The good news is we are living longer. The bad news is it’s taking us longer to die. Soygul Rinpoche, the Tibetan monk and philosopher said that “Death is no big deal. You breathe in, you breathe out, and then you don’t breathe in anymore.” As a hospice volunteer for eight years, I would agree. But I’ve found the big deal is the journey towards death—aging. In the middle ages, most severe illnesses were followed quickly by death. Today, new medicines are allowing millions of older people to live longer. But longevity often comes with a price—the loss of dignity.

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Loss of Dignity

I visited a woman who was dying of lung cancer in a nursing home. What should have been the most spiritual time of her life became a nightmare. Not because staff weren’t compassionate—they were. Although she was occasionally delusional because the cancer had spread to her brain, moments of lucidity far outpaced the fantasies. When alert, she was treated as if she was either a child or someone who could no longer reason. She was neither. She confided in me that the worse thing was neither the pain nor the frightening delusions. It was the loss of dignity.

As a society, we often forget that people partially define themselves by how others treat them. Many people equate age with diminished capacity until they become “older” and treated as the village idiot because they forgot a name, lost the ability to be socially appropriate, or took a little longer to respond than a thirty-year-old.

Aging and Child-Like Behaviors

Any adult over 60 with children has experienced their offspring’s attempts to reverse roles. And as we age, the efforts become more pronounced and annoying. I remember a twenty-something computer store employee explaining to me how to run a simple software program as if I was a child who never got beyond crayons. It was irrelevant to her that I began using computers before she was born. The only thing she saw was my age. It wasn’t disrespect, but rather assuming that needing extra time to process verbal information was the same as reduced cognitive functioning.

As people age, many culturally dependent behaviors diminish and some eventually disappear. When superficial layers of  one’s ego drop off, what’s left is the core of a person’s being—not necessarily their charm or witty demeanor—but core characteristics of being human.

What many younger people misidentify as “childlike behaviors,” are really behaviors stripped away of superficially and are as honest as those of a child before she or he learned to “shade” the truth. Honesty should never be confused with diminished cognitive ability. We often focus on what is no longer there, rather than what’s left.

We’re living longer with new medicines and earlier detection of life-threatening illnesses. Those of us who are aging may still be cognitively intact, but need to do things a little differently. It may take us longer to process information, but that doesn’t mean our brains have become as porous as a sponge cake. And even when there are cognitive impairments, such as with Alzheimer’s and other dementias, the emotions felt before the ravages of the disease, are still there. They are just expressed differently.

Choices and Perceptions

Unfortunately, many people assume that with aging, relevant, meaningful choices can no longer be made. I’ve often heard, “I know what’s best for Mom (Dad).” Assumptions are made that the elderly can’t decide for themselves what is best for them—from what to eat for breakfast, to the decision to die.

There’s a widely-held belief among family caregivers that their worldview is identical to the person for whom they are caring. It rarely is. The perceptions of a healthy forty-year old who believes he’s invincible can’t be the same as a 70-year-old in poor health who realizes she doesn’t have long to live. For example, most people believe cleanliness is important. And therefore, an incapacitated loved one should be washed. But how do you balance your belief in the importance of hygiene with a parent who values modesty–especially when they are told they will be washed by a new healthcare worker of the opposite sex?

Often, how we make decisions is dependent upon our values, needs, and expectations. The same is true for the elderly. Maintaining their own sense of dignity, regardless how they define it, is just as important, or even more so, than being clean or well-fed.

22 Responses

  1. Jennifer

    Hi,
    I found a great resource that helped my Mom and I. Perhaps your readers could recommend to their children so they understand their parents needs better and the truth that seniors are not children. It really helped me help my mom since I think I aggravated her so much before I stopped and read this. Hope it helps others!

    http://elderlyparentresources.com/

    Reply
  2. Linda Moore

    Your insights are spot on, Stan. My father passed on 20years ago in a VA hospital. He was on the 7th floor, where you get to go at the very end. I could not convince the nurses that he had a bath the day before and since then did nothing to need another. They insisted he HAD to be bathed. I was getting no where so I decided to go for a cup of coffee. While they were bathing him he died. This was before cell phones so they sent a nurse to get me. Good thing he had that bath. What tthey ddidn’t know was that he was also a dirty old man so hopefully he departed with a smile! 😛

    Reply
  3. Roland

    Great article Stan. I completely agree with your position on the importance of dignity. I lived with my elderly grandmother for years and so I know firsthand how true this article is. She wanted to maintain her independence as much as possible. I could see that it was extremely important to her that she continued to do things on her own such as cook for herself, clean, etc. I, along with other family members would tell her to let us know if she wanted furniture moved and she never did. She would move couches and dressers all by herself. Being 76 years old with arthritis and high-blood pressure probably isn’t the best idea but she doesn’t care. Having her independence & dignity matters more to her. I am in the personal medical alert system industry and I speak with caregivers and seniors all the time. I will pass on this article to as many people as I can. Thanks Stan!

    Reply
    • Stan Goldberg

      Thanks for your kind words Roland. It would be great if everyone could have the same realizations you do. I think the key is experience, rather than just reading books and articles–even my own.

      Take Care,
      Stan

      Reply
  4. Ronee Henson

    As a nine year Hospice volunteer, I know from personal experience that those stories are all too true.
    Better Caregiver training would be most helpful. It’s just that most people who are working in these facilities are dealing with their own ‘fear of dying’ issues,and not properly trained AND supervised, and frequently exhausted.
    I have seen Family members, formerly respectful of the patient, do a complete turn-around in behaviour towards their loved one when this person has allegedly ‘lost’ it!

    I have pondered this problem for a long time. Would it help if your article was sent to every Hospice in the U.S.?
    I’m forwarding it to mine.
    Ronee

    Reply
    • Stan Goldberg

      Hi Ronee,

      Thanks for you kind words and feel free to distribute the article.It would be great if the article was sent to as many hospices as possible. Maybe it’s because I’ve been doing this for so long, but I believe that people who already believe as we do read my articles as confirmation of what they have been doing, while those who might benefit from them ignore their import.

      I would like to think that most or all hospices are in the former camp, but my experience with them as a volunteer and consultant is limited. I still will be writing on the issues I’ve focused on for the last 10 years, but I’ll be also using a different form–a novel. I’m reminded of the carnival barkers when I was growing up in eastern Pennsylvania who promised an amazing sight for only a quarter. When you got into the tent, you only saw a portion of what he promised, but for an additional quarter you got to see more. Eventually, I blew my whole weekly allowance.

      Maybe a compelling story with the themes I’ve been writing about may do the trick. Stay-tuned.

      Take Care,
      Stan

      Reply
  5. Mel Menzies

    This is so true, Stan. My father fell ill with pneumonia in November 2011. He was in a dementia home. Even so, he knew he wanted to die. But he was pumped full of antibiotics and recovered. Knowing his doctor personally, I was able to have a chat with him. He’d been away during the Nov episode and said he’d been surprised to see such ‘aggressive’ treatment. He spoke of the Golden Pathway, in which palliative care was given to ease any distress or discomfort, but no treatment as such. This was what my family asked for. And when my dad fell ill again a month later, we were able to be with him and see him eased gently into a peaceful situation. I sand Dear Lord and Father of Mankind to him (one of his favourite hymns) and prayed with him. He was nearly 98 when he left us.

    Reply
  6. Linda

    Hi Stan:
    Thanks for pointing out that we each need to be treated with dignity. That what people say is relavent and important. I’m in my mid 60’s and have come to realize life speeds up and the mind slows down. Keeping active is the key. Also sitting in meditation is important too. Each day is a gift. Fear creeps up now & then, but that’s part of life. Ive learned that it runs its course.
    I have worked in hospice also, and learned so much by talking with and listening to end of life patients. That’s a privilege!
    Thanks for your wonderful articles- something new to learn each time.

    Reply
  7. Patricia Puddle

    Hi Stan,

    It’s great that there are kind carers like you in this world. My father and father-in-law were both WWII veterans and heroes, and both died in the same hospital. My father died of a stroke and only lived a few hours, but my father-in-law died slowly and was first put in a nursing home. Here he was treated like a child and one day when my husband and I visited him at lunchtime, I couldn’t believe it when staff place the meals for the four patients in front of them and then left. None of them could reach the food to feed themselves and as we helped my father-in-law, the Matron came in and told the patients to eat up.

    What the?

    How on earth did she expect them to do that? The other patients didn’t have visitors. After the matron left, a lady came in and began collecting the full trays and putting them back on the trolley. I told her to put them back so I could help the patients to reach their food. I complained to her that nobody had bothered to help them to eat.

    Unbelievable.

    She gave me a strange look, but put the food trays back. My husband and I helped those deer folks to eat their meal. Some couldn’t speak and were drooling, but their smiles showed their gratitude. We certainly didn’t force feed them. As soon as their plates were held nearer and food chopped up, they all managed to eat on their own. That matron was a dragon lady and I bet the staff there had extra food every day. And yes, I did report that nursing home, but doubt anything was done.

    My husband made sure his dad didn’t stay in there any longer and had him transferred to the hospital, where he was treated much better. Though he did complain about losing his dignity when being force fed by a tube in his stomach in the last days of his life. He’d been in there for seven weeks and had Asbestosis from the engineering job he had on the ships. He was a very proud and intelligent man and it was so sad to watch him being talked to like a child. My mother-in-law also complained about losing her dignity when she was in hospital for the last time.

    Thanks for sharing your caring thoughts, Stan. Wish there were more like you.

    Reply
    • Stan Goldberg

      Hi Patricia,

      Wise observations. I also wonder how some people can do what they do without realizing the effect they have on patients.

      Take Care,
      Stan

      Reply
  8. Steve

    Stan,
    I was taken along with a number of nurses to see a facility’s newest dementia care wing. It had a chair into which patients were stripped, strapped, and then hosed down and dipped into a car-wash-like mechanism from which they emerged scrubbed quite clean. Then they were wrapped, placed in wheel chairs, and lined up along a corridor. “They are scrubbed clean as a shiny new penny,” the head of the unit said. I asked, “what then?” The head person replied that they had spent all the money on the new cleaning mechanism so there was none left for “social Programs” so far. Everyone left with the most depressed feelings — and even now, 35 years later — it is still fresh in my mind.

    So far, to my knowledge, money has yet to be allocated for any “social programs.” They did note that patients in the new unit did die sooner, it seems, but it would take research studies to ascertain why. Money has yet to be allocated for such studies.

    Reply
    • Stan Goldberg

      Hi Steve,

      I hoped at the end of your story you would say something like, “but this was only a dream.” Although I haven’t seen anything that bizarre, the psychological effects of some of the current practices have similar effects.

      Reply
      • Steve

        Unfortunately no dream at all, my friend. The story seemed sufficient unto its own — standing as a commentary on health care and where we are currently going.

  9. Barbara Ellis

    As I venture into my late sixties, I feel the sting of these truths. Fortunately I have been blessed with a kind, respectful daughter, who will sometimes gently remind me, “Mom, I mentioned that last week.” Although my mind and memory function quite well, I long for the days when the words from my mouth would flow unhaltingly like the best TV anchors–but with no scripts or prompters! What a great storyteller I was then. How I wish my daughter could have known me then. But my judgement, reasoning and knowledge are now at their best. A tradeoff, I guess. But the core of me is still here. I hope I continue to be blessed with kind and loving people around me.

    Reply
  10. Barry Willdorf

    Thanks Stan,
    This is an important issue. Many hospital workers have a problem with talking directly to older patients because they are frightened themselves. They don’t want to connect with a patient, especially one they fear may be terminal because death terrorizes them. It may seem strange given they are in the health care professions but it is a defense. That is why it is important that there be at least some people whose job it is to maintain the connections.

    Reply

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