At the End of Life: So Many Questions

November 1, 2015
by Alice Fisher, M.A., M.S.W

A couple of weeks ago, the front page story in the Sunday NY Times was about George Bell who was found dead in his apartment after the many days that he lay there alone. He was a hoarder and was found decomposing among his many possessions and in filth.

The horror of the situation is experienced from a distance for most of us. Surely that could never happen to anyone in MY family. And, yet, it did.

My 92 year old mother-in-law had been living independently in Florida, and for the past couple of years her advancing frailty became increasingly noticeable to us. The last time we visited we implored her to think about moving up to New York where most of her family is located. Met with her usual fierce resistance, we let it go one more time.

A couple of weeks ago we received a call from mom. She had fallen in her own home and lay on the floor for hours before anyone found her. Ironically, she was found by a messenger delivering a walker she had ordered. As a result of the fall, she had ripped the very thin layer of skin that covered her legs. There was a lot of blood, and in his wisdom the messenger called for an ambulance. When the hospital finished checking her out and bandaged her legs, they told her she could go home. She asked them to call her neighbor who picked her up and brought her home. Having had no response when this neighbor asked her to phone us in the past, this time her neighbor insisted that mom call us in her presence.

Mom had no advocate at the hospital, which I assume is the reason they took no tests and no notice of her deteriorating condition…not even a call to her doctor. There was no follow up and no instructions about how to care for her wounds, which I subsequently discovered had to be redressed daily. There were no arrangements made for a visiting nurse to attend to this, although it had to be obvious that this was not something she could do on her own.

I was soon to find out that this was just one of many times she had fallen in the past months. Each time her neighbor implored her to call her children, and each time mom promised she would. When she would see her neighbor, mom would assure her that she had phoned her sons. She never called us. And when we called her, she told us that everything was good. Between her children, grandchildren, and great grand children, she received calls almost daily. None of us suspected that anything was wrong. She never asked for help.

This day, however, her astute neighbor gave her no choice but to make that call. As mom began relating the story, still insisting that she was okay, we noticed instantly that her speech was slurred. On arrival at her home the next evening, the front door was unlocked, which was completely out of character, and I was instantly assaulted by the odor of urine and feces the moment I stepped into the entryway.

To my complete shock, I found a wasted away 85 pound person sitting in filth in a filthy house. She bore only a slight resemblance to the woman I’ve known for over 50 years. Under normal circumstances, she would have been mortified to be found in this condition. She was coherent but foggy, and she could not remember much of how she got this way. She just wanted to be left alone to sleep.

Of all the possible scenarios the family talked about before I left, this was not one we expected to find. I knew instantly that I had to get her back to New York with me. I told her that my mission was to take her home to her family. Her immediate response was, “No you’re not!” She could no longer walk unaided; and even with the walker it was most difficult. There was not enough strength in her arms to enable her to pull herself up to use the walker. She could no longer bathe or toilet herself. Wearing pull up diapers, the effort to get to the bathroom was too much for her, so she just sat in the same diaper all day.

How can this have happened? She could not have found herself in this condition overnight. Where were her neighbors? Where were her friends? (Her closest friend said to me, “I’ve suggested many times that she get a walker, and your mother-in-law’s response was ‘Don’t EVER say that word to me again!’”) Where was her doctor who she had seen only a week earlier? (He told her that her feet and hands were swollen because she probably had too much salt in her diet and to go home and rest with her feet up.) What about the hospital where she was taken after this last fall?* They took no tests and would not consider admitting her? The biggest question is “Why didn’t she ask for help?”

She was certainly complicit in her own demise, having ignored the advice of friends and neighbors, never asking her family for help, not eating, and accepting diagnoses from incompetent doctors and hospital staff without question. Was her denial so deep, or did she stop eating and not ask for help purposely? I don’t think we will ever know.

What if she never called us? What if the man delivering the walker hadn’t found her? She was so precipitously hanging on to life I have no doubt that if we hadn’t received the phone call and acted so quickly, she would have been found in the same condition as Mr. Bell…D.O.A.

One lesson from this tragic story is that a phone call is not a good enough way to check on an elderly person, particularly when that person is frail.

What about the bigger picture? Why didn’t she ask for help? Why didn’t her friends or neighbors contact us? We are a society that has moved so far toward valuing independence and individuality, we forget or don’t want to admit that nobody gets through life successfully without any help. Add to this the fear of being politically incorrect if we infringe on an individual’s privacy and independence by sending for help, even if it means protecting a life.

Whether help comes from mentors or teachers, from parents, friends, family, or neighbors, or from the government in the form of “entitlements”, everyone needs help at one time or another. And it is not only those who are ill, dying, or living in poverty who need help. Everyone needs help to survive in our society. We cannot all pull ourselves up by our own bootstraps. We seem to have collective amnesia when it comes to community caring.

The experience of bathing and diapering a frail elderly person, as I had to do for mom, sends a very clear message that a frail elderly person can require no less help than a newborn baby. We accept the premise that newborns need help coming into this world, while we often don’t acknowledge the help many of us need as we near our time to leave this world. I have to question the role of ageism in this distorted view of independence. Why don’t we have any system of national long term care?

Words in our lexicon that have taken on dubious meaning, include; interdependence, help, individuality, interference, old, frail, weak, and even tired. Asking for help needs to be considered a strength, not a weakness. Making it to one’s eighth or ninth decade needs to be considered an achievement, not a failure.

We need to confront age discrimination in all its forms; by the healthcare system, by our legislators, by the work force, by the media, by our own families, as well as the internalized ageism adopted by the elderly members of our society. All of these forms of ageism came into play for my mother-in-law.

Mom is now in New York with her family nearby. After a lengthy hospital stay, she is now in a long term care facility where she is receiving the 24/7 care she needs as she nears the end of her life. The family expects no miracles, we are just happy that she can leave the world with the dignity she deserves.

*Upon my arrival in Florida and with the help of extended family, I did take her back to the same hospital where she was taken when she fell a couple of days earlier. Interestingly, the medical staff now took all kinds of tests, showed us how to re-dress her wounded legs with instructions to perform this task daily. We did not have to ask for the tests or medical attention. They did what they should have done when she was brought in two days earlier. This time mom was not alone. We were there as her advocates and witnesses. I did ask them to admit her…pleaded is a more accurate description. The hospital refused. In New York, not only was she admitted to the hospital, she was found to have a major infection that was spreading throughout her body. It would seem that none of the medical personnel in Florida, not her doctor, nor the hospital staff, deemed this test necessary.

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