Marlene Brubaker spends much of her time as a healthcare provider for the elderly, and has developed a passion for having seniors remain as connected with their children and grandchildren as possible. Thus she has come to question the wisdom of having people moving into retirement communities as a path to later nursing home care. Her own grandmother's bad experience in a nursing facility reinforced these feelings.
I know from first hand observation that many nursing homes do offer excellent care (I'll say more about that in a later post), but her advocacy for intergenerational end-of-life living arrangements deserves serious attention.
Here is her provocative essay:
We recently celebrated my father-in-law’s 83rd birthday at a little gathering in his backyard. He is a brilliant man, a former math professor turned psychiatrist. Some men in mid-life buy a sports car, but this man went to medical school. My mother-in-law also went through a metamorphosis, left teaching and went to law school. These octogenarians are still working part time and are still productive members of society.
My father is also a brilliant former math professor. He has since retired, and is doing things like guiding grandchildren in the art of lawn mowing. My mother is also a wonderful woman, her career having been raising three children and teaching us all the life skills we needed, along with some we didn’t think we needed (yes, I learned how to darn socks and operate a treadle sewing machine and wringer washer!). My children have wonderful memories of going swimming in the Yellow Breeches Creek with my mother. My sister’s four children are learning from her how to garden and organize their bedrooms.
Decades ago, all of these people could have decided to move into a 55-and-older community. By now our parents would have been there almost 30 years, away from their children, their grandchildren, and the neighborhoods where they raised their children. They would have sold the property in which they invested a lifetime of investment and upkeep and bought into a promise, a promise that as they age they will always be cared for. Most of the people they see daily would be of a similar age and social status, except for employees, of course. Then as they age, they’d move from their nice one bedroom apartment or small cottage into an assisted living situation, where when they step out their ‘front door’ they look into a hallway and all the other doors to all the other rooms where their peers reside.
Eventually, as their health deteriorates and they are moved into nursing care units, they would be wheeled down hallways to dinner, and wheeled into TV rooms to sit and stare at television, or someone will try to get them to do exercises while they sit on a sofa (if they got out of the wheelchair at all). They might just sit in the hallway on a wheelchair with an electronic pad that beeps each time they want to get out of it. In the dining hall, they’d be given about 5 minutes of assistance to eat their meal, and if their palsy doesn’t allow them to maneuver their fork, well, too bad. That’s what Ensure is for, right?
About 1.5 million people in the USA are now in nursing homes, according to US News and World Report. That means 1.5 million people are separated from those they love. This was my grandmother Grace Ebersole (Landis) Lamp’s end of life care. She didn’t have Alzheimers, but at age 102 they put her in a unit with screaming, crying and combative patients. She had cataracts, but no doctor would touch her 102-year-old eyes. When she dropped her denture-bridge down the commode no one would make her another one, so she had to gum her food. She could still walk, but she was tied to a chair. Finally, she just lay in bed and passed away in her sleep.
It didn’t have to be that way for Grace, and it doesn’t have to be that way for anyone reading this. As a home healthcare giver, elder care giver, hospice caregiver (my side jobs, I’m also a public school science teacher, and am working on my law license), I have seen a lot over my 31 years in this area. Many of these 1.5 million people could be at home with a little assistance from the medical community. But because of COVID19 those 1.5 million people remain stranded in nursing homes, unable to accept visitors.
The 55-and-over communities we have are a recent development. They are an attractive option because it they are convenient. Someone else mows your lawn, you are able to downsize, and you are able to socialize with people who like the same things you like and who think the way you do about so many things.
But what do you give up?
First, you give up opportunities to transfer knowledge to the next generation. You are a wellspring of knowledge. You had a successful career you may have had to leave when you moved into a retirement community. Now who can benefit from your knowledge? Not your peers in a retirement complex, they are as smart as you are. But children, grandchildren and neighborhood children can all benefit from your plethora of ‘how-to’ and ‘how it is, and how it should be’ and other things that need to be passed to the next generation.
Think of all those things you learned from the elderly in your neighborhood growing up. I learned about life before unions at Bethlehem Steel from Mr. Werkheiser, who walked to the cemetery every day at 5 p.m. to take down the flag. I learned to look for spiders before eating bananas Mr. Pearson gave me, and I learned about ‘What’s My Line’ from Mrs. Eisenhart. My own children developed a great relationship with Mrs. Franey and Mr. DiTizio on our block. Even your own children still need us. They need to hear the stories you didn’t tell them when they were kids, stories that were for adult ears only, or stories that were too sensitive to tell back then.
As a home-healthcare giver, I’m privy to so many of these amazing narratives. History rhymes, and you are the poet. You have recipes, methods, patterns, thoughts, beliefs, treasures lodged in your mind that need sharing. Not dumped on people at Christmas and Easter meals, but shared, piece by piece, crumb by crumb. There is no App that can teach your progeny what you hold dear in your heart.
Second, you give up the opportunity to transfer wealth to the next generation. You might think, I made all this money, why should my greedy heirs get a penny? Perhaps, but why should your retirement complex get a penny of it either? Our society is built on one generation paying the passage for another. Who paid the real estate taxes to pay for my (somewhat) public education? Who is now paying the Social Security tax for those retired? If we accept that we, as US citizens, are to help each other out financially, what is your responsibility to those in your own family or community?
You also give up the right to change your mind about any of this. You’ve signed on the dotted line. They have your money. There is no turning back without a significant reversal in fortune.
Third, we fail to experience the honor many cultures show their seniors. When I was in Bangladesh, I learned that the first thing you do when you enter an elderly person's home is kiss their feet. When is the last time you kissed anyone’s feet? Or had your’s kissed as a sign of respect? In such cultures, grandparents live with their children. In our own cultures, our more traditional Anabaptist (Amish and Old Order Mennonite) peers still keep their grandparents at home. Sometimes a little apartment is attached, a "dawdy haus." Expensive? Maybe. Worth it? Surely.
When I had to renovate my kitchen a few years ago due to some termite problems I asked myself, do I really need a kitchen AND a dining room? So, I purchased smaller kitchen appliances and placed them on one wall in the dining room, and converted the kitchen into an efficiency, just in case one of my elders needed to move in. In America, we tend to have the biggest houses for the smallest households. Other cultures thrive in multigenerational living spaces. Should we do the same?
Fourth, institutionalized living may be unhealthy. You are cared for by people who may only be making only a minimum wage, and who might not have health insurance or paid sick leave. Many aren’t given enough training, and aren’t given enough time to actually provide the care you need. I have worked in these places. People hire me as auxiliary, to augment the staff and help care for their loved one. There are no long one-on-one conversations, since staff are assigned numerous patients. They will hurry through, wash you, put on your diaper, and may leave you in bed by yourself half the day.
Federal and State governments have recently focused on encouraging home care. They realize housing people in nursing facilities may not be the best thing for many. Here in my community a lot of home health care businesses have emerged to train kin-care. This way you can get paid to stay at home to take care of your mother, father, siblings or disabled children. The Federal Register posts frequent proposed changes to programs that pay for home based medical care, including infusions.
If federal and state governments see a problem with 1.5 million people in nursing care, shouldn’t the family of God be concerned, too? Why are we encouraging so many of our seniors into retirement villages where they may feel secluded from society? Should there even be Mennonite retirement villages, or should more Mennonites be thinking about building their dawdy haus--or efficiency in a former kitchen?
At 55, I call on my generation to have conversations about these issues with our parents now, before they invest their life savings in an institution that promises to care for them in their last days. Maybe we should be the ones who make and keep that promise instead.
US News and World Report: Nursing Home Facts and Statistics
https://health.usnews.com/health-news/best-nursing-homes/articles/nursing-home-facts-and-statistics#:~:text=A%20lot%20of%20people.%20%22There%20are%20about%201.4,more%20activities%20of%20daily%20living%20%28ADL%29%20such%20as%3A
Federal Register: Medicare Payments for Home based healthcare
https://www.federalregister.gov/documents/2020/06/30/2020-13792/medicare-and-medicaid-programs-cy-2021-home-health-prospective-payment-system-rate-update-home
