into you.
They say that facing and dealing with the inconvenience and annoyance that an old person may cause teaches people patience and sacrifice. Kids learn from the start to take care of people, to suffer inconvenience for a higher good.
But for most Russians, nursing house hatred is just instinctive, based on an internal, unspoken logic: you take care of your parents, your kids will take care of you, a generational chain of mutual service. And even if that’s not what happens, Russians have a deep sense that that’s how it should be.
For them, what it comes down to is this: do you sacrifice your own comfort for your parents or do you sacrifice your parents for the sake of your own comfort?
Should this 75-year-old Grandpa be in a home? Enjoy 🙂
It depends on the nursing home and the people running it. My mom refused to put my Dad in a nursing home as his alzheimers got worse and worse. Her life became a nightmare. She was calling 911 constantly because he would fall and she couldn’t get him up. She found him in the car in the garage one morning because he thought he was going to work. She was frustrated and exhausted.
I finally convinced her to put him in a Catholic nursing home called St Francis about two miles from her house. It was the best thing we ever did. The management and nursing staff were top notch. They cared about everyone. They treated the patients and their families with love and respect. My mom came every day, spending 4 or 5 quality hours with him. The staff did the hard dirty work. She made dozens of friends among the residents and staff.
She continued to volunteer after my Dad died. Then it went all downhill at St. Francis. The new Cardinal of Philadelphia had to pay off the millions in hush money for the priest abuse coverup. So he sold off all Catholic run nursing homes to some mega-corporation. They immediately fired all the long-time staff and management at St. Francis. The quality of care plummeted. The patients were mistreated. It was all about the bottom line. Food quality declined drastically. Eventually the state had to come in because of all the complaints.
I would guess that most nursing homes are now on par with this, unless you have extreme wealth and can afford only the best.
So they could have kept St Francis running fine, if it wasn’t for those pesky kids. Just like Scooby Do.
A George Segal, Ruth Gordon cinematic black-comedy cult classic from way back asks the same questions (sort of) and comes up with a surprising answer.
If she doesn’t go to a nursing home, which are depressing by their very nature, prepare to do the nursing FULL TIME either yourself, have someone else do it, or share the load. These are your choices. Whatever you choose, it will require personal and financial sacrifice, just like they did for you as a child. Good luck, my wife and I have gone through this with one parent and are now facing it with another. We found a great place that will transition them from independent living to assisted living to nursing care all in the same facility, so they can keep the friends they make as they move on.
Mom had Alzheimers and became too much for Dad to handle, so she went into a nearby nursing home with supposedly a good reputation. Most caregivers were female and-though I was hundreds of miles away-I felt were decent people. There was a middle aged male, short in stature, who always wore some kind of “official” looking white medical outfit that was like a double breasted suit; I guess all the buttons gave the guy credibility. Apparently he was on staff for the muscle needed when residents/patients needed to be moved and were unable. After about the third semi-annual visit to see her I noticed that whenever he came into her room she would tighten up, grimace, and growl. Dumb me, I didn’t have a clue as to what she was going through with the pervert until after she died.
You mention transitional care: our most recent experience suggested to me (not the decision maker) that it is very, very important to understand-preferably in writing or even in contract form-what each level of care will do and will NOT do for your loved one. The 93yo was moved from one city to another at an increased cost of $1K per month and got less; plus, he was dead within 8 weeks of the move.
Word to the wise: die at home, even if you can’t get your boots off.
I recently read an article where many of those folks who could still reasonably take care of themselves found staying at a hotel/motel saved a lot over traditional nursing homes. Consider the benefits-costpernight $49-70, free breakfast, daily bedding change, security, etc. It makes financial sense to investigate whether this is realistic for your particular situation.
stevie, read the article. She can’t walk. This is called ‘bedridden’. Once a person can’t get around alone, they are no longer independent. This is my mom’s future problem rapidly approaching. Her older brother died last month at 91. He had told her that most days he could only look outside through the door, he couldn’t get around any more. One of his boys moved in with him in the last months of his life.
I have been spared a lot because my sisters take turns transporting my mom to doctor appointments. My black sheep of a sister moved in with my mom. I don’t lament that and my brother tacitly approved of that by giving my sister some cash. My mom seems more alert now than when she lived alone, the mind can waste away without stimuli. Plus, my sister’s grandkid livened her up with his little antics.
We have my wife’s mom living here, she is a a couple years older than my mom but is still able to walk. Her hearing is poor but she can still hear some and at times shows she has still got great understanding of things going on with her daughter’s families. Other times, she is confused, she asks if we just got back when actually we haven’t left to where we are going.
My mom was thrilled that I asked about her daybed that I thought my mother in law could use one. My mom in law said she had fallen off the bed at her other daughter’s house and probably has grown fearful of that happening again. My mom said she got a daybed because of the grab bars and support on the back side. It worked out well when she moved out of her bedroom and into the living room which is only a few steps from the kitchen.
In my short little life, I have seen a few widows living alone. This is perhaps the reason I appreciated Muck’s will to live long enough to not leave his wife a widow.
I CLEARLY said those folks who CAN take care of themselves….I’m sure there are many facing these problems and many wouldn’t think of a hotel/ motel as a possibility. I wish the best for you in your situation.
Stuck,am to a degree going thru this with me mom.I believe have someone who will live with her and help out around the home and thus can avoid the nursing home option,longer term not sure what the future holds.
I have given this a lot of thought on my part and before I get too beaten down ect. will have me affairs in order and then check myself out.
Best of luck with whatever you do,tis a tough slog.
As a painter/paperhanger I worked in many state run nursing homes, no fucking way, let me die at my own hands, Please!
Three years ago we placed both parents in a facility that offered independent living, assisted living and memory care. Mom was suffering with congestive heart failure, dad has advancing Alzheimers.
We had them in independent living, cost was $2,400.00 per month for a two bedroom with a kitchen. We knew that eventually dad would require assisted living and finally memory care as his alzheimers is progressing. Mom passed and we found dad needed more care, trouble is memory care is $6,800.00 per month.
We found a house close by that a woman runs, she only has six people, four women and two men, dad can afford $2,400.00 a month, the VA picks up the $600.00 shortfall as this place is $3,000.00 a month.
He gets meals, showers, shave, tv and more intimate care than he would have in a larger facility.
I guess if the parent just requires typical care take her home if you have the room and time, but dad requires 24-7 care that I can’t provide.
I’m going to purchase an insurance plan when I hit 65-67, it’s about $7,000 per year but I don’t want to become a burden to my children.
It’s that or a long kayak paddle out in Lake Michigan, never to be seen again.
Good detail in your story, Card. I dealt with a very similar situation. Mom’s memory care was 8k/mo.
It becomes a quality of life degradation if they hang on. She didn’t know who I was, in the last few months before passing.
That loss of Independence is frightening.
When my time comes, I hope it’s quick, and relatively painless, with a minimum of suffering.
In my sleep would be ideal, after one last meal, a prayer for acceptance into a hopeful bliss that awaits the soul on the other side, greeted with a ‘well done, good, and faithful servant. Come on in, and receive My Peace.’ welcome.
Nick, me or my son were able to be with Poppa Grooch round the clock at the end. He had many good days and I’m thankful we went to the trouble to bring him to be with us in his final months. But, once he required skilled nursing care, we became regulars at the nursing home seven days a week. The last few weeks one of us slept in his room, usually me since I wasn’t working then. He became my job and I preferred his company anyway, most days. He was a charming old Italian who liked to flirt with all the ladies.
We made the best of it, but I wish he’d not been so weak by the time we found out. He would have loved being here with the animals. That’s why there is a wet room in my basement and a walk out with a ramp… Poppa Grooch was supposed to be down there. About a week before he died, I was showing him pictures of the basement after it was poured, telling him where he would pull his wheelchair out to feed the chickens. He told me then he knew he wasn’t going to make it here. I told him I knew that but I was hoping when the angels came to get him, he might ask if they couldn’t swing by this piece of ground and let him see it and bless our future home. He grinned at me and told me he was certainly going to ask.
His ramp ended in a spot where he could look at the pond… it is a beautiful view and I believe he managed to swing by for a blessing.
I didn’t like having him in a nursing home but because I was able to spend so much time there with him, it made it the best possible end to a life well spent.
Card, if you are serious about “an insurance plan” (long term care????) you might want to start doing your homework ASAP. Dad bought a plan in the early days of LTC and it paid off for Mom’s care. More recently I read where insurers have radically changed those plans: much less coverage for much higher premiums and more frequent denials. I see the same thing happening on homeowner’s insurance, especially after widespread losses for the industry in a state or region.
One thing to remember: Insurance companies are financial outfits and are not much different than big banks.
Thanks for the heads up on the insurance changing, it figures…..
Yeah it varies greatly. My grandmother had a much much better life going into a Catholic private nursing home. We had to liquidate everything and my father etc ponied up cash to keep her in there for a year, then Medicare took over after that. Before her Alzheimers and health failed, she spent a few years loving it, socializing was really the main thing. They brought comedians, music, card games w/ others etc. She was isolated before that and had too many health problems to keep her at home, which at that point wasn’t her home anyway but just an apartment. My grandpa went to the state run one, it was pretty bad, demoralizing, but his health was so bad he didn’t end up living there that long. He died within 8 weeks there. But it was just visually unappealing, noisy from those moaning and acting crazy, with no soundproofing to speak of. The other one had good lighting, brighter colors and FAR FAR more activities to be involved in.
For most the “choice” part eventually goes away for the person or the family. It’s the not so pretty part of end of life, getting old ain’t for wimps and sometimes having people live so long doesn’t mean they are living better. Quality of life is huge. But I wouldn’t want a loved one in a home unless myself or other family members visiting on a regular basis, especially the state run places. My other grandma was in one temporarily and they left that place looking like shit, she hadn’t been bathed in clearly over a week. It was horrible, once my Grandpa was well enough to visit daily he was so angry and was trying to clean the place up and clean my grandma, he complained over and over and they started to do a better job, but what would have happened if he wasn’t there? Likely the same old shit, poor care. If you don’t have insurance or a ton of extra money to buy into the nicer places, its a crapshoot from what I can tell.
“then Medicare took over after that”
Please elaborate.
he probably meant medicaid,not medicare–
My father did the billing, I thought it was medicare, at least at first but then may have turned into Medicaid. It was required to pay for 12months, if they were there that long then the private nursing home would keep the person afterwards as needed. So I remember my Dad/Uncle had to liquidate what little was left use that and then they both pitched in to cover the rest. It was very expensive from what I remember b/c she had to stay in the Alzheimers care side, so they had to come up with around 6k/month for awhile. This was back in the 2004-2008 time frame, guessing its more expensive now.
I’m not sure if it was just policy for that particular Nursing home, or state law? It was in PA.
My father pays for the super pricey insurance for himself, but its pretty unaffordable for most people. Its pretty tough for most people to even tackle the finances of retiring, let alone having one spouse in care facility.
I don’t know exactly what was meant, but I can tell you what I know:
In some/all states, elderly who are indigent qualify for Medicaid reserved spots in some nursing homes. That was the reason we flew my husband to Ohio, got my father-in-law onto a plane with a release from a doctor and flew him to Oklahoma. Other family members had taken his life savings and turned him into a pauper so that the state would put him somewhere for free.
My husband got him to the airport just about the time I pulled in with the Oxygen regulator and breathing contraptions. What an education we got over the next 24 hours! And the next six months, but fortunately, Poppa got to us with a couple hundred grand in his sock drawer so he could pay private pay for quite a while.
However, if he was not able to continue to pay his bills and keep his medical copays paid, then there was always the threat of Medicaid taking over. Then, he would be sent to a Medicaid reserved bed in whatever nursing facility was available. Those patients were easy to spot… those were the ones who seemed to be alone all the time.
It was heartbreaking. And why I plan for my ashes to go into the ground between my big white dogs.
Your question has no “right” answer, and if there were, it would be prohibitively expensive.
Not one child in 100 born in this century will ever have the financial or emotional resources to help their parent(s) endure their decline with dignity.
There are innumerable benchmarks by which we measure a society’s greatness, but none are more accurate than how it treats its most vulnerable citizens, the young and aged.
Today, in the good ‘ole USA, parents have very little to do with how their children “become” adults, and the “extended family” is already extinct. Children learn who they should want to be from their online idols.
Parents, unless they control their children’s access to media and homeschool them, are sidelined, without much influence at all. My earliest and favorite role models were my grandparents. The USA’s astronomical divorce rates (2 X’s for me) means that few children ever have a meaningful relationship with both of their parents, much less any of their grandparents or extended family, aunts, uncles, cousins. Today, it is unusual for old people (60+) to have any influence on a child’s view of the world.
Without a “family” that values the stories and experience of those who lived in “the olden days”, our society will gradually extinguish any hope that the geriatric generation will be noticed by anyone except pharmaceutical companies and those providing feedlot care to those worn out by life.
Joan Baez sang hauntingly about the saddest part of growing old and being abandoned by one’s family as one’s friends die regularly.
Nobody even says “Hello” to them.
I see it every day I drive elderly to their appointments or shopping or the senior center for their $2.50 lunch. Most have no family looking in on them. When my dad was convalescing in the VA home north of our state my mom and I took turns every other day for a month or so driving up and just keeping him company each day. Lots of vets were there until they died with no visitors that I ever saw attending them.
Our old town part of the city is a food desert and when people can’t drive to get groceries themselves they have the added burden.
Absolutely not unless it’s her wish. And then it better be next door or right down the block.
Homes with small children should really have an old rocking chair in the corner gently rocking with a grandparent gently snoring, Bible on belly if baby not available.
At least part of the time, anyway.
We had to put my Oma in an assisted living, in the beginning of her decline (husband died, she all alone in empty house, fell, injured, etc). The assisted living we found was nice, so look around, find one where you think she will fit in, and feel comfortable. I used to visit with her, and she liked living around a bunch of folks, after being alone for so long. This was only the beginning for her, eventually her memory and her mind faded away and we had to go for a nursing home, where someone could take care of all her needs, by then she was in a wheel chair. This was the final destination for her, it’s sad but, this is how it seems to be in the US, most of us don’t live in extended families, and so a whole industry has developed to replace the functions previously performed by families.
I wish you luck, as you begin this journey.
My parents are about your mother’s age and in about the same physical condition. They found a “Senior Living Community” where they’re starting out in an apartment in “independent living” and can transition to “assisted living” if/when needed. They get two gourmet meals a day (they have a full kitchen so they can make their own lunches if they feel the need for a third meal), tons of activities (live music, movies, talks on a variety of topics, etc.), help for just about any situation is a phone call away if they need it, and there’s a friendly community of people they can visit without going outside into the snow and cold. They moved in last summer and are having a fantastic time! Their only regret is that they didn’t do it sooner. The place they found is actually closer to my brother than their house was so it is easier for him to visit and he can spend the time hanging out with them rather than fixing the crisis of the day. It is super expensive, especially up front, but once they signed on the dotted line the community will continue to care for them the rest of their lives even if they run out of money. If you could swing something like this it would definitely be worth it for both you and your mom.
If in home care is an option and available that is a good option. However, most of us do not have ADA (Americans with disabilities act) bathrooms which allow crippled people to easily access bathrooms. Our hallways are not wide enough. We have stairs we cannot navigate.
My mother passed away in August at 89. She had every ailment except cancer. Complete macular degeneration. Full blown dementia. No way could she have been anywhere but the nursing home a few hundred yard as a bird flies from my house.
If she had her faculties she could have had in home care if her house hadn’t been a split level job. You walk in the front door and have to go up or down stairs. I believe it depends on the mental state of the parent as well as the physical state of the children attempting to provide care. As an example, there is an old guy at our church who we have to help to and from his car and in bad weather someone usually follows him home to make sure he gets in OK. I found out this week that his mother is still alive in a nursing home. Obviously he is helpless to do anything beyond visit her.
As far as private nursing homes go, I discovered there are those all about maximizing profit. There are those who have a mission of making a profit by providing the best and most compassionate care possible. The former are filthy motherf’rs and the latter are living saints.
If a home has a “sales staff” they are usually at the top of the list of the filthy motherf’ers.
Regardless of which course you take, realize that there is no dishonor in being wrong about your best efforts and attempts. You may not be able to care for her in your or her home and if you can’t you are not helping her by denying she could be cared for better by a good compassionate nursing home.
We are no spring chickens ourselves and caring for an ill elderly person is the most soul torturing thing I have ever been through. You NEVER feel you have done enough or been there enough. One could go on and on about that. I felt defeated and unworthy, yet the staff said no one had ever been there to visit their parent every day as I did.
It’s a real no win situation yet probably of the things by which the Almighty will judge us.
God Bless you for being a good son and reaching out for the collective wisdom of others who really do understand and care.
I know you will be familiar with Peter Becker. My mom lived in PB for six years in her own two bedroom apartment. It was nice enough and gave her a community to be a part of. Once she get really sick she lost her apartment and ended up in a nice little room. It had care. She was taken care of just fine. The care givers were assholes of biblical proportions, but the place was kept clean.
She liked having friends. She liked having a restaurant that she could walk to without going out in the snow and she got to keep her stuff around her. All of that is important. She liked the cleaning crew. She liked having her own kitchen. That’s important too.
But in the end, it was the care that killed her. We all swim in a soup of germs. For the most part, the germs that we encounter are killed by our bodies defense mechanisms. But as we get older, those defense mechanisms wear down and we can no longer defend ourselves. So what happens when you put a bunch of old ladies in a constrained space? Well their germs flood the place and they spend their days swapping completely normal germs that you or I deal with all day every day, but it kills them. The places can’t be clean enough. The staff can’t care enough.
So what is my take away? My mom wanted to be in PB. She liked it. She paid for it. And when she died she seemed to have no complaints. I don’t know what you have there in NJ but I bet that it isn’t all that great. Maybe she doesn’t need all that great but if you are going to take a look at some of the local joints you might just take a run over to visit Jim and check out Peter Becker and Shannondell.
https://www.shannondell.com/
In the end, we all want a place where everybody knows your name.
Stuck, she doesn’t want to go to a nursing home. She doesn’t want to be a burden to you. There are few good end of life scenarios. If you must go the nursing home route, pick one close so you can visit daily and pray like hell your mother retains her mental faculties.
The people of TBP know how you love your parents and know you will do the best you can. This comment feels clumsy but I am wishing you and your mom the best. With your wife’s issues and your mother you will be overwhelmed. Get help before that happens.
Many years ago my aunts would always say: go visit at times when the staff does not expect you.
I have been raised by my grandparents. So I can give you a perspective. They both died while they were still quite agile. However they had friends – that were childless – and I helped these gal’s when they were quite old.
I say this, not selfishly, you don’t want to take care of your mother 24/7. You and your wife have a life.
I found Dotty (a friend of my grandparents) a nice assisted care facility – you need to shop around – your mother may even know some people her age that like a facility.
Long story short – we visited Allentown and we went to see Dotty – later I asked the management if it was OK to have pizza / beer / wine , for a catered lunch. They said “no problem – they’re all over 21”. So on Friday, I sprang for $1000 and got a nice spread for all 50 people and the staff. It was a great time.
Stuck, me & bro placed Ma in an excellent facility. The way I saw it, 5 options, when she started getting regularly disoriented at her condo, and physical health issues emerged.
1. I go live w her. Can’t. Had to work.
2. She comes to live w me. No, as I have to work, & she’d be alone, and even more disoriented.
3. & 4. Same two conditions, w my bro & his wife. Both had jobs.
5. Senior assisted living, w on site Alzy wing, and Rehab from injury wing. 24/7, 365 care, from good people. Firm, but caring.
Done deal.
Now, 1.5 years later, she passed, RIP.
Any regrets? No, but I have 2nd guessed the decision at times. With hindsight, I could have quit the job, or taken a leave of absence, and went to live with her. Especially after the estate was settled, the financial hit would have been acceptable. I would have probably come out ahead, strictly looking at the numbers, which IS a factor.
But, for me, the personal hygiene duties required were intimidating. Look, I loved her. But, most women are more comfortable receiving care and help from other females, preferably family.
In retrospect, I should have taken up the challenge.
If you can do it, take her in, and nurse her to a more comfortable sailing into her sunset.
You’ll be stressed for the duration, but you’ll emerge from it with a satisfaction, and sense of peace that you guided her through a tough time, while letting her maintain her dignity.
Good Luck, whatever you decide.
All the best, to you, Ma, & the Mrs.
My Poppa Grooch and I made the best of the nursing home life while he was with us… we had a few good days in six months of assisted living/nursing home/hospital runs. I’m glad we did it but one can never be prepared for the total dependence of a parent.
In hindsight you know that you would have come out ok financially, but going in you have no idea. What if she would have slowly deteriorated but lived another 5 or 10 years? Would you have been ok financially then? You made the best decision you could with the info you had at the time.
No way, for the vast majority of lower income seniors they either have to plan ahead to “opt out” by putting the gun barrel in the mouth when faced with being sent to a nursing home because they can no longer drive, bathe, cook, clean, shop etc, as did my stepfather. My Mom went into one after brain surgery caused a stroke and she rapidly went downhill, no socialization once she was bedridden, he nurses only stopped in briefly several times a day to serve a meal or help her to the toilet, but she was so starved for human contact she would talk endlessly when I visited. Most Medicaid facilities are staffed by minimum wage drones and her care was also minimal, they said she would be bathed several times a week but there was never any time so once a week if she was lucky, no trimming of fingernails or toenails, no haircuts, no brushing of teeth, and promptly at 7 PM after dinner they stuffed pills down everyone and ringing of the bell was discouraged so the nurses could have a smoke break outside. The ratio of caregiver to resident was abysmal, these attendants may have started out with the best of intentions but were so poorly paid and overworked that constant turnover and minimal background checks and training had the usual result, fearful residents that wouldn’t speak out about rough handling, thefts from their rooms, cold food and indifference. My stepfather had the right idea, a quick blast and the rest of the family can mourn and move on.
I checked with my daughter, a former care-giver at one of the Prescott, AZ facilities. This is a girl who, as you mention, started out with the best of intentions. I never heard her speak of losing her vision, she remarked at one time that it hurt her to think these poor old guys were at one time top executives, scientists, pilots…in other words, white dudes. I asked her if DR got it right. She waffled –
“Well… do you want the truth or you want me to sugar coat it… It’s a rough job with little pay and we had to have one of the caregivers arrested for stealing drugs. So… no, he’s not right. But he’s also not wrong.”
My daughter is in her last semester in nursing school. Before she started nursing school she had her CNA and CMA certificates. She worked at this “Luxury” facility in a high rent area. This is a corporate chain. Most of them are corporate and the few that aren’t are always full and have a long waiting list. The state run ones are a nightmare but you don’t need me to tell you that.
If you tour them you will be shown the luxury suites. And they are nice. The problem is staffing. She was “on call staff” or fill in. You get paid more that way but no benefits. Many nursing students take these positions at some point in their schooling.
They always seemed understaffed. There were times when she was left in a tight spot, (performing duties that she was not qualified for)because they were short stafffed. High turnover rates are common, even in the high end facilities.
https://www.sunriseseniorliving.com/communities/sunrise-of-overland-park/overview.aspx
My mother was in memory care back in the nineties. She seemed to have good care. I lived 600 miles away so my brother, God bless him, took care of my parents. His kids were grown and mine were very young. I could only visit a couple times a year. He was there several times a week at all times of day to check on her. I think that now days it is much more about $$ than it was back then.
I think our biggest problem is we extended lifetimes with no thoughts of quality of life. That is not to say that there is no quality for older people. I don’t know what the answer is. When they become bedridden, it is a huge problem. It’s not the same as changing a diaper on a baby. They have to be turned every two hours to avoid bedsores. There are visiting nurses and home care assistants, so if they do not have to be watched 24/7 because they have dementia, that is a less expensive option.
It sucks to get old, I tell my 11 year old, 120 lb dog, every time he has trouble getting up off the floor. I feel his pain.
I feel yours, too. My brother and I had many a discussion on what to do before we moved my parents from Florida to Colorado in the late 80’s.
When Nick’s father got to Oklahoma, we immediately took him to the doctor’s office to get his medications transferred and have some medical authority. Over the next week, as we moved him into assisted living and discovered his Blue Cross Blue Shield Senior Advantage medical plan wouldn’t work in Oklahoma; we had to get him into a Medicare plan and get a supplement. It was a strange and bizarre world we jumped into, but that’s kind of how we roll.
So, after we got him settled, we got him tested for competency (he had no short term memory, which was a threat because of medications he needed to take on time) but his decision making abilities were good. He just couldn’t remember what he’d done.
He passed the test. Not with flying colors, but with 76 percent … enough to claim he was not senile. We laughed about it. Then, that dear little man talked to his doctor and told him he wanted to stop taking life-extending medications. He told me he was just really, really tired. After his dear beloved wife died and we finally told him and he remembered, he didn’t want to stick around. Not even to feed my goats.
But, he had the angels bring him by here on his way off the planet. I can sense his spirit.
Stucky,
If your mother can still walk, you can simply move in with her or vice versa. The real question is this- is she still going to be alone during the day if she moved in with you? If so, then it sounds like you will have to hire someone to stay with her while you are away during the day. However, having gone through this with my own father last Summer, when she is bedridden, the burden will become exponentially heavier.
My father had rapidly advancing Alzheimer’s to go along with Parkinson’s Disease, and by the Fall of 2017, he basically lost the ability to think critically about anything and required someone to be with him 24 hours a day. However, he could still walk, and while occasionally he would forget where the bathroom was and piss in the floor, my mother and I could manage the situation and keep him at home. This was made easy by the fact that I had enough financial resources that I could retire early and so I could be there 24 hours a day as necessary.
However, in July of last year, he developed crippling sciatica and lost the ability to walk without me basically holding him up, and within a week, he could even do that, and he was only 73 years old. With him bedridden, my mother and I were getting ready to order equipment needed to deal with such a situation- a hoist and such- we already had the hospital bed that my father had used with his own mother a decade prior. In the end, though, my father decided he didn’t want to live any longer if he couldn’t walk, and stopped eating and drinking 2 weeks into this episode and died 2 weeks later. My mother and I considered having him admitted to the hospital and force fed, but decided against it, and got him in-home hospice care to make the last 2 weeks as painless as we could.
I guess, if I were in your spot today, I would have a long conversation with your mother about what she wants when she becomes bedridden, which is the real decision point. She may actually want to stay with family rather than a nursing home, but is afraid to tell you that, and she may be afraid to tell you that she would want to end it no matter where she is at. At least, it sounds like she is still mentally competent- that helps a lot if she becomes bedridden- my father wasn’t mentally competent and constantly forgot that he couldn’t walk- for two weeks my mother and I couldn’t even leave him for 2 minutes without finding him halfway out of the hospital bed, and because of the Alzheimer’s he was asking to urinate every 30 minutes 24 hours a day. Had my father not taken matters into his own hands and stopped eating and drinking, I honestly don’t know what my mother and I would have had to do to keep him at home- restraints or drugs would have been necessary.
I agree. That is why I’m so glad we had Nick’s dad take a test to verify he was “competent.” He barely passed the test, but when he made the decision to not take life-extending medications after a few months with us and we could all see him fading, it was his decision to make, as it should be.
(Poppa was lonely… while he wanted to be with us and we wanted him with us, his entire life had been spent in Cleveland and everything he knew was there. I went through the old photo albums with him almost every day there at the end. Now I know a lot about Cleveland.)
Never put your parent in a nursing home. Move her in with you and pay for a nurse to visit 3 days a week. Ask me how I know.
There is a point at which you can not handle the other days. fall risks (you can’t lift them), late stage dementia, if they are still ambulatory and can wander off or burn down/flood the house, if they are violent and you or your family cant sleep without being in fear of your life. Sometimes 24/7 care is necessary. We can’t all afford that.
2015 my dad had an aortic aneurysm,stent put in,full recovery–
dec.,17,stent went bad & had to be replaced–while in the hospital he lost most of his strength & was sent to rehab,which didn’t help–
may,18,we had to put him in a nursing home,where he still is,because he did not want to go to any of his kids’ homes because we are a very dysfunctional family–
his mind is basically fine but he has no strength–most patients at his facility are the opposite,memory/emotional problems–because of that he hates it,though he put himself in that situation–
if mom’s mind is ok,check out the homes for the mix of mentally vs physically disabled patients–
back to dad losing his strength–imo my dad did not work all that hard at his physical therapy & the therapists did not push him hard enough–
if your family member is having to take therapy to regain their strength & they aren’t cursing about the therapists being too hard you need to talk to the therapists & tell them to work the patient harder–
addendum–get her in the one closest to you if it’s acceptable to you,& take traffic & traffic directional flow into account–
Stuck,
My Dad died about 5 years ago at 90. Tough S.O.B., WWII Navy fighter pilot. His #1 wish was to stay in his own house. (He absolutely hated nursing homes, had a bad experience with his mom back in the 70’s when she was in her 90’s. He physically carried her out of there in his arms; they told him he couldn’t do that and he threatened to beat the shit out of anyone that tried to stop him!)
I was closest family when he really started to go downhill. I lived about 5 miles away, but was working at the time. We hired in-home nursing care that came to his house daily, and they were wonderful. He could get around, but was getting more feeble and had trouble with bathroom and bathing type stuff. One day the next door neighbor stopped by and his car was running in the attached garage and he’s inside the house asleep! Could easily have been the end right there, and yes, he was still driving at 90. Probably shouldn’t have been.
Anyway, when the in-home nurses said he was getting close to the end, we contacted hospice care, and they put a hospital bed in his living room where he always hung out. He passed about a week later. The hospice people were also wonderful, and I’ve heard this same thing from many others. About 2 weeks before he died, at his last visit to his doctor, the doc told him to go check-in the hospital (next door to the clinic). He said fuck that, and directed me to take him home, which I agreed with and did. So, from my experience…
NO to the nursing home
IN-HOME nursing care – better and cheaper
HOSPICE – they are the pros
It’s a tough situation, good luck and God Bless
Forget the opiods and buy her some CBD gummies. CBD is a natural anti inflammatory and works wonders!
I volunteer at one and the people there are pretty nice! But me personally? Put MY mom and dad in Nursing Home?????? You kidding me?! They cared for us, we should care for them.. barring GRAVE, grave illness or violence….
A buddy of mine just told me that his mom has had Alzheimer’s and has been in a home for the last few years. She hasn’t been even said any of her kids’ names in two years. I told him she probably just needs to find a hobby. That got a good laugh out of him. He needed that. I make smart ass comments about everything. Surprisingly, not everyone finds them funny. My refraining from smart-assery is the only thing I can give you, Stucky. Your mom has a great son. Your brother, I mean. If you do eventually have to put her in a home, it will only be because you’d had to. You’ve got a lot on your plate now. One MN smartass will be praying for you.
Well, My mom had alzheimers and took a bad fall and split her head open. I was the main care guy that kept her in her home for years before the fall. But I also worked full time. After the fall I was down to having to feed her, wipe her, and we couldn’t leave her alone for 10 minutes. We did it in shifts. Anyway, I got an emergency placement in a BC Govt run care facility. It was excellent. The staff became very close to our family. It was part of the BC medical sevices plan, the staff were paid decently and were union so we didn’t have to worry about sub-standard care. In fact, I knew many of the care givers personally. They were awesome.
She started on the wing with simple oversight. After she started ‘shopping’ other people’s stuff and kicked a few residents she was put in ‘the lockdown ward’ which had more staff, and the doors were closed to the rest of the facility. As she declined they moved her to another ward as she was no longer mobile at all. She declined for 8 years in the facility until she finally quit breathing. For the last 4 years she was fed a puree, and the last year she could no longer drink liquids so everything was on the spoon at meal times.
With every move and every issue we had meetings with staff, nursing, a social worker, and management. Nothing was ever done without our approval. Mom had a fall? I would get a phone call when it happened. etc.
When people say, “I would never put my mom (or Dad) in a Care Home, they just aren’t there yet. Likely, they are not the ones wiping his/her ass, hand feeding, or bathing their parent. Trust me, when you have to do it you are doing the right thing.
Because of our medical system we don’t have the private nightmares we so often read about. There was a rogue nurse in Ontario a few years that killed residents with insulin, but psychos can be anywhere. I have nothing but good things to say about our experience. Of course my mom, the WW2 army nurse veteran would have been horrified at what happened and would have preferred to have been euthanised to be honest. But by the time patients are so far gone they would rather be dead, they no longer have bthe ability to kill themselves.
I wish all of you the best as our parents age and decline. Our turn is looming. No one, NO ONE ever thinks it will be them, and no one wants to be there.
Oh, when I say Ward they were actually like big patio homes with a central garden. Everyone had a private room and on nice days I would wheel my mom out into the garden and talk to her. There were maybe 30 rooms that surrounded the central garden areas. There were also raised beds so the residents could putter and love the tomatos to death by overwatering. Guys that smoked had a shelter outside with chairs. It was okay.
Oh yeah, we did not have to pay for anything out of pocket. My mom was assessed 80% of her income, and the reest we banked for ‘extras’. If someone made $1,000/month pension they had to pay $800. Of someone made $10,000 a month off investments chances are they had private care at home or were in a luxury private care home.
I made a couple comments replying to others below. We’ve lost all of our parents, some in a decent way and others not. Like everyone, we did the best we could with the information we had at the time. Some of the information was good, some not. The best we could.
Our best is all we got.
Love the old guy dancing.
My Poppa Grooch was in a wheelchair all the time the last months but he loved Sinatra, Jerry Vale and other of that era. If he could have stood, he would have been like that old guy but his legs gave out about the time his lungs gave out. Sixty-something years of smoking and working around steel mills in Cleveland in the 60s after Korea took its toll.
The day before he died he called all his family in Cleveland to hear their voices one more time, while I explained to them his decision. I swear I watched him become pure love and light that day. Nick was holding his hand the next morning listening to his favorite Jerry Vale album when he stopped breathing. It was the best we could do.
I know you will do the very best thing you can do based on the information you gather. My novena praying friend jumped right into the Lenten prayer chain game and invited me. I declined, though I have decided to give up bitchy for Lent because I like the way it sounds.
As a counterpoint to my story about my parents, Hubby’s parents bought a duplex in a 50+ development. Two bedroom single floor living with ADA capability but no services beyond yard and road maintenance. When Hubby’s father died his sister moved in to take care of Mom. The sibs made sure that she was paid some and the ones who were close enough came to help out when they could, but it was more than a full time job because she was on duty 24×7 for whatever Mom needed. I’m fuzzy on dates, but Hubby’s sister took care of her Mom at least 5 years, maybe more. It was workable but very hard on Hubby’s sister for a long time and not quite the same as Mom being able to stay in her own home. At some point your mother will need someone with her 24×7 and you’ll have to figure out how to make that happen while you also take care of your lady. Hard choices.
Thanks for the insights, guys. We haven’t had to deal with this yet with our parents and not looking forward to the day.
In the process of turning my 1600sqft shop into mother in law unit. I’m a FF/paramedic. Years ago,during my internship,I worked down in Grass Valley ,CA. 40% of calls are to con homes. Most depressing time of my life. Don’t do it. Even the so called high dollar ones were absolute nightmares!
You have to visit regularly, any day of the week, and all hours of the day. They’ll hate you for it, but it keeps them on their toes. Even then it’s a crap shoot, and it is getting worse every year due to identity politics.
Home care can be rewarding. Unfortunately for you, your mom sounds like she’ll need care that limits her to one floor and constant supervision. Do you have a support system for you to provide support for her? Perhaps more importantly, will she listen to you rather than her mother’s pride? It’s a lot to consider. Good luck.
We recently had to put my Mom in a Memory Care Center after she had been living with my family and I for the last 20 years since my dad passed away. It’s been a life saver. She has Alzheimers and unfortunately, one of the many side affects at her current level besides terrible short term memory and quick temper, is a complete lack of personal hygiene care. We could not manage this for her. Luckily, between my brothers and I and her Social Security and VA benefits we could afford a nice place that we really like that is nearby ($5k/month in suburban San Diego). There are probably 50 residents. They have daily activities for every level of patient that keep them busy, entertained, participating in life, and fairly happy. We can show up any time we want and the people managing the place and taking care of her are excellent (at this price they should be). Her hygiene and spirit are both greatly improved and she doesn’t spend days at a time lying in bed. She pays 1/2 of the bill with her resources and we split the balance among 4 brothers.
Obviously, this is not a nursing home with on site medical care other than prescription management, but they managed her care after she had a bad, non bone breaking fall and could not get up by herself to use her walker or wheelchair. After 3 weeks of caring for her as an invalid at home we decided to take the next step and place her in this facility.
It depends, Stuck. Sorry you are in the situation where making this decision is necessary.
I think in siuations where Alzheimers is involved, there is little choice.
I think Admin provided an admirable answer.
Contemplating the question and reading the comments brought back some painful, bittersweet memories Stuck.
Dealing with dying parents is sort of like preparing for societal decline. It happens slowly at first and then suddenly.
My ma rued the day she would share a nursing home with my dad because she knew he would always be the center of attention; and she couldn’t bear the thought of him flirting with the nurses and vice versa. ? He had that sort of personality, in a light-hearted and good-natured way. She was proven correct too; although she never lived to see it.
When Mom’s legs gave out, the hospital put her in a nursing home for physical therapy. It was a bad place; smelled like urine, and they over-medicated her – so I got her the hell out of there and back home.
We did home care for a while, but it was hard. She said she would never go into another nursing home and she was right.
After she passed, Dad eventually desired the community of a retirement complex / nursing home. He was in a swanky place where the nurses treated him like a king. The place actually had a pub and an open bar every Friday.
So to answer your question: The wrong nursing home will be the worst decision you could make. But the right care facility, the best. Furthermore, the parental patient’s attitude makes all the difference as well.
Personally, I just tried to honor their wishes in the best way I could at every step of the way.
So maybe do some research and keep in mind the best places often have waiting lists. But before, during, and after, I just got the Administrator and staff to like me first, before I had them do my bidding on a daily basis.
The best we can do, is all we can do, ya know?
Hang in there, Pal.
Sadly, the term “nursing home” is used generically to mean any place that delivers nearly any care to someone. The variety is as wide as the needs of individuals, as is the quality of care. Lets begin with the fact that your mom sounds like she has all of her faculties and has admitted that she needs more assistance that appears to be deliverable at home.
First, look into ALL the home care options that can fit within her/your budget. Every time I turn around there is another commercial for another company offering new options. Explore what you can, but remember, regardless of who they are, how much you are paying, how great their reviews are, you MUST watch them like a hawk (and that goes with in-patient stuff too – obviously).
My mom was unable to take care of herself because of Alzheimer’s. I convinced her to come live with us across the country, and we thought we were prepared to make it work. It was pretty obvious in the first week that it was not going to work. My mom was on no medications to relieve the anxiety that comes from the loss of short term memory and other cognitive functions. She was threatening me and my wife daily with murder, arson, etc. She had 2 falls in our house (likely because of her anxiety and its impact on her blood pressure), and we found ourselves with no other choice but to look into a dedicated memory care facility. We also had no idea just how bad her alzheimer’s was until she was out of her own home. Psychiatric care plus medications and a great facility, gave my mom the care, activities she needed, good food, and pleasant surroundings she deserved, for the last 2 1/2 years of her life. I never thought that I would ever put her somewhere like I did, but the hope option was clearly non functional. So that’s my back story and foundation.
Only you and your mom know what care she truly needs, what assistance is required on a daily basis, what tasks need to be addressed, etc. (food, incontinence, showering, etc.). You should begin by fully understanding these needs and BEING HONEST about them (both of you). What she needs/requires dictates more of what kind of facility she needs than anything else. Skilled nursing facilities are more about the end of life, where 24/7 care is required, while something like an assisted living facility can often provide significant assistance with meals, showering, etc. and still allow lots of freedom, choices, and flexibility. Definitions of these types of facilities can also vary from state to state. I am using the terms from Georgia. Because of what I read on other’s posts, let me add also make sure that you and your mom have an HONEST discussion about end of life issues, what she wants, and GET IT IN WRITING in a living will or similar document (as defined by your state’s laws). If she is willing to give you medical and financial powers of attorney, get those as well. Shit happens, and the more you have the ability to take care of her needs, the better off she will be. Financial stuff is very hard for these folks (my mom was 84 when she died), but ultimately you have to impress upon them that if something happens, the alternative will be you having to pay a lawyer and go to court to get custodianship of them in the end anyway in order to take care of their medical and financial needs.
Bottom line however, is that any facility relying on government money is going to suck, while the more YOU pay, the more you will get in the way of quality, etc. But YOU need to be on top of them all the time, so find somewhere as close as possible and drop in at all hours of the day if you can, just to keep them on their toes.
Every place is generally understaffed. So many are run by big corporations these days, and you may find smaller places that remain private. Often times smaller also means less going on. Activity level, entertainment requirements, etc. are also something your mom needs to be HONEST about. At a memory care facility, activities are paramount, but at most assisted living places there is generally the assumption that most folks will be entertaining themselves most of the time.
There is no pat answer for what you are facing. You and your mother MUST be prepared to walk if the place sucks and she isn’t getting what she deserves. That is a far more challenging thing with dementia patients, so consider yourself blessed in this situation. If you and your mom get along well, use that to your advantage, make her part of the process of selection, and be as open and honest with her as you possibly can and tell you to do the same, especially when it comes to her care, how she is being treated, etc. What some might consider “neglect” at some of these places often comes down to staffing and priorities. If a resident needs to be cleaned up because of a bowel accident, that could occupy a caregiver for 20 minutes or more (if really bad). Everyone else will simply have to wait. Finding a place that is not heavily populated with folks in need of lots of care would be a good thing, but realize that everyone declines, so the makeup will change over time.
Do check ratings of the places you are considering. Do check out “A Place for Mom.” There is no charge to you (the facility pays them the first month’s rent for the referral), but they can often help you uncover places in the area that are not going to show up in other searches, in the Yellow Pages, etc. Sadly, this is a very insular market, and nobody tells you anything unless they are getting a kickback or similar. But the more places you have to choose from, the better, so look at every place you can. One advantage of A Place for Mom and similar, is that they can often narrow down the search and weed out the places that simply don’t fit because of mom’s care needs, level of independence, etc.
Best of luck. Its a hard road, but a fulfilling road, paying it back to the one who birthed you. Just remember. You can only do what you can do. Nature has taken her to this point. All you can do is try and find the best, safest, and most appropriate place for her to finish the journey.
Haven’t read a word of the article nor the comments because I’ve lived this so hard & so long that I can answer like a steamroller on Overdrive:
What do you think of Nursing Homes: utterly irrelevant.
You ‘own’ them – 2 miles, several times a day – rarely back down – rarely will anyone fuck with you. You will lose huge (most family/ $/ your personal life/ marriage, etc…) – but Mother will never lose. A Nursing Home is a building, not an excuse nor a problem. Own yours.
They told me I’ld feel it when she was gone – wrong. Held my head high at the funeral, never questioned my conduct, never mourned her loss. We (Mum/ Dad/ I) won – no B.C. citizen received better. Alzheimer’s.
Brother had to ‘stop the presses’ on the Obit – Brutus, Mum’s Shih Tzu, was way higher in the Obit than Brother’s gang. Fucking right – Brutus sat front row, wearing his best, knitted by Mum. At 3 months I told him: ‘STFU. Your job is to lay quietly in Mum’s lap nightly for 60 to 90 minutes.’ He did. Brother’s gang didn’t. Be there. Watch. Advocate. Ruin family dinners. Stand proud. Recreate Mum’s living room in whatever building materials constitute a ‘Home’.
My proudest moment in Eldercare was filing a FOI under my POA & learning that I was cited as a potential source of Elder Abuse – fucking right, you pull any shit on Mum, you will be abused. Fucking CEO of the Care Home was personally outside awaiting us once Social Service told her what was coming. No one should enter a hospital/ Care facility without a dedicated Advocate. Be it.
75 residents, 2 had family regularly there evenings. The other guy & I still hug in public – we watched ours die. Only 2 out of 75 had the balls. Only one had a Wheelchair van permanently in the Parkade.
‘Dad, van cost $1500 + 500 repairs, sold it for a thousand – cost you & Mum a thousand bucks.’ Moment’s hesitation from a Glaswegian who grew up during the Depression & gained Journeyman status under nightly Luftwaffe waves: ‘Good, well spent.’
Night nurse phoned 6 AM: Passed away. Arrangements?
Yeah, what’s the bill for the run to First Memorial?
$75.
Agreed. Do it please.
Mum was 1st gen from Edinburgh, UBC Home Economics – yeah, unquestionably – you overbill & I’ll run the body in her own van – she would be offended were I to accept less.
The night she busted both legs at Brother’s babysitting she called me: ‘Dad will be angry but… ‘. So I told Dad ‘Gotta get Mum, no criticisms.’ Ambulances were for those in immediate need. Never crossed our minds to call one. Set her in the Tercel, pulled into LGH Emerg. Socialism died before it moved here.
…. and would you put a loved one in one?
Get real – you’re talking suicide – yours. Mum goes in so you can live – show love through her, & your strength, not through self-abuse. Mum needs you, not a cross-eyed drooling wreck wasting away in front of her eyes.
Own it. Stand tall. Fuck the 2 X 4’s.
‘A house is built of bricks & stone
A home is built of love alone.’
I think we an Ancient Gaelic to TBP talk translation there, pigman.
I gather your mother was put into a nursing home against your wishes and you feel she was treated badly. You got a freedom of information writ and discovered YOU were listed as a potential threat to her, which pissed you off because you really thought she should continue to live with family, in a home.
Am I right? Are you from the Land of Ire?
https://www.theatlantic.com/magazine/archive/2014/10/why-i-hope-to-die-at-75/379329/
My mom told me once that she figured she would just die at her desk at work (in fact HOPED that would be the way she would go). She worked until she was 75. I believe that her Alzheimer’s was already having an impact on her performance, when she was given the option of layoff or retirement. She took retirement. Because of this mentality, she never made ANY plans as to what she would do with herself or her life after she stopped working. The Alzheimer’s got worse once she was alone in her home with no daily social interaction. Its a long story, but eventually she passed away 9 years after retiring, in a memory care facility, basically unaware of much of what was going on around her. The only way to “hope to die” is to make it happen. Otherwise, mother nature usually has a pretty shitty plan waiting for most.
Both my husband and I sacrificed much of our married lives/family lives to look after both my parents over the last dozen years or so. He knew when we married that I would never abandon them to a nursing home and he agreed with me. Yes it has taken a toll on our marriage, intimacy,privacy and personal time but we have no regrets. Yes, I missed out on contributing to my pension, developed an chronic illness related to the stress of caring for them both in our home for years and yes, we still have a damn mortgage chasing us into our 60’s because of it all. But in spite of all this, it was worth it. It was worth watching my teenaged and older children pulling together and helping to care for their grandpa who was failing; who needed toileting and feeding and dressing. He loved them dearly and they were able to show/return that love and grow much in the process. I saw my children become compassionate , charitable and caring. I saw my husband doing the same care, helping me to carry the burden; what a true marriage is all about. We learned to truly love as God asks us to do. It’s what we are called to do if we are to call ourselves Christians. Honour your father and your mother.
You are asking for the right answer to a question that has no right answer. All the choices at the end narrow to the inevitable. Whether at home with you or in a nursing home the process and the end are not good choices. We all hope and dream that we can die quickly and peacefully in our own beds. Unfortunately, that is not the reality for the vast majority of us. There is a good book on that subject called “How we die” by Nuland. I didn’t sleep well for months after I read it.
I wouldn’t begin to tell you what to do. I can only tell you what happened to me. My mother in law had pulmonary fibrosis and also after a lifetime of really poor eyesight finally went totally blind. My wife was the primary caregiver and spent literally years shuttling her to doctors trying to maintain her sight. I was largely in charge of the finances. The paperwork, for those of you who haven’t experienced it, with Medicare is daunting. She had decent income from SS and a pension from her long passed away husband, but minimal savings which we eventually burned through and had to supplement ( other siblings were willfully ignorant of this).
Pulmonary fibrosis causes the body to expend tremendous amounts of energy just to breath and therefore maintaining weight is impossible, all the food energy goes to breathing. I can remember taking her in our car to the doctor and the child alarm would go off because she was too light in the front seat.
Eventually, we choose to put her in a nursing home. We checked the place out beforehand and actually were on a long waiting list to get in. It was right up the block from where my wife worked so she was able to see her often either lunch time or on the way home from work. It was nearby enough to our home that we could bring her to our house on weekends. We thought this was a good compromise, kinda half in and half out. Having her stay with us full time would have been very difficult, there were no bedrooms or bath downstairs in our home so it would have required some sort of build for us. No matter what with her condition we knew it wouldn’t be for the very long term. So, finances and what little we had and worrying about our own eventuality with our home being a big source of what we would need to survive we didn’t think that a good option. We thought, perhaps selfishly, what happens if we spend all this money on making the modifications and she dies soon after. We will have squandered what little we have and be in a much worse situation than she was eventually. Plus, both of us worked all day (me 10+ hours with commute) so there would be no one around all day and she did not adapt to the blindness at all.
Do you hear all the rationalizing? It is many years later now and there is still a lot of guilt that we could have had her with us at home or done more. But I truly believe that guilt would have been there even if we had done that. What would we feel like if we found her dead on the floor in our home instead of having medical staff there to rescue her? Which was what did happen. As I said, there are no right answers we are just stuck living with the choices we make.
I can tell you that the drain on us, particularly my wife was huge. Our children had grown and had moved away and perhaps we may have sold our home and moved away too. But we could not do that and abandon Mom. Although she had a decent income, we had to supplement some to maintain her in the facility and at the end every nickel and dime was being counted. My wife felt a lot of guilt initially and it wasn’t until years later, when all the doctor trips, all the bills, all the shuttling back and forth to the facility, all the visits, all the time spent, were over that she realized how much she had given. We sold our home shortly after she passed and began to resume our lives.
No matter what your choice, you will feel remorse and guilt. Try to remember it really isn’t in your hands after all is said and done. No matter your choice you are putting your own life on hold for the duration and their suffering is yours.
I looked it up… am probably going to hold off reading it until I finish getting well. It looks a bit sad to someone who’s recovering from other sad shit.
https://www.goodreads.com/book/show/49286.How_We_Die
Ah… the introduction to eldercare issues. No one can fathom what kind of a bizarre world one wades into when you start trying to figure out which charges are from the assisted living center’s medical service, which can bill Medicare or other medical insurers and which are private pay related charges for services which, at best, were inadequate but at least available. In either case, the price was too much for too little.
I think the highest private payment we made was about 5 grand a month, but every time he went into the hospital for more than three days, the Medicare “rehab” clause could be activated. It is a strange little game the local hospitals, doctors and nursing homes play to maximize the moneys which can be funneled out of the Federal government for private, for-profit care.
The Eldercare Industry is hugely profitable to someone. Think about it… people with the largest collection of wealth accumulated planning to live well into retirement? How do we get all their money while convincing their families what we’ve done to their standard of living is in their best interest?
You change the meaning of the term. Nursing Homes are now places of Independent Living which equates to away from family who have their best interest at heart. By getting the money changers involved, they changed the whole meaning of Elder Care (the lawyers with their annuities, trusts and front-loaded investment schemes to get the elders spent down so they qualify for Medicaid!)
So, you can tell the ones who had families who realized their infirmity was the opportune time to grab the money saved all their lives. They were spent into Medicaid status and left for dead by someone.
And, that is when Nick signed Poppa Grooch out of a facility in Ohio for an afternoon, took him to the airport and flew away to Oklahoma, where I met them at the airport with a portable oxygen regulator. It was a fun heist.
Other things did not work out so well. But, given the information we had at the time, we did the best we could.
Excellent post Double D, it is a sinister racket. I’m going to hire a couple of illegals to cook and clean until we are no more. Watch them hit the downer button..heh.
In the south we always just hired a kneegrow who stayed in service to the family for decades and cared for them even into the elder years. Upon death they were always remembered in the will. That is longagoandfaraway now.
Dear Stucky, Thank you for your sharing the personal things most all have to deal with eventually. I have read much wisdom in the comments.
A sharp mind and dull body seems to me, makes for difficult choices. May you find peace in what you decide.
I was the first family member to see my father after his third aortic aneurysm surgery that left him paralysed from the nipples down. His throat filled with tubes, unable to speak, he pleaded with his eyes for me to pull the plugs on the machines that kept him alive. We knew if he ended up paralysed he did not want to continue with his journey here on earth. I told him nicely that yes, his wishes will be honored, in due time. Ten days later he died from kidney failure. Many were able to come say their final goodbyes. His biggest reason for wanting to die was he loathed thinking of what his faithful wife would have to endure with him bedridden. His stoicism in the face of his choice demonstrated courage I only hope to have when my time comes.
My mother’s sister died in a nursing home. She had to relinquish her very modest home but her care was paid for by various government means. The last time I took mom to visit her sister her sibling was bedridden and no longer recognized mom or the son who visited regularly. The place was clean and the staff were civil and pleasant. My aunt shared a room with another indigent woman and long time resident. A black woman who was a vegetable yet had a pulse. As my mother, cousins, nephews and a grand niece were visiting, there was a bit of activity inside the curtained area of the old lady. She died during our visit. In some ways I almost believe a pillow was quietly applied to help her on her journey. It was a quiet and dignified death in our presence.
My mother had lived across the lake from one of my brothers. When her mind began to show dementias my brother made his attached garage into an apartment for her. As she deteriorated the emotional strain on my brother and his wife began to show. They both worked full time jobs and the relentless attention mom required taxed their patience to the breaking point. I live 200 miles away and mom’s last year of independent living she stayed with me most of the time. She was senile. Asking me the same questions 30 or 40 times a day. Pooping her pants with regularity and steadfastly refusing any discussions of diapers. She would graciously allow me to place her in the shower sitting on a chair to clean her up. I am immensely glad to have had the time with her! We watched game shows and Judge Judy. And we would smoke ciggies on the balcony deck and watch the boats go by and the lights at night across Santa Rosa Sound. I enjoyed posting photos of her on FB for family to see. However I was a prisoner. I could not leave her alone for more than a trip to the grocery store.
Eventually we placed her in an assisted living facility in state capitol where my brother lives. “The best one in town” that had all the extras. I came to realize it was assisted dying at it’s best. It was not a fun place to visit despite the amenities. She had her own room with her nice furniture from her home. On one visit I found her toilet seat smeared with dried feces. I cleaned it up and chalked it up to institutional normalcy.
They found her dead one morning, kneeling at the edge of the bed. I assure you she was not praying.
My experiences with senescent and demented individuals as client/patients taught me their dental problems were mostly minimal despite plaque covered, cavity ridden teeth. It was gratifying AND sad to have children bring in their parents, worried and concerned about the unsightly dentitions of their parents. Despite opportunity to pad my collections report I came to believe a Laissez-faire approach was best. Procedures normal and routine became too taxing to impose on ones who could not understand the reasons for it.
Peace be with you.
Been busy busy very busy since I posted this.
Thanks for the great responses! KeyserSusie said it all —> ” I have read much wisdom in the comments. ” Indeed!!