Blfenton, so sorry for your loss. Having just lived through this myself, I am glad your mother did not linger for too many difficult years.

My mom diied in February at age 105. Her final years were so difficult. Things would have been much better if she had moved to a retirement community many years ago.

For those of you planning to age in place, have you really thought this through? Someone has to be in charge of your finances, house upkeep, managing caregivers, and so much more. I know this because I had to do it. It is far more expensive to have live-in help than to be in a retirement communtiy with increasing levels of care. I looked into skilled nursing in a beautiful facility for my mom. Cost was $100,000 a year plus many extras. For two years of in-home care, the cost was nearly half a million dollars, plus as the usual expense of keeping up a big house.

Now I am dealing with settling her estate plus cleaning out a huge house that is packed to the gills.

I plan to stay in my house while I can, and use that time to clean out my stuff. When it becomes too much for me, I will move to a nearby retirement community.

This is timely for me and I appreciate you all sharing your experiences. My mom (78) and her husband (90) were living in his home which is a geodesic dome with no first floor bedroom. The house has spiral staircases going up and down.

In November, he took a fall and was hospitalized for quite a while then moved to a rehab facility. I convinced her to stay with us, she had been showing some signs of memory loss and I was nervous about her ability to care for herself. She fell a couple of times and spent about six weeks at a rehab/nursing home facility near our house. His kids brought him home with Hospice and he died while she was still at the facility.

HIs will left the Dome Home to his 5 kids, most of whom are broke. I knew my mom wouldn't be able to live alone there, so she vacated her life tenancy and the kids put the house on the market. We all worked together to get it cleaned out. I can't tell you how much crap they had in there. Her husband saved everything. Thinking about it now I just can't believe that we got it cleaned out as fast as we did. The house is on the Market now, it's a beautiful location, but I'm not sure anyone is going to pay what they are asking. I'll add the link for fun.

https://www.realtor.com/realestateandhomes-detail/37-Amy-Brown-Rd_Mashpee_MA_02649_M47361-01560

Mom has been staying in our dining room since her return from the rehab facility. She can't manage the stairs. We've had PT through medicare and eventually found a private pay one who helped tremendously. The hard part is that she just sits and watches TV all day or looks at Instagram. I finally convinced her that an assisted living facilty would offer a better life than she is living at our house. She is moving in next week. It is ridiculously expensive, but her husband left some money and I think this is the best use of it right now. Wish us luck! I feel like I'm prepping my first for Kindergarten hoping she will make friends and participate.

All of this has made me 100% convinced it is time for DH and I to downsize. I'm 57 and he is 65. Our house is too big and the pool and landscaping are just too much for us to handle at this point. As soon as we get my mom settled we are going to really work on getting our house ready. We have a rental house that was my Mom's and our plan is to move there and keep our eyes open for a condo. We know which complex we'd like to be in, but there are no guarantees that a suitable unit will be available. I feel very fortunate that we have the option to wait and see how it goes.

Bottom line, I will not put my kids through this. My mother's lack of concern or planning really makes me mad some days. DD has been super helpful through the whole process and she doesn't deserve to have to do it with us too.

My heart goes out to all of you in the throes of this. LIfe really is one thing after another sometimes.

Beth

100k a year is a bargain especially for skilled nursing in a really nice facility. The average monthly cost of a room in nursing homes here exceed $15,000/mo, $180k/yr. Average. Some Four Seasons are less than that.

Blfenton and dedtired, so sorry for your losses.

I have helped care for my grandmother (caregivers and then on to AL), and both parents. My mom lived 5 months after her cancer diagnosis and I am so thankful we were able to keep her at home. We had help from caregivers. She had planned to go to a hospice facility but we just could not bear that idea. My dad went to AL for just about a year. For a year or so before that my sister and I helped him (mainly cooking, light cleaning, etc.). My MIL is still living (85) and in excellent health, alone in her own home.

Of course it depends on your health, mobility, etc. as to how long you can stay in your home. My husband and I built our home with plans to stay here. One level house, two entrances with no steps, front door has two steps. We are early 60s and do our own yard work, cleaning, etc. At some point, I'm sure we will need help with those things, at least our large yard. Although we do not have children, our closest friends (family to us) have two sons who already talk about being there for us. We are very close to the boys, their wives and children.

We love our little country area and are hoping the assisted living facility being built here will be a good option for us, if/when the time comes. Until it is finished, the closest facilities are in the bigger city - although the one my grandmother was in and now the one my dad was in have closed. So sad. The one my dad was in was very nice, he was one of the first patients. It opened just as the pandemic was beginning. It has been sold and will now be a residential drug treatment program. : (

My DH and I made a pact - both of our fathers died way too early but our mothers were never, ever moving in with us. I know myself too well and I would have wound up giving up my life for them and that would not have been healthy for me or for our marriage or our family. I agree with this wholeheartedly! Neither of my parents would ever do that to us, but my MIL would probably jump at the chance, and it would never work out.

My MIL had Alzheimer’s and had in -home caregivers around the clock for five years. IMO she would have been far better off in a good AL / nursing facility but the kids wanted to “honor her wishes” to stay in her own home. Those wishes were expressed for years almost as a mantra. She didn’t like the idea of leaving her home regardless of how inconvenient it was for her and everyone else.

At some point you have to do what is best for the health and welfare of your parent regardless of what they said they wanted. IMO we should do what is right for the situation and the person, even if that is not ”what mama wanted.”

Agree wholeheartedly that most people wait to move to an AL until they are too old to acclimate to it. My mother really should not be living alone at 90 but at least she is only a mile away and I can easily see her every day.

3 Katz - your comment that it would be better to have people around you rather than living alone at home can be crucial as we age and is one of the reasons we chose to move to this over 55 when we did. I already knew a few women from my water classes before we moved here and since then we've become really close friends. During Covid we walked daily and our companionship was definitely beneficial therapy.

We often joke that when the time comes we'll all move into the local CCR together. Odds are that I will outlive DH and I can easily remain in this home. But if I become home bound then I too would prefer to live in a care community of some type. I am lucky that my kids are relatively close and we've shared our thoughts with them.

Kswl - Thinking about your MIL's arrangement makes me shudder and it fits in with Dedtired's comment about the cost of staying at home with around the clock care. I pray that I have the grace to acknowledge that and make the decision at the appropriate time. You are also right when you mentioned that we've had similar experiences. I thought of you immediately while DH was waiting for his test results (Gleason 8). Your mother is truly fortunate to be able to live in her own home and have you so near.

Maire

My MIL had Alzheimer’s and had in -home caregivers around the clock for five years. IMO she would have been far better off in a good AL / nursing facility but the kids wanted to “honor her wishes” to stay in her own home.

Why do you think she would have been better off? Just curious. Other than the cost, round the clock care in one's home sounds like a very pleasant option for her. How was it inconvenient for others?

I, too, wonder why staying at home with help is difficult. That seems ideal. It is not something everyone can afford, though. I took care of my mom in her home until she had a precipitating event when she was 85 and moved to a nursing home for almost ten years. I visited a time or two a week. She received excellent care in a lovely facility, but was mad as a wet hen at her circumstances. My mother was not a burden to me.

An older person’s perspective; I have children older than some of you. I can’t imagine any of them moving to a 55 and older community, much less my husband and me.

We don’t all dodder. We celebrated our 55th Thursday. Yes, we depend on our children and grandchildren for some major tasks and pay for others, but we also help them with things like babysitting. We are not a burden to the kids. It isn’t because we are being obstinate or can’t see the trouble we are causing, it’s because we are still capable of living happy, fulfilling lives.

I, too, wonder why staying at home with help is difficult. That seems ideal. It is not something everyone can afford, though.

Yes, to me, that is the only downside.

My mother was not a burden to me.

This depends entirely on the person and their physical and mental limitations, though. I had a relative who had dementia and took to peeing in trashcans around the house!

Well, my mom couldn’t remember my name for the last couple years in the nursing home, but she was still active and she didn’t do that, thank goodness! I imagine the relative would have been very difficult to manage no matter where or with whom s/he lived, refusing to wear appropriate under garments. My mom was easy, all things considered.

My MIL was basically isolated and declined much faster than she would have in a social situation. The caretakers were from a service and were a constantly changing cast of varied abilities and intelligences. Someone had to check on them to make sure they were doing the basic care expected. She was difficult to get in and out of a car so they just stayed inside and she watched tv most of the time. They also ignored the house and the dishes for a day or two until one of us remarked on it, and when something went amiss with the house they did not report it to a family member until it was an emergency. And yes it was ungodly expensive but that was not an issue. To me it was a questionof zero value.

Whew, this is THE topic right now for many people I know. We had to put my mom in a nursing home after an extended hospital stay from which she never fully recovered. It was a beautiful facility, with pretty walking paths, deer every day, and some truly lovely caregivers. Despite that, she was bitter about being there. The only negative behavior I really saw amongst staff or caregivers was the pandering and condescending tones which seem to be directed at the elderly all too often. Some staff members would enter her room and simply say, "Good Morning, Joyce, how are you this morning?" just the way they would to me. Others would enter with singsongy, babytalk kind of voice, "And how are we this morning? Are we happy, happy, happy? Ready for brekky?" My mother used to roll her eyes, as would I in her situation. I just hate that this happens too frequently with older people, and I don't understand why.

While many of my friends are sorting through this with their own parents, we are also hyper aware that our own days of considering our housing/living situation may not be far around the corner. I abhor the idea of others making decisions for me. Of course, I also can't bear the idea of being a burden to anyone, but I also don't want to be prematurely put out to pasture. I'm a social person, and would love an apt. within an independent living setting at the right time. But I'm also not a group person and don't want anyone orchestrating my daily life.

I hear you, Best. I dont even thing we should talk to children that way? Who invented that? Everyone appreciates being spoken to respectfully.

My MIL was basically isolated and declined much faster than she would have in a social situation.

I guess it depends. AL "social situations" can be delightful. Sometimes they veer toward preschool though,. AndI think, but don't know, once you get into skilled nursing/nursing homes, you start to get "social situations" that are more disturbing than uplifting IMHO.

The caretakers were from a service and were a constantly changing cast of varied abilities and intelligences. Someone had to check on them to make sure they were doing the basic care expected. She was difficult to get in and out of a car so they just stayed inside and she watched tv most of the time. They also ignored the house and the dishes for a day or two until one of us remarked on it amd wjen spmething went amiss with the house they did not report it to a family member until it was an emergency.

Sounds like a staffing issue, which is a common problem. Even if the aging at home concept is affordable, if the help simply isn't available in one's area, that makes it untenable.

Neither I or my husband will live like that.

If you or your husband are diagnosed with Alzheimers/dementia how will you avoid it? If you have dementia you basically just exist.

My mom died 3 weeks ago of dementia at the age of 94. She was non-verbal, in a wheelchair, had to be spoon fed, was incontinent. But, she still had a twinkle in her eye and she was very well cared for in a private facility. She was clean, always dressed very nicely with her hair done. I don't know whose clothes she was wearing half the time and really didn't care. But yes, it was expensive.

If you (generic you) don't like the facility then move her, if you don't like the way things are being done then go on the family advisory board (my mom's facility had one), speak up on her behalf.

Our family had one rule - always, always, always treat the staff with respect and exchange pleasantries. They have a tough job dealing with residents who act out and family members who treat the staff like dirt. We also told them right from the beginning that if our mom is acting out feel free to give her an anti-anxiety med. It calms her down, makes her happier and makes it easier for the staff.

Fortunately they only had to do that once sun-downing began.

I hope none of you are ever in this position with a family member or with yourself. But it could, and does happen.

There are so many aspects of the care at home vs facilty discussion that remind me of the stay at home mom vs working mom debates. Those were difficult decisions, too and many mom's felt judged for their choice. As in those family decisions, each care situation is unique and it seems prudent to create a plan that will allow one to stay at home for as long as possible AND make a move when desired/necessary.

My mom was diagonsed with mild cognitive impairment in 2009 which progressed to Alzheimer's Disease. She lived more than 300 miles from each of her children, so we were able to easily convince her to move closer to one of us when it became clear she needed a little help. She moved into an independent living facilty and loved it. Lots of social activity, she had a boyfriend, and they danced, went out to dinner and had a wonderful time. As Alzheimer's is a progressive disease, her needs changed as she moved through the nine stages. She lived in the end stage for more than a year and it was so, so difficult. Bedridden, non-verbal, completely dependent and opened her eyes rarely if ever. She did open her mouth when spoon fed and that is what kept her alive longer than she would have wanted in her condition. She died 7 years after diagnosis.

While she had a living will and a DNR, current state law (in most of the US) requires spoon feeding if in a facilty. There is actually a case where a husband requested the facilty to stop spoon feeding his wife in end stage dementia and when the facilty refused, he attempted to take her home and the facilty blocked it on the grounds that his intention was to cease feeding her.

There are currently two states that I know of - New York and Washington - that will allow for a ceasing of spoon feeding as an option in a living will. It is a complicated issue (and a little tied up with the right to life cause) but I am taking the New York form to an attorney to at least have it included in my living will paperwork so my family will clearly know my intentions even if it is not leagally binding in the state. If I were to be diagnosed with Alzheimer's in the future and am cared for in a facility for any time period, I would want my family to move me home and cease feeding when I reached this stage. Alzheimer's Disease is a particularly long, debilitating and costly condition. And, in my personal experience and watching other families, a uniquely difficult and depressing condition for family members. Ugh.

Fortunately they only had to do that once sun-downing began.

My maternal grandfather was a sun-downer. Mom and Dad interviewed and told three nursing homes about his issues. Two said they would take him. First night he through his room phone as a worker. They said he could not stay. Second one, the same but no phone was thrown. He was very verbal (this was never his normal previously). Luckily (?) he needed an emergency surgery and was never the same. He died about 2 months later. Since he was bedridden and had declined so rapidly, the sun-downer phase was gone.

@Sherry8aNorthAL I get it. My father said he would never be bedridden like his father was (for 2yrs) or suffer from terminal illness. He had been diagnosed with prostate cancer and told only two years to live. When a friend had metastasized protate cancer he said "you know I will not tolerate a painful death." But with surgery and treatments he lived decades - I think he actually hated that. So, I always thought he would end his own life eventually. Just never thought it would be weeks before Mom passed away. And not at 81yo. But the pages he left behind, written over two years, made it clear he had always planned not to live to the point of not being able to travel, drive himself or enjoy life as he saw. Being a narcissist was his only mental illness and he was not an alcoholic or drug abuser. I am not saying it was right or wrong, but it was the right time for him and the right thing in his mind to do.

@rubyclaire that is heartbreaking. I am so sorry. Mom could not chew or swallow food her last two months so she was served soft foods. One day when DH and I were visiting (the day after Christmas, which is our anniversary), she told me it was time and that she had decided not to eat anymore. She told the nursing home staff too, but they kept bringing her tray, but did not force her to eat. She also had a Living Will and a DNR, which they had copies of. When I told them twice not to bring trays anymore, they said they had to provide, but after two days, they stopped. It was nine days before she passed away.

Oh thank you @Allison0704. Everyone here who has had to love and care for a family member through death has experienced this unique heartbreak. Your situation with your mom and dad sounds so terribly tragic but I can appeciate your dad's fierce independence to the end.

My grandmother had the sun downing early on. She reversed her days and nights and wandered during the night. While still at home, she could look out one window to see my parents home. She thought the landscape lights were people trying to get in their house. : (

Thankfully, I think because she was put on meds so quickly, her symptoms really didn't progress much. Right till the end, she knew my sister and I. She had wonderful caregivers, both at home and in AL. They kept her in her original AL villa (8 patients each villa) and never had to move her to a memory care villa.

Death by starvation is painful and drawn out. It would be more humane to euthanize a person than to stop feeding them. Unfortunately we don’t have assisted suicide in our state.

@Sherry8aNorthAL
We do know what we will do. We will not live a death life like that.

But how do you avoid it if that is your diagnosis. In Canada once an Alzheimer/Dementia diagnosis is given assisted death is off the table.

I hope I don't appear to be argumentative, I really am interested in alternatives having just watched my mom go through it. That list that you see on the internet about how to avoid dementia? Well, she checked off every box on that list and still suffered through it.

ETA - rubyclaire and Allison - thank you for your comments. I will look into this. One morning my mom simply refused to eat anymore and the facility didn't force it.

I am relieved that some states are beginning to allow assisted suicide. The 20th/21st century American way of death is contrary to the way death has always occurred. Most states now disallow discontinuing medicine individuals receive. Once one begins meds, one stays on them until death or until one no longer needs them or a newer or replacement med is begun.

In my mother’s state there were no two ways about it-meds and meals are required. As her body shut down, her appetite disappeared and she ate and drank very little. She was not forced to eat or drink, but they insisted she had to take her meds. I argued against it; her living will specified DNR. She remained alert and mobil until the day she died peacefully in her bed.

Sherry, I, too, am curious about how you know what you will do and how you will carry out those intentions. I hope you live in a state that will allow it.

I appreciate reading about all of these experiences. So many difficult decisions are made, and often in circumstances in which we'd never expected to find ourselves.

My family has a precedent that care moves down the family chain. Parents take care of children, who take care of their own children, etc. For whatever that's worth, I don't plan to rely on my kids in my elder years. I have too much pride to burden them like that. I want them to focus on themselves and their children.

Saying that, I also will not cause them to worry, and plan to be proactive in making sure my needs are anticipated as much as possible. No one will spend their days worrying that I'm in danger from my living situation. That's my plan, but, of course, we know about the best laid plans.

Regarding aging in place, I think it's a solid idea, up to a point. Numerous longevity studies point to the need for social interaction and community. Granted, the whole forced socializing in some AL facilities would be agonizing, but there is something to be said for feeling part of a community as you age.

A common theme in these discussions is falling. While we cannot avoid falling altogether, there are degrees to which we can prepare ourselves to be less at risk, and then be better prepared for recovery should a fall occur. This is part of my plan, too, and I incorporate balance exercises into my routine. My kids think I'm crazy at times, but they'll never look back in resentment that I didn't try to take the best care of myself as possible, in order to be less of a burden to them. I think there's a level of selflessness that's required to age with grace and dignity.

Sigh. More hugs for everyone who posted. There are no good answers.

Death by starvation is painful and drawn out. It would be more humane to euthanize a person than to stop feeding them.

Yes, on both parts. When I first posted here about my parents, I remember saying something along the lines of her ending "was not a Hallmark movie."

I am rersponding only from my personal experience and no technical knowledge on starvation - whether from voluntary refusal, artificial feeding tube or what I termed a "human feeding tube" at the time. We were told that if our mother opened her mouth and accepted food, she was likely getting some comfort from it. And we were comforted by that. At all times, we acted as our mother's advocate and loving children. We have no regrets - not even the approximate $1mil it cost to care for her during those years. When she finally did stop opening her mouth (reflex?), she died within about a week. A very peaceful passing which was a blessing.

I totally agree we must find better ways for people with terminal illnesses to die peacefully and with dignity. I know it has been mentioned before, but Being Mortal is an essential read. The issue of dementia and feeding is addressed in this article:

https://www.npr.org/sections/health-shots/2017/11/03/561393940/should-dementia-patients-be-able-to-decline-spoon-feeding

I feel like Roz Chast - can't we talk about something more pleasant? :)

My mom also started refusing food toward the end. She weighed 75 pounds when she died, but never seemed to be in distress for the last couple of months. She was so ready to go. I learned something from her right up to the end about orchestrating one’s demise. Whether consciously or not, she went on her own terms.

Yes to hugs all around.

Couldn’t not share this:

My husband and I have a pact to take ourselves out if there is an alzheimers diagnosis. We each watched a parent go through this horrific disease. There is a relatively new book, In Love, about a couple who took a lovely trip to Switzerland which ended with the husband ending his life in a facility there, where euthanasia or assisted suicide is legal. I have the book, but have not had the fortitude to read it yet. I did read Being Mortal and highly recommend. In our Living Will documents it expressly states that we do not wish to be spoon fed if we are unable to feed ourselves. We watched his mother linger far longer than she would have liked while being fed (never opening her eyes, interacting at all, bedridden).

Hopefully, before any of that is necessary we will move to a nice CCRC like the one my mother lived in happily for 12 years before her eventual decline and move to AL, followed shortly by her death at 95. Our situation is complicated by our adult son with Down syndrome who still lives with us...I know of one facility where he could join us and continue to be cared for after our passing.

Circle of life. I am sooo warmed by the memories of my grandmother coming to stay with us vs "assisted living". We were blessed to have plans for my in-laws to come to us when they needed some help. My children know to expect us when that time comes. I can't comprehend what you are planning, having no one, being unwelcome.

Oh look, it's our lil' ray of sunshine.

My children know to expect us when that time comes.

Okay, so, if you cannot walk and need a bedpan, for example, and they are juggling, let's say two working parents and three teenagers, maybe one troubled or maybe a shaky marriage and or financial issues, you are movin' in? This isn't the Waltons. People are living so much longer and their needs can be very different from any other family member. This isn't about love or duty. It is also about capacity, skill, and resources.

I can't comprehend what you are planning, having no one, being unwelcome.

At some point, especially as we age, any one of us might find ourselves "having no one." We should all prepare for it.

ETA: My grandmother lived with us when I was growing up, during my teen years. I gave up my room and shared with my sister. We all loved my grandmother very much and enjoyed her company. She was mobile and able to take care of herself, but she had become forgetful and running a house alone was too much, even with help. She was prone to somewhat random fainting spells, as was my Mom. The first few times we called 911, but after a while we learned just to let her rest and she was good as new. She died at 85, while visiting my uncle, her son. I think many families would be very open to, even appreciative of, having someone like my grandmother in their home. But many elderly are more problematic.

Alzheimer’s doesn’t progress or present in exactly the same way in all individuals. Some people live for years with mild impairment and enjoy the life they have. Obviously a diagnosis is not immediate peril, but people need to know and plan for each stage as it happens. Many people know nothing about any kind of dementia except what they’ve heard from others. A solid end of life plan based on symptoms and stages is a vital discussion to have with one’s children and/or significant other. I personally would refuse to help my spouse end his life soon after receiving a diagnosis unless the process in his case was very fast. He would be free to implement such a plan on his own, of course, but IMO people who commit suicide soon after a diagnosis may be robbing themselves snd their loved ones of good years because they are acting in fear and from depression. It’s complicated. As a practicing Christian I believe life is sacred and my role in ending that would not be undertaken lightly or prematurely.

adding… I must be the only person who read Being Mortal who did not think it was very helpful or interesting.

Yes, a diagnosis of Alzheimer's disease would be devastating but should not immediately trigger any end of life plan. However, as kswl points out, Alzheimer's (like many terminal diseases) is progressive. How long one stays in any one stage is variable and the presence of other underlying health conditions can be a factor. Living with mild cognitive impairment can be very meaningful and joyful. However...A solid end of life plan based on symptoms and stages is a vital discussion to have with one’s children and/or significant other. 100% - and best before any diagnosis if possible.

The thing about Being Mortal is, it did not really have any answers, as i recall. It was sort of a cautionary tale about the best laid plans. Still, I found it eye-opening and it made me think more about planning for that stage of life. Thankfully, I have a lot of time.

I think the take away for me from Being Mortal was how the medical community - in training and practice - can help adjust our focus from quantity of life to quality of life and what is important in dealing with aging and terminal illnesses.

Thankfully, I have a lot of time

By "that stage" you probably meant "old age." Most think "I have tomorrow," (my words) but sometimes tomorrow involves a debilitating car accident, stroke or heart attack. We just don't know.

Do we just talk about this here, amongst ourselves, or are we including family (or close friends) in conversation? It's a hard subject for many, and some people refuse to discuss, like it might jinx a life.

a debilitating car accident, stroke or heart attack

By their very nature, I don't think those are things one plans for per se, esp. in middle age with no health problems. The only real planning for such things is financial flexibility. But aging is a much larger issue.

Since my kids are still in college, not really a conversation they'd take very seriously. DH and I do talk about it. I am surprised to read that most people live in their own homes through until almost 80.

My children know to expect us when that time comes. I can't comprehend what you are planning, having no one, being unwelcome.

Even if you think you have someone who'll be there, you can't depend on that. No one knows which order we are going in and what could happen in the mean time. My oldest sister had two strokes at a young age - no one saw that coming. Her ability to help is gone, she is in need of help now.

Being incapable of comprehending what others grapple with is a dangerous thing. There is no "them" in these situations. There is only "us", and not a single person knows what the next moment holds, much less the more distant future.

This is a difficult and important discussion. I'm thankful to those who have shared their experiences.

"My children know to expect us when that time comes," -yikes, this makes me nervous. Many families have traditions of welcoming the prior generations into their homes, and it's just beautiful when it works.

But as others have pointed out, it is impossible to foresee every possibility. My mother lived with my sister for the last seven years of her life. She never had any health problems except high blood pressure. And then in the blink of an eye she got pneumonia, which developed into fluid on the heart, and she ended up with a 30-day hospital stay. The way her body deteriorated after thirty days in the hospital was a shock to us, but not to the doctors or nurses. More than one told us, "For every day in the hospital, it will take three days to recover her full mobility." We were still a bit naive and we took her back to my sister's house, planning to get her settled, expecting that eventually all would return to normal. I had flown up, and stayed a few weeks to pull all of this together, since my sister and her husband both work full time.

Within the first few days home, we had to call an ambulance when my mother fell while trying to walk from the bathroom across the hallway to her bedroom. (We had asked her to call us once she was done in the bathroom, but she felt okay, and it was literally a four-foot walk, so she felt she didn't need help.) The fall seems to have been caused by a syncope episode and she went back to the hospital for tests and treatments, and ended up with a pacemaker and another hospital stay. From there she was released, in a wheelchair, to a rehab. She was never able to regain enough strength in rehab to walk on her own. Nobody was more shocked than we were. Essentially, she walked into her doctor's office one day coughing, was diagnosed with pneumonia and admitted to the hospital, and never again walked on her own.

Since my sister worked full time, it was impossible for my mother to return to her house immoble, because there would not be anyone there to help. Yes, we could find people to come in for a few hours, but that wasn't the issue. My mother needed someone to assist her all day. And even if she could have navigated a roadtrip back to Texas with me, all of our bedrooms are upstairs, and so that wouldn't have worked. Fortunately, we found a lovely care home just a mile from my sister's house. My mother resented it, but our hands were truly tied. Just as Atul Gawande explains in Being Mortal, our focus suddenly became, 'how do we keep mom safe?" We just couldn't find another way of doing that.

I'm 64 now, and my two kiddoes are 27 and 31. Neither are married nor has children, so that is likely all a few years down the road. I plan to stay independent and do everything I can to assure a good life for myself. I eat well, am active, and work to keep my mind and attitude positive and sharp. I also have financial means that my mother didn't, which gives me options. But honestly, despite these well-laid plans, I too, could enter the hospital for a lengthy stay and suddenly find myself dependent on more exhaustive care than I would want.

Best years, my mother‘s experience was similar. She was fine until suddenly, she wasnt. She became unable to remain in her home while my husband and i were recovering from cancer surgeries, he with colon, me with kidney, dx’d seven weeks apart. Our children took over caring for Grandma in her home while also visiting us. When my Wonderful mom suddenly was unable to remain in her home it was impossible to have her move in with us as she couldn’t be left alone and we had too many appointments to keep.

She lived 70 minutes away from my home and I couldn’t drive for some time. There was no alternative to the nursing home. I couldn’t have provided the care she needed even if I had been healthy myself, and neither could any of the rest of us.

It was a perfectly horrible time in our lives, but 18 years later hub and I are still in our own home, happy, healthy, cognizant, no more cancer, and for me personally, hating to type on this forum! It’s ridiculous! We are coming up on 76 and 84.

"Aging in place" for my own family has meant "isolating in place."

Remaining in the large, inconveniently located homes they raised their children in was their choice. Our older adults are at home, alone, unless someone comes to visit--which is rare in suburbia. Their friends are dead or have moved. Moving closer isn't an option for the kids, either.

Introverts might be OK with this but it's very clear that the extroverts in the family would be much healthier if they got much more social contact.

My extroverted aunt who loved music, art, theater, and all kinds of socialization developed vascular dementia. She wanted to "age in place" so she was left at home with various caregivers looking in on her for an hour at a time over the course of the week. Most of them were not people she would have chosen to socialize with. When she was alone she was unable to do anything. Read? Not anymore. TV/Radio? Couldn't turn them on. It was awful.

Introverts might be OK with this but it's very clear that the extroverts in the family would be much healthier if they got much more social contact.

Social contact and feeling a purpose to ones existence are incredibly important for most people's health. Leave me alone too long and I will be talking to myself and practically suicidal. I need company and some purpose both intellectually and emotionally.

I agree with Zalco. Even though I am an introvert, I do need social contact to be at my best.

Another important point raised here is to have your wishes in writing in a legal document, make sure that your children or other trusted loved ones have copies of it, and also verbally express your wishes to them.

My Mom died first, with her mental facilities fully intact but she had a long slow horrid death due to smoking. She had even quit about the time she was 50, but the damage was done at that point and it got her in the end.

That left my Dad home alone. He wanted to stay in his home until the bitter end. Fine. We made some home modifications to make things easier for him as he aged.

Then the dementia started setting in, and things got very wild.

He was adamant he wasn't leaving his home. He only grudgingly accepted home health care. I work full time and lived an hour or so from him and could not/would not provide him with everything that he needed to stay home.

As was mentioned up-thread, home health care aides are as different as any other cross-section of humanity. You would also like to think they would always show up for their assigned shifts. Nope. We had people no-show, we had at least 2 aides steal from him and I became my dad's case manager. The calls were non-stop, the issues were relentless.

He had a minor stroke and while he was in the hospital I took the opportunity to force him to try assisted living, under the guise of a "rehab" stay. He swore he hated it. Yet when I'd go to visit him he seemed pretty content in some ways - but his mantra was, "When am I going home?!"

So we got home care lined up again and I took him home. He lasted less than 24 hours before he called me and asked to go back.

It turns out everything you all have shared upthread is true - that people do better having other people around them. He missed the activities, he missed talking to multiple people, and he was just generally much better off in assisted living. He spent the rest of his life there, voluntarily.

It was an eye opening experience for me in so many ways. My advice to anyone is to make your own plans while you can still make your own choices. If you wait too long, often times someone else will make them for you.

Don’t make the assumption that this is a late-in-life issue, because it isn't always. We can’t predict what we can’t control. But we can plan for what-ifs.

I know several who are making these decisions much earlier then the ages listed above. And I believe that controlling how we die should be a right. Fortunately we live in a state with that option.

I believe the decision should be personal, based on facts and beliefs and would hate for a loved one not to exercise their decision one way or the other based on what I want.

make your own plans while you can still make your own choices. If you wait too long, often times someone else will make them for you Oh, @Ally De truer words were never written. My in-laws are each one fall away from upending not only their lives but everyone else in the family as well. And it will not go well. They seem to believe they are going to continue living as they are up until the day they die with no (further) diminishment.

DH and I are still in Highland Park - we had planned to leave today but after spending a great deal of time with his parents over the weekend, me making many MANY references to things I am reading here and talking with the friends we are staying with, DH is going to give each of his parents a driving test today. I cannot WAIT to see how THAT goes or how hesgoing to approach it. Neither of them should be behind a wheel ever again and we did talk about it with them but they totally dismissed us. Many of the hospitals here do driving evaluations and if we have to call in a third party, we will. I want them off the road before they kill someone.

DLM, is this Highland Park IL or Highland Park in TX? Either way, there are there special requirements for older drivers at renewal, which may help you out:

In Illinois:

• Drivers age 75 and older are required to take a driving test to renew their driver's licenses; therefore they must visit a Driver Services Facility.

In Texas:

• In addition to the regular driver license renewal requirements, if you are 79 years of age or older you will be required to renew your driver license in-person at your local driver license office. During your renewal:
• You will be required to successfully pass a vision test, and
• A license and permit specialist will evaluate your responses provided at the time of your renewal regarding your medical history to determine if any additional testing is required*.

Yesterday a beloved and well-respected TV journalist and newscaster in our community passed away . She met her husband at the station where he is still a cameraman and they were parents to two daughters..She was a choir singer, extremely active in various charities and had a laugh that would have you laughing. She retired 10 years ago after a diagnosis of Alzheimers. As I mentioned she passed away yesterday - she was only 67 and died from the effects of dementia.

You never know what is going to strike you when and take all of your decision making powers away.

Driving - at one stage my kids refused to drive with my mom anymore. When I was with her and she drove through a stop sign in the grocery store parking lot I asked for her keys and she gave them to me. She said "really?" I said yes, and that was it. Fortunately at the time she lived in a very walkable area about 15 minutes away from me and if need be, she would either take the bus or I would drive her if she needed to go further afield.

Fortunately at the time she lived in a very walkable area

This is one reason why I tend to like urban locations for retirement, but then they are expensive.