Elder care in the long emergency: my personal experience

We all get old unless we die young. That's a given. But what do we do when we get older and less capable?

My elderly parents (dad is 86 or so and mom is 82) live in Delaware in a crumbling huge house. We've all moved away. My dad is good-natured. My mother is hyper-critical, one of the reasons we've all moved away.

My dad has numerous medical issues, the worst of which is the nonfunctioning bladder (life with a catheter) and Alzheimer's and type-2 diabetes.

My mother is showing signs of mental decline as well as plain old age.

On Valentine's day, she slipped on the icy front porch steps (we don't need a handrail because we can grab the bushes and they'll break our fall). She broke her left wrist in two places. They called the ambulance, leaving my dad home alone. He managed to call me -- a good thing because the hospital did not bother notifying any family member that we could tell. I drove to Delaware with Mark.

She had surgery. I left on Saturday after a week. Mark remained because he insisted. Each day gets harder for him, but he's hanging in there.

What do you do when relatives refuse to be helped because they're doing fine? They are obviously not. Relatives who refuse to have any help at all and won't have handrails installed in stairwells because we don't need them. Relatives who complain bitterly about having to do everything, yet refuse to cede control to anyone.

Having everyone anywhere from 25 to 1,000 miles away makes it ten times as hard. Relatives who shouldn't be driving under any circumstances because they're a danger to themselves and everyone else. It's easy to say 'take the car keys'. It's much harder to do.

One of the miracles of modern medicine has been to keep people alive much longer and in much poorer health than has ever been possible in the past.

What will we do? I have no idea what we're going to do. We are, however, agreed that my parents need a minimum of home health care on a near-daily basis. Assisted living would be better still, as I watch my elderly father stagger, lurch, totter, and stumble around a room. He needs a walker and my mother won't hear of it.

My mother is so difficult that none of us (me, my sister, my sister-in-law, and granddaughter-in-law) can have her in our houses so that's not an option.

In ye olden days, people didn't live as long and I suspect we'll be seeing more of that in the future.

ClareBroommaker's picture

Off hand I don't have any practical suggestions, but I did not want to just read and run. You have my sympathy. The situation sounds bad and entrenched.

Heck, I'm early 60's and thinking about putting a handrail at a single step down in my front yard. And I do already have a walker which both my husband and I have had reason to use, more than once. Me, during two back injuries and a foot injury. Him, during a foot injury. We've already been thinking about how we might squeeze a wheelchair ramp up to the house in the future, how we might safely bump up or down the front stairs on our behinds in an unexpected disability, how we might turn the living room into bedroom / sickroom, how we might find someone to hire for various help in the future, etc. Just seems to me that being cognizant now makes it a little easier to plan and enact. Even if we cannot get our elders to do what we think is reasonable, we can start building the frame of mind to do such things for ourselves in the future.

My own parents each lived with kids for some years until they died. Before that my mother had her mother live with her, and I know it was really hard for Mom. My father and his brother lived with their father to help him (and well, actually to have somewhere cheap to live). When my grandfather went to a nursing home, Dad and his two brothers split up the week so that one of them was with him at the nursing home every single day for about three years. As "regulars," they helped out in small ways with all kinds of things in the common areas, and were appreciated by the staff and residents.

My mother had the best idea. She thought younger adults ought to trade off parents with each other for in-home care. So Teresa, your Mom would come live with me, and my Mom would go live with Mary. Mary's Mom would go live with you.

Then all these Moms (or Dads or whoever) would be in a home where they do not have age old grievances they've nurtured nor feel entitlement to boss, bully, or even to "parent" inappropriately. More likely, they'd want to make a good impression, be on their best behavior. They'd have mental stimulation at seeing how another household eeks out their existence and enjoys life , and perhaps realize that, no you do not always have to put the forks into the drawer stacked precisely, and so on.

The young adults also would not have unshakeable preconceptions of how it would be to live with an unrelated elder, and would also be on their own better behavior, more likely be of adequate cheer and patience. Oh, no bed of roses, for sure, but maybe an easier task.

Like Clarebroommaker, I don't know if I could offer any practical suggestions, but it occurs to me that maybe your family could pay Mark to live with his grandparents as an informal aid. Maybe they would tolerate that, maybe not. If he just quietly pitches in with chores or what ever comes to hand maybe they would quietly come to accept that. Just a thought.

I haven't had elder care thrust upon me as so many have and each case I have observed is of course different. Failing mental faculties do seem to make things really difficult and much patients and careful coaxing on behalf of the caregiver seem to be required, taxing the caregivers supply of these qualities. I believe there are support groups for elder caregivers and perhaps they will have some practical ideas for you.

The best of all to you and your family in dealing with this problem.

Thank you for your thoughts.

I need them.

As for guardrails, grab-bars, lever door handles, D-handles for all your cabinets and drawers, handheld showers, and the like, install them now. I've spent years watching my parents negotiate an unfriendly house. Bill and I swapped out door handles and cabinet hardware years ago and it's easier for everyone.

The next phase is grab-bars and handrails at each of the doors that don't currently have them.

Better lighting is a must too, as is fixing things so they never have to be dealt with again: that's why we gutted all the closets, painted them top to bottom with ultra-high-gloss white enamel and installed Closet-Maid hardware. No one will ever have to repaint those closets.

Mark is managing, but it's hard. He originally said he's stay as long as necessary. Now he's talking about the end of March simply because grandma is so difficult to deal with. My dad is fading fast and desperately needs better pain management but again, barriers because "we're not popping pills".

This will end and pain will be gone. Suffering happens to all of us because that's the way life is.

Thanks again for listening and investigate universal access fixes TODAY.

We are currently remodeling a house and everywhere we can we are installing such devices. Now seems to be the time to do it since we are being made aware of the problems that come with aging by watching aging people around us.

Perhaps Mark might want to investigate caregiver support where he is just for a sanity check.

My mother is balking at the mere concept of strangers in her home. She doesn't like having us visit except she wants us to visit but then she doesn't want to have the extra hassle but by God, she's not going to let anyone help because they'll do it wrong.

Mark is gently encouraging the idea of help to navigate the deathtrap they live in. Seed might fall on fallow ground. It could happen. His latest decision is to remain until the cast comes off in April. Six weeks can be a long time.

As for home renovation, yes, absolutely, do it now.

If you've got bathroom walls open, make *ALL* your towel bars grab-bars. This is in addition to installing grab-bars by the toilet and in the bathtub. If you slip, you've got something to grab hold off.

Make all your doorways a minimum of 32 inches wide. 36 inches is better so you can easily get a wheelchair or walker through them. Hallways should be wider still, allowing for maneuverability.

There are loads of universal access resources available; online and books at the library. You'll see all kinds of things you never thought of.

Anything you can do now will make your house easier to manage as you get older.

Don't forget the landscaping! Ramps and slopes instead of steps in the garden and clearly defined beds. Good luck.

What’s your mental model or preferred mode of interaction with elders who are opposed to your wishes?
a) Gentle persuasion;
b) Autocratic and deaf to complaints, do what you decree necessary and callously tell opponents to lump it when they complain;
c) Seek family counselling or social worker aid;
d) Full-scale Italian family screaming and shouting arguments to make it costly for your family member to resist your will;
e) Magical work and/or prayer to help you find the right path for each different circumstance;
f) Family confrontation, a la substance abuse intervention (i.e., ganging up) and bearing down the self-deceptive defenses;
g) Humor, either good-natured or brutally satirical;
h) Calm, well-mannered disregard of the elder’s resistance, coupled with firm decisive installation of listening devices, home care services, or panic button services;
i) Treating the elders like ill-bred children, giving them a choice between this mode of action or another mode and telling them they have no choice but the ones you offer because you will not take ‘no action’ as a solution;
j) Respectful acquiescence to their evident folly out of a tradition of honoring elders no matter what;
k) Recruiting neighbors and paying professionals to call upon them routinely to give you plenty of warning about possible dangers;
l) Seeking police intervention to take away their drivers’ licenses and then hiring a person to check on them every day for shopping trips, household and yard work, or doctor’s visits;
m) Some other way of enforcing your will to provide them with necessary care;
n) Willingness to let nature take its course, and then do whatever becomes necessary when your mother’s will is not the ruling principle of the situation.

What result do you want to achieve? Your will being enforced or your mother’s?
What are you willing to do to see to it that you prevail?
How will it change your image of yourself?
What do you fear or resist from using any one of these strategies of enforcement? Estrangement? Sulking? Retaliation by your mother against your father as a proxy for her anger against you?
Are you hampered from acting by a mental model of refusing to be a carping critic like your mother?
Why not use that mode if it works? Role-playing the part of a carper or whiner or nagging nuisance can get you to the place where you win, even when you do not feel like being that sort of person.
Can you imagine yourself to be a powerful goddess like Athena who is obeyed and then use that soul-force to overbear your mother’s objections?
What is your personal relationship to power?
How do you like using power to achieve your ends in life?
What are the costs to you and your family of failing to enforce your will?
What are the costs to you of succeeding? Feelings of guilt? Loss of time and energy? Depression?
Distaste and self-disgust from feelings of anger? Sadness from constant apprehension and anxiety?
No one can guide you in your unique set of circumstances until you have wrestled with these issues and come up with an honest assessment of what means you are willing to employ to meet your own criteria of self-esteem, carry out your duties toward your family of origin, and establish your priorities of responsibility toward your family of choice.

Tough? Yeah, just a little bit. Pray for luck, lucidity, and love.

I read your list with increasing interest. In the past I found myself dealing with my spouses parents who were deep into mental and physical decline in the last few years of their life with increasing rage that I couldn't explain. I still can't.

These in-laws lived 20+ hours away from where I and their son lived and we didn't get to be involved more then once a year. While I didn't take my rage out on them in a physical fashion, I did employ a lot of hard bullying to try and bring a little sanity to their living situation. I forced my mother-in-law not to make coffee in her bedroom because the coffee maker and drawer where she stored the sugar had become a nest of ants. I found that unacceptable, pitched a loud fit while cleaning it up and moved everything back to the kitchen. She whined a bit, but accepted it. I wasn't going to take no for an answer.

Because of their very primitive water system which required them to be very parsimonious with water use, my father-in-law was saving dirty dish water in a barrel outside the front door so he could water the garden plants when it didn't rain (there is a dry season in the coastal area of Oregon where they lived). However, as you can imagine the thirty gallons of this saved water smell to high heaven and I couldn't imagine it being safe to have around. When I discovered it, in a real fit of rage, I kicked it over in the gravel drive to drain away. I couldn't believe they would allow such a thing to happen nor that any of the nearby family members would allow it to happen. It made me so mad.

I think my bullying tactics worked since the coffee maker stayed in the kitchen and the water barrel was not replaced, but so did the sister-in-law's patient coaxing and repetition of financial realities finally succeeded in getting a better water system installed. These weren't my parents, so that may have been why I got away with bullying them in the way I did where their children couldn't. Also I know the one sister-in-law has a fine idea of herself as a kind a patient person, but I think she is nothing of the kind and in the end was using quite a bit of personal pressure(bullying?) to get her parents to do the reasonable thing while letting them think it was their idea.

I have learned a lot about myself in reflecting on this episode, but I have never been able to quite figure out what triggered the rage. It is probably a number things I don't want to think about and I think your list will provide a useful means of additional reflection. I look forward to exploring it. Thanks

It might be difficult to pinpoint the source of the anger, but it seems to have had a good effect. Beware the wrath of the Good Housekeeper seems to be the archetype you invoked. Her worth is above rubies, yes?

By now, all I want is for my mother not to kill someone with the car when she resumes driving.
Which she will want to do.

She was always a scary driver and it's gotten worse over the years.
Regrettably, there is no public transportation in her area. Uber requires a cellphone (which she can just barely manage) and I don't know if she can even begin to navigate their system. I can't. No one's close enough to drive routinely for her.
She won't use any of the senior citizen services because those are for decrepit old people.

It's a challenge.

My elderly neighbor's son sabotaged his mothers car when it became obvious that she was unsafe to drive. He even came over to our house to ask Michael not to fix it if she asks. I don't know how they were able to get around after that. It could have been taxis or Uber or helpful church folk.

Just another thought.

ClareBroommaker's picture

Don't let internet based conveniences let your parents forget about taxis, both those registered with your local government, and informal ones that operate without sanction of the state.

My husband and son traveled (without a car) through rural areas and remote small towns and were always able to find a paid ride when needed. They would ask at the gas station convenience store or whatever small grocery was around. A call was made for them or a card was pointed to on a bulletin board. Locals often needed rides to and from these kinds of stores, so the drivers' services were well known.

Even here in the inner city, if one pays attention in the grocery stores, one can see who the informal taxi drivers are. Usually men in their 50s to 70s who hang out at the front of the store or an outdoor bench happily, alertly chatting, waiting for a customer.

Once your parents make a connection with a private driver, they can make arrangements for appointments, shopping, and so forth....Just a possibility.

I've never seen anything like this in Wyoming, De. That's not to say it doesn't exist.
The difficulty is not finding them. It's getting my mother to cede control to anyone.

Up until Covid-19, they were regular and long-term church goers but she wouldn't allow any of those people into their life or home.

It wasn't their business.

When my dad was in the hospital about three years ago (we discovered that his bladder was completely nonfunctional after the urologist drained out FIVE (5) LITERS of urine and yes, you read that right), I came down from Pa with Mark.

While we were at the hospital, two of their fellow parishioners stopped by.

My mother was upset because why were they doing this?
It was bizarre.

Sweet Tatorman's picture

Some problems just do not have satisfactory solutions. Whenever I encounter situations such as yours I am grateful that I was spared. My parents are long dead, 20+ years for father and 30+ for mother. Perhaps this was their last gift to me. Both were functional and independent to the end. I had the honor of cooking the last meal my father ever ate and he was dead 4 days later. No reflection on my cooking BTW. My terminally ill mother was still cooking for my Dad two weeks before she died. The last line of your original post brings to mind one of my favorite Jack London short stories, "The Law of Life".
https://shortstoryamerica.com/pdf_classics/londonj_law_of_life.pdf

Yes, this isn't a solvable problem. We can only manage; myself, my sister, my sister-in-law, and the grandson's wife.

There are plenty of reasons why my sister moved to Florida and my brother has remained estranged for years.

Yet my mother is not a bad person at all. She's unthinkingly rude and difficult, but never malicious.

My dad, despite the Alzheimer's is remaining sweet-tempered. I pray every day that he lays down for a nap and doesn't wake up. That sounds terrible but the alternative is far more likely: falling while walking across the room, shattering his hip, and spending the next few months dying by inches in a nursing home.

He needs a walker but that's still forbidden as then, according to my mother, he would lose hope.
A walker might not work anyway, not because he wouldn't use it but because the house is so disability-unfriendly.

It's a predicament and only time will solve it.