Vernon: Now this is the thought that wakes me up in the middle of the night. That when I get older, these kids are going to take care of me.
Janitor: Don’t bet on it.
The Breakfast Club
When I was a teen, my grandfather came to live with us during the summers. During the winters, he would live with his other son’s family in Florida where the winters weren’t so punishing. My mother was very negative about him living with us for several reasons: 1) he had opposed their marriage and made critical remarks about my mother’s appearance, 2) he was particularly critical of my parents’ decision to join the Mormon church, 3) she was the one who would have to do the bulk of care for him (cooking, cleaning, laundry, transportation, conversations, and there were some incontinence issues as well). Her negative attitude probably soured me on the arrangement more than it should have, given that I was a fairly independent 15 year old at the time. I wasn’t as friendly or engaging as I should have been when he tried to talk with me about his life experiences that adult me would certainly find very interesting. Being chatty with him felt like a betrayal to my mother, or at least like she would see it that way. Plus, I had other things on my mind, chiefly the fact that my suntan was just not happening no matter how much baby oil I applied. Eventually, his visits up north to our house ended, and he stayed all year round in Florida. After a few more years, he went into assisted living and ultimately died of a stroke in his 90s when I was in college. The nurses at the home called him “old blue eyed Bill” and seemed fond of him.
My mother’s parents died at home within two months of each other, both of strokes. My grandmother had been rubbing a sore spot on her arm, then lay down for a nap and never got up. My grandfather died of a stroke two months later, but that still gave him enough time to reach out to the mistress he had been forced to abandon decades earlier to tell her they could finally be together. She declined as she had moved on a long time ago. My mother found out about that from her sisters and was very angry with him at his funeral. Because her parents lived in their own home until their deaths, a nearby sister had taken some extra care of them, and in their will, she inherited at double the amount of her two sisters, something that didn’t foster sisterly affection. The two who received less felt that the other one had been manipulative.
Because of these experiences, both my parents had a strong aversion to living with their children in their old age, and both were wary of assisted living. My mother passed on last year, but my father continues to live in his own home at age 100, and in addition to a sister who lives in his neighborhood, we adult children take turns visiting to assist with his needs: making sure he takes his meds, cooking, laundry, cleaning, yard work, and keeping him company. When I go, I can’t help but think what will happen when I am old. Will I be cared for in this way? Will I have to go to assisted living? Will Social Security run out, leaving me in penury?
I was talking with my childhood best friend this weekend. She doesn’t have children, but takes care of her mentally challenged older sister who lives independently but requires a lot of support and check-ins. Her sister has been given a difficult diagnosis that will curttail her life and probably make the next few years a bit more onerous for my friend who has had her own health struggles over the years. My siblings who assist with my dad’s care also have their own health struggles, and it’s on our minds as we try to ensure caregiver coverage.
As we age, the arrangement that makes sense depends on our actual needs:
- What daily activities we can do for ourselves
- Our health needs and physical capabilities
- Our mental acuity
- The ability of a spouse to provide support
- The financial situation we are in
- Resources through government, charities, veteran services, or the church
Often the adult children of aging senior have to have serious discussions with each other to determine who will do what, and how physically and mentally capable the parent actually is. People have different opinions about when it’s time to take away car keys, for example, or whether and how to broach the subject of elder care.
Both my in-laws have also died, and in both cases they were able to die at home surrounded by family with hospice care visits occuring during their final week. In both cases, it wasn’t a question of whether they would die. It was determined it would occur fairly quickly based on medical diagnoses. While that wasn’t ideal in some ways, in other ways it was; they could choose how to end their final days, and family was able to be present, surrounding them with love and memories. I still think I’d rather die like my grandmother–taking a nap after rubbing my arm.
The church is one of my dad’s valued routines. He even attends singles activities once a month, which I don’t think indicates he’s looking to remedy his singlehood, LOL. But the church really is his only social activity at this point. Due to his hearing loss, he doesn’t enjoy group interactions very much as he needs to be able to lip read, along with using a transcription app on his iPad.
All of this makes me look at my own future and wonder how I would want things to play out. How do I feel about going into assisted living vs. having my own house? We just finished watching season one of The Burroughs, a star-studded series about retired people living in a desert community (by the same guys who did Stranger Things, so expect lots of weird stuff to happen). Sam, played by Alfred Molina, is grieving the loss of his wife, but also doesn’t want to be put out to pasture by moving into a retirement community; he avoids his daughter’s calls and is bitter about his new arrangement. Jack, another neighbor, adopts the role of welcome wagon, arranging a barbecue for Sam, and befriending him on a deeper level. Neighbor Art spends his days golfing and smoking pot. Everyone’s got their own way to feel relevant and to enjoy their remaining days. In many ways, this picture of a retirement community seems ideal to me, but it also might get boring. I love to travel, so that’s really what I’d rather be doing. I was once on a cruise, and a 93-year old widower was assigned to our dinner table. Maybe that’s a good way to spend one’s twilight years. As I contrast these examples, I think that meeting new people is easy, but making new friends is difficult.
Economic factors and health are the two biggest constraints we must all eventually deal with as we consider how to spend our final years. The bumper sticker I’ve often seen on RVs says “We’re spending our kids’ inheritance!” which is everyone’s right. I used to joke that my parents were going to clean the house, eat the last food in their kitchen, spend their last dime and then step quietly into their coffins. While that’s not exactly right, it’s not too far off either.
- Have you been through this type of planning process for your parents or grandparents?
- How have life experiences shaped your own feelings about the elder care you will inevitably need?
- What are your hopes for your own care in the future?
- Have you had disagreements with siblings on the care of elderly relatives?
- What role do you see the church playing in how you help your elders through this process?
Discuss.
My parents and in-laws are all in their late 70s and are still capable of doing most things for themselves. Thus far we’re mostly helping with changing the occasional hard-to-reach lightbulb or lifting something heavy. But we know that things will only get tricker going forward. My dad has commented so many times about people older than him that have no plans for end of life care or finances. Does he have a plan? No. Does he have a will? Of course not!
My wife’s grandmother needed a lot of help in her last year or two as she lived alone. She was insistent that she stay at home and that her daughters would help with things like bathing. She didn’t seem to grasp that her daughters were in their 60s and 70s, and probably shouldn’t be trying to physically move around old ladies! That family had 9 living kids that divided into two camps as to whether their mother should stay at home or be forced into a facility. Not surprisingly, most of the kids who lived out of state thought she should stay at home and most of the ones within a 20 minute drive thought she should move to a facility.
My mother was very observant when her own mother fell into decline, went into a nursing home and passed away. She is now 88 (yikes!) and still lives very independently with my dad; they even refuse to move down to the main level bedroom because “walking up and down the stairs everyday is great exercise!” Oh dear.
They have long-term care insurance, but that’s only useful if we’re talking about a transition to a care facility, which is not yet medically necessary. It would be ideal for her care insurance (or even Medicare?) to provide an hour or two of an in-home support person everyday: light housekeeping, maybe a shopping trip, pick up items and put them back in their places. Extending the months/years elderly people can live well in their own homes is FAR less expensive then shoving them into care facilities that they don’t need (not to mention maintaining their quality of life and dignity)- but there is often no charted middle-ground between full-independence and nursing home care.
The most useful thing that my mother shared with my sister and me was showing us where she keeps the key to her safe, the notebook where usernames/passwords are written down, her insurance policies, her banking information, the funeral home director, the house deed, a copy of the will and instructions for who gets what and the reasoning (so we can make good judgments on tricky issues). She even has her own obituary written and photo selected, I cannot make this stuff up. Is it all very morbid? Maybe. Is it so incredibly practical that I want to hug and kiss her? Absolutely. She knows that all of this will make a difficult process much simpler. This is her way of showing love.
We spent nearly 25 years providing end of life care for a series of family members in 3 different generations. We are now in our 70’s. As a result, I have lots of opinions about these issues.
Most of us are very unrealistic about aging. Unless we die young and suddenly, we are going to face hard times and difficult decisions. If I want to be in charge of those decisions, I have to make hard choices before I think those choices are necessary. My husband agrees theoretically, but he has a hard time actually working within that reality. I have told him that unless he starts cooperating, he won’t have a choice in my decisions.
In my experience, caring for aging family members caused huge challenges for our family. There are very real reasons why caregivers sometimes die before the person for whom they provide care. One of my siblings walked away from other family members due to her anger about what happened. Church members may provide some help, but rarely enough to really make a difference. The stress is overwhelming and nonstop.
I’m trying to do better.
I do an annual in-depth evaluation of our ability to live independently. I share it with my husband and our children. So far, we all agree that we are slowing down, but still managing our lives adequately.
We have done estate planning. We have a tote that contains our wills and other necessary documents. We have a list of accounts. We have a list of our passwords. We have signed documents with health care providers giving our children access to our health information. I have documents listing our heirlooms and their provenance.
I’m starting to clean up our house. I’m even getting rid of books, which for me is a sure sign that I’m serious about being prepared for these changes.
I honestly don’t know what our next step should be. What do we do when we’re no longer able to manage our house and our yard, but we don’t yet need assisted living? How will we manage when we are no longer able to drive safely? How will we recognize when that time has come?
I don’t have any idea what we can do to help all of us who are in denial about the realities of aging. Most of us will die by inches over a period of years. None of us will be happy with the loss of ability and independence. Those years will be incredibly difficult for us and for our children and their families.
We moved to a continuing care community run by the Mennonites, which has independent living, assisted living, memory care, and nursing home. We don’t intend for our daughter to have to take care of us if the need arises. I think that if you choose the right assisted living or memory care, you will actually be happier living there than with relatives.
My father has had a heart attack and a stroke within the last two years. This just might be a hint that he’s on borrowed time. My mother has pancreatic cancer. All four grandparents lasted well into their 90s but my parents may have 15 fewer years than their own parents. My siblings live very close to my parents and visit, cook, and clean every day. I live several hours away but do all their finances. It’s strange to have such an intimate view into their life – bills, investments, etc. We’ve agreed that it’s their money to spend how they want… but that any one expenditure over X dollars must be approved by me to help reduce risk of elder abuse or fraud.
As far as care of myself and my wife, my son in law is from a country where it’s normal to have parents live with children – expected even. It’s very generous of him but I want to be independent as long as possible. If I’m diagnosed with a terminal illness I would very seriously consider options such as provided Oregon state law.
As one commenter above stated, it will be very hard for me to accept loss of ability. I don’t plan to go “gentle into that good night.” I give myself a 50/50 chance of dying accidentally on the side of a mountain well before I grow old, which is semi-acceptable to me but makes my kids and wife angry when I say it.
A good post and a difficult subject. As several posters have commented, contemplating dying by inches and the gradual loss of independence is extremely difficult and discomfiting, which is why many people, I suppose, find it a difficult subject to discuss. Our plan is to retire to southern Utah, live in a one-level house, and have a care plan in place for different health situations (Azheimer’s vs. cancer, gradual loss of mobility and independence vs. a stroke that could take it all a way in an instant, etc.). I don’t fear death, but as an intellectual, I’m terrified of developing dementia, since I sacrificed a great deal of time and money, as well as many relationships in order to devote my 20s and 30s to becoming a scholar. If i lose my memory and capacity for reasoning, I’ll be losing the very thing for which I made all of those sacrifices.
I was not close to my parents, one of whom was an emotionally abusive alcoholic and the other of whom had a frightening temper and was physically abusive to my sister, so I would not have cared for either of them in their old age, even if they had asked me. My father developed dementia in his late 70s, and with medicine, was able to live relatively independently until about 83. He spent his last three years in several memory care facilities; all of this was managed by his ex-wife, who had power of attorney. My mother died of cancer, but was able to live relatively independently almost until the end of her life; she was able to stay in her home and have hospice workers visit. The one thing I gleaned from those experiences is that I would never want to burden my children with any care responsibilities, hence the various contingency plans.
One thing that’s only been tangentially mentioned is the expense involved in assisted-living and memory care facilities. The average memory care unit costs 8k per month right now. If I need to be admitted to one in, say, twenty years, I’m sure the cost will be at least double. Given the median retirement accounts of Americans, I doubt that very many would be able to pony up anywhere between 10 and 16 k per month should the need arise. And if you don’t own your own home outright and are therefore unable to sell it in order to use the money to get yourself into a quality care facility, the options are not great when it comes to being able to access excellent long-term care. And if one spouse is fine and the other is in an assisted living facility, that means that your retirement funding, whatever it consists of, will essentially have to pay for two people living separately, another significant expense.
My father had a series of micro-strokes that caused early-onset dementia and Alzheimer’s, as well as exacerbating his undiagnosed Parkinson’s. He spent a good deal of time in a VA memory-care lockdown ward until they were able to get some medications that helped him function somewhat. He went home for a while. I went to help out one week early into his in-home treatment. Part of his Alzheimer’s was Sundowners Syndrome; when the sun went down, he would get agitated and was unable to sleep. He was still physically strong and was stubborn. In his more lucid moments he had buried a couple of his pocket knives blade up so that he could “accidentally” fall and somehow end his life. He would also talk about walking down the block to where the highway ran through town and stepping out in front of a semi. Mom convinced him to show him where all his knives were and she confiscated them and started locking the doors with a key so Dad couldn’t get out at night. Then he started talking about burning the house down. That week I spent trying to help to corral Dad was possibly the worst of my life. I couldn’t reason with him, I couldn’t convince him. All I could try to do was contain him to let Mom get some rest. I still have trauma that I haven’t resolved from that week.
The worst part of Dad’s condition was that, even after he started responding better to medications and they had in home services to help out, Mom was so distracted by dealing with Dad’s problems that she neglected herself. She ended up needing emergency gall bladder removal, which went septic and wasn’t caught early enough. She passed away after finally getting all the paperwork through to get Dad into full-time VA care. Dad outlived her by two years.
Luckily, both Mom and Dad had prepared wills and set things up to be pretty easy to manage after their deaths. As siblings we generally agreed on what to do and dividing the belongings was relatively drama-free.
I guess we also learned from the example of Dad and his siblings. Dad and Grandpa put Grandma into a rest home so she could get the care she needed as Grandpa was mostly deaf and mostly blind. This upset the sister who lived closest geographically and she rarely spoke to Dad after that.
Elder care is a tough thing. All I know is that I don’t want to be a burden on anyone. I don’t really know how to make that happen, unfortunately.
My mother is 98 and while she is relatively able to care for herself (she can shower, dress, go to the bathroom, walk without assistance, etc.), she is losing her memory so she has been in this gray zone of needing help. While I don’t live nearby and therefore not one of the primary caregivers, I have some thoughts.
First, my mother always used to say she didn’t want to be a burden. Just shove her in assisted living and she’d be fine. As she aged, that went out the window. So be aware that even those who plan ahead may change their minds when it actually becomes a reality.
Second, she drove way too long. States need to come down harder and require seniors over a certain age, 75? 80? to pass a physical and written driving test every year. They should take away licenses if the driver cannot pass. It is too fraught for relatives to take away car keys. Once the license is gone, the relatives should step in. So work with your local governments and make this happen.
Third, get yourself used to non-relative help before you actually need it. Find yard and snow removal services and use them. Use a cleaning service. This can start out minimally and gradually become more frequent. Set up and teach people how to use Uber or Lyft or some other kind of transportation system. You could even set up a driving service with someone you know who is willing to do so for payment. All of this is to get yourself or others used to having people come into your home with services. Also so that you can find people you feel comfortable with. You may gradually need some home services, starting maybe with small tasks like making breakfast and making sure people take their medications, then preparing a lunch and dinner. Do not scrimp here. Pay well. Finding good, honest, trustworthy, kind, people is important! You are paying, hopefully less, than assisted living for those who deeply want to stay in their homes.
After that you can transition to people who do more intensive tasks as the need becomes greater, but at this point, if someone is losing memory, they are at least comfortable with different people in their home and doing tasks for them.
Most of the problem is that caregivers get burned out. Having a coterie of people takes so much of the burden off. A little bit of effort by a lot of people keeps everyone in a better place.
There are many other ideas out there. Plan ahead. I’m 62 and bought a place that is in walking distance of the grocery store, the bank, the post office, a drug store, my PCP, and a bunch of small restaurants. I can take the subway or bus into the city. I did actively think of what I would need and want in the future. I have a will and trust, and this week I hired a financial advisor. Get your ducks in a row. But, be flexible, because life rarely goes according to plan.
My dad outlived my mom and was independent until the last two months of his life (two years ago). During that short time period, there were some relationship fractures between my siblings that will hopefully heal over time.
My wife’s parents are getting older so I am trying not to give advice to wife and her siblings but I do anticipate some disagreements and probably a dose of reality when caregiving becomes more exigent.
I think I would like to kick the bucket in Europe or wherever one can legally be assisted to do so, without prolonging my life in some heroic fashion.
For me, the only value the Church has at end-of-life is providing a free venue for the funeral.
Chet
A number of US States, many out west, offer that option, including California.
I have no plans to ever go in a nursing home, I will be the cranky neighbor yelling.”Get off my lawn.” Unless you are rich, nursing homes do not impress me. In my limited circle, people who go into nursing homes, soon die. Why send them to a strange place to die.
But if they stay at home, how long will the caregivers survive.
Disagreements are inevitable. So I would recommend a game plan beforehand and expect disagreements afterwards.
As for hospice, I have had 2 experiences, and in both cases on my charitable days. I call them grossly incompetent.
But I did like the mystery show, “Man on the Inside” starring Ted Danson. I could live in that place. Too bad it’s a television studio stage..
My mother is the remaining member of that generation in my immediate family. Her family are relatively long lived. My father’s family are not. He died at 68, his parents at 68 and 72.
Since my parents married young, it sometimes feels like a toss up whether or not my mother might actually outlive some of us. The eldest of my brothers (younger than me) is in recovery and rehabilitation following a stroke. In any case, my mother is very proactive in forward planning.
suzanne neilsen: I also watched Man on the Inside, and that place must have cost $30K a month or something like that. Another one you might watch is The Burroughs. That’s another place that (aside from the underlying story that I won’t spoil) we would ALL love to live.
I’ve noticed as my parents aged that when they didn’t feel well, they want to die, they sign DNRs, and they languish. When they felt better, suddenly they wanted to live. I also think it’s important to have something to look forward to. When you are able, it can be travel, social events, etc., but when your life shrinks due to ability limitations, it can be a weekly trip to your favorite restaurant. But you have to have plans beyond today to want to go on.
This year four members of my ward moved into assisted living. Three of them moved to Utah for that. Those three had never before lived close to Utah. One of them is a widow from the deep South, where she became a latter-day saint when a young mother. She moved here to Maryland a dozen years ago to live with her daughter. The other two are a married couple originally from Central America who have lived in Maryland for many decades, have children living near, and are local legends of service. The widow’s new home is near a granddaughter, and the couple’s is near one of their daughters.
I was talking to a relative about these curious choices, and she has seen others do this too. She, who grew up in the San Francisco Bay Area and has spent most of her adult life in New England, believes there is a valuing of old people in Utah that translates to better assisted living options.
I strongly condemn the destruction of the Mormon Community that President Nelson began. It has left countless elderly members floundering in isolation. As Ms. Hawk pointed out above, elderly folks need something to look forward to. That used to include Ward activities with people that were all part of a community. Sadly, in the famous words of Amos Oz, that experience is now “elusive”.
John Mansfield
What is the current price point?
My brother eventually moved Dad into assisted living by him in Orem, It was half the price than here in California, and way nicer.
Will the church assist those suffering at wns of life with little means to care for themselves. Most of the planning advice only applies to those with substantial incomes. Many are struggling to just get by with little opportunity.
bookwormandapple made a really good point. Getting accustomed to hiring help is very important. I have friends whose parents need help and refuse to let anyone but their daughter help them. That puts a lot of strain on the daughter and on the relationship. Learn to let non-family clean your house, take care of your yard, and deliver your groceries.
I already pay someone to clean my house and deliver my groceries. I’m not going to become That Parent that insists a child take time away from their own life and family to spend multiple days running my errands and doing my housework.
I’ve got a son who will probably never live independently and, right now, I expect he’ll stay in my home with me. As long as I’ve got the mental faculties to pay the bills and tell him what to do, we’ll be fine. He wouldn’t be able to make decisions if I’m incapacitated. And he doesn’t drive. He’s good company and could get help for me if needed. I expect that I’ll be able to stay in my house as long as I want. I’ll hire home healthcare if needed – my longterm care insurance provides some payment for that.
And I’ve got a plan for suicide at an age I’ve already picked out. I spent so many decades suicidal that it doesn’t seem like a horrible way to go. I haven’t told my kids that.
I was with my mother when she died, and with my mother-in-law when she died. The first was in the memory care unit of a nearby assisted living facility. The second was at our home. Neither situation was ideal, especially not the first one. But there is a lot about being elderly that is not ideal. I’d spent my life thinking I would never, ever put a parent in a home. So much for that. Thankfully, if one must put a parent in a facility, the nursing homes of decades ago, that reeked of urine and had no social interactions, seem to be the exception now rather than the rule, at least in my area. Enjoy the time you have with them. Hold their hand even if they’re asleep. Sing to them even if you’re not sure they hear you. Forgive yourself for not being able to do more for them.
Thank you for writing this so honestly. The tension you describe, between respecting your parents’ independence and wanting to keep tabs on their health, is the exact place where so many families get stuck.
One thing that helps is naming the roles before a crisis arrives. Who researches options, who makes the final call, who gets notified if something changes, and what kind of check-in your parent actually finds comforting rather than intrusive. When those roles are unclear, the adult child ends up monitoring by default, the parent feels decided-for, and nobody is sure who should respond if something goes wrong.
Full disclosure: I run a company called Silvie. We build privacy-first home sensing using mmWave radar, no cameras, no microphones, no wearables, with the goal that an older adult stays in charge of what is shared and with whom. But even without any technology, your central question is the right one: how to support independence while staying connected.
Wishing your family clarity in these conversations.