Compassionate, informed advice about healthcare decision making

Archive for the ‘Dementia’ Category

A Pacemaker for a 93-Year-Old with Dementia — I Have Some Questions

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Credit: Boston Scientific

More than 200,000 pacemakers are implanted each year in the U.S. 70% go to patients over age 65, many of whom see improved quality of life and probably have their lives extended.

Recently, someone contacted me because she has a friend “who is struggling with the decision for her 93-year-old mother who has dementia regarding the insertion of a pacemaker.”

I am not a doctor and do not like to give medical advice, but I do have some questions for the family to ponder as they make this decision.

Questions:

  • Did the patient ever indicate her feelings about life-prolonging medical procedures in the condition she now finds herself?
  • How did the patient feel about her dementia?
  • Is she happy with the state she finds herself in?
  • What would you want if you were her?
  • What would the patient think about living longer, knowing she will lose more of her mind and become more and more feeble?
  • Has the family considered enrolling the patient in hospice and focusing on the comfort of the patient?
  • Would the patient rather die than continue to decline into more memory loss?

Care of dementia patients at the end of life is personal for me

Hank and his mother at her memory care facility

I blogged previously about my parents’ deaths in “How Did Your Mom Feel About Her Dementia?” and “A Tale of Two Docs.”

Both of my parents died with dementia. We were always looking for procedures we could NOT do to allow a peaceful and sooner death. For example, we decided if either came down with pneumonia, we would not seek a cure but would keep them comfortable. My brother, sister, and I felt we handled their ends how THEY would have wanted.

Hank with his nursing home resident father

After a year and a half in a memory care unit, my mother fell and fractured her pelvis. This is a known death sentence for a dementia patient. We didn’t even have her sent to the emergency room. The hospice doc ordered pain medication, and I flew from Virginia to Colorado to be with her.

After more than four years in a nursing home, declining from Parkinson’s and strokes, my father could no longer be hand-fed. There was NO discussion about a feeding tube. I flew to Tampa to be with him, where he died six days after his last intake of food or water.

Sometimes, questions are better than answers.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together, they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

Dementia? I’d Rather Not

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I often think about spending my last years of life in memory loss.

Hank’s extended family of origin, 1960. All but one of the adults in this photo died with dementia

One photo says it all. 1960. I am twelve. My mother’s family of origin gathered with our various aunts, uncles, and cousins surrounding my grandmother. Seven adults and seven children. Six of the seven adults died with dementia. Aunt Martha was the only one spared, and she was not a blood relative of mine.

My mother, who probably had Alzheimer’s, died at age 92. Dad got a double-whammy of Parkinson’s and multi-infarct dementia (a series of small strokes). He was 85 at death. Both spent their final years in a nursing home or a memory care unit.

What I can control

Hank with his mother at her memory care unit.

There are no cures for the various forms of dementia that could befall me. Yet, there are actions I can take to reduce the risk or delay the onset of cognitive impairment.

I have written before about reducing the risk of dementia and how my hearing loss is a risk factor that could lead to cognitive decline.

Recently, I read an article in JAMA titled “Lifestyle Enrichment in Later Life and Its Association With Dementia Risk.” Here is part of the summary of the research:

“[M]ore frequent engagement in adult literacy activities (e.g., writing letters or journaling, using a computer, and taking education classes) and in active mental activities (e.g., playing games, cards, or chess and doing crosswords or puzzles) was associated with an 11.0%… and a 9.0%… lower risk of dementia, respectively.”

Author event with Ann Patchett at Square Books, Oxford, Miss.

Keeping my mind active

I read articles like this recent one and wonder, “Am I reducing my risk?” I like to say, “Yes, I am.”

Looking back at my previous blogs about reducing the risk of memory loss, I can check several boxes. I work at vigorous physical activity and try to get enough sleep. Several times a week, I journal and often am on my computer (maybe too often?). Almost weekly, I attend an author event at Square Books or a lecture at the university’s Overby Center for Southern Journalism and Politics or at the Center for the Study of Southern Culture.

All the advice includes staying engaged socially to keep the mind active. Besides church activities, I attend two weekly men’s groups. One is here in Oxford, where we sit around and mostly talk about politics. The other is on Zoom with the group I have been in since 1992.

I like to think I would be doing all this active-mind stuff even if there were no evidence of health benefits. I just enjoy all the activities I mentioned above.

Even my father’s active mind suffered cognitive decline

Hank with his nursing home resident father

All the advice is about REDUCING the risk of dementia, not PREVENTING it. A good case in point is my father. He was a lifelong reader and writer. He authored almost a score of books. Even while in the nursing home, he tried to write a weekly column for publication.

Mom told me that as it became more difficult for Dad to compose a few paragraphs, she suggested they stop making the effort. Dad responded like a typical child of the Depression, “We need the money.” They didn’t need the money, and he eventually gave up on writing.

Even though Dad kept an active mind, he did not “check all the boxes.” He never participated in vigorous physical activity and was a heavy smoker for probably thirty years.

There are enough examples of public figures who ended their days with cognitive impairment, like Ronald Reagan and Pat Summitt. The mental exertion necessary to be President for eight years or to win eight national basketball championships did not prevent memory loss in the end.

My preparing for the worst

Knowing that memory loss could likely be in my future, I have made a few preparations. Like my parents, I have purchased long-term care insurance. They both used every bit of the four years of benefit that paid for their institutional care.

I also recently added an addendum to my living will, instructing my family to withhold hand-feeding if I reach stage 6 or 7 on the Functional Assessment Staging Tool. I have used the addendum put out by End of Life Choices, New York, which is in line with my right to refuse medical treatment. I discussed this Voluntary Stopping Eating and Drinking (VSED) in a previous blog.

Whew! That’s a lot. I think I’ll take a nap — also one of the boxes to check.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together, they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

Lessons from Jimmy Carter’s Six Months in Hospice

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Former President Jimmy Carter continues to teach us how to age with grace and meaning. I blogged previously about his going on hospice back in February. Now, six months later, he is still alive and receiving hospice care at home.

Three lessons we can take away from this phase in his life:

  1. Hospice care can continue longer than six months

To qualify for hospice under the Medicare benefit, a physician has to say, “This patient has, at most, six months to live if the disease runs its normal course.” What happens if the prognosis is wrong and the patient is still alive after six months?

Note the caveat, “if the disease runs its normal course.” Some patients do live longer than is expected. In these cases, the hospice can re-certify that the patient still appears to have six months or less to live.

Some diagnoses are very difficult to guestimate the number of months a patient may have left. For instance, cancers are easier to give a prognosis than dementias. Doctors just do the best they can.

50% of hospice patients are on hospice care for 18 days or less.* 25% receive care for just five days or less. But there are outliers on the long end, with 10% on service for more than nine months. So, Jimmy Carter’s six months does happen more often than you might think.

  1. Hospice care is primarily delivered in the place of residence

Carter home in Plains, Georgia. Photo: Library of Congress

Many people think hospice is a place you go to die. Not true. Hospice is a concept of care. 98% of hospice care is delivered in the patient’s residence, whether that is a private home, an assisted living facility, or a nursing home.

A recent Washington Post article gave a window into life in the Carter home now.

“Jimmy Carter is often out of bed first, waiting in his recliner for his wife to emerge. ‘Rosalynn comes in the room and makes a beeline for this chair and bends over and kisses him,’ said Jill Stuckey, a close friend. They spend many hours sitting side by side.”

  1. Families usually provide most of the caregiving for hospice patients

Place: Nasarawa North, Nigeria; Feb. 15, 2007; Credit: The Carter Center

Many families are surprised that hospice does NOT routinely provide round-the-clock care. The family must provide the bulk of the care. Only 1% of hospice dollars go to what is known as “continuous care,” meaning round-the-clock.

Of course, the Carters have the resources to get the best care at home. They have other perks too. The Secret Service gave the couple a ride to watch the Fourth of July fireworks in their hometown.

Interestingly, Rosalyn Carter has had a passion for providing support for family caregivers. When The Carter Center announced that Mrs. Carter was diagnosed with dementia, they commented, “As the founder of the Rosalynn Carter Institute for Caregivers, Mrs. Carter often noted that there are only four kinds of people in this world: those who have been caregivers; those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Thank you for your service

The Post asked people who knew them what makes the Carters keep going. “Gerald Rafshoon, who was Carter’s White House spokesman, and others believe a key reason the Carters keep going is that neither wants to leave the other.”

The Carters have lived a life of service and continue to provide an example of how to approach the last days. Thank you, Jimmy and Rosalyn!

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*Statistics in this blog came from the National Hospice and Palliative Care Organization’s “Facts and Figures, 2022 Edition.”

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

New, New Year’s Bucket List

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I’ve never been one for a “bucket list.” You know — the one with skydiving and climbing Mt. Kilimanjaro on it. Never thought of those things.

But, I do think of “things to do”. They come to mind, and I say to myself, “I really need to do this before I get so disabled or demented that I can’t finish them.”

For what it’s worth, here are some of mine.

  • Update our wills. It has been years since we last did this. We’ve moved to a new state—TWICE—Florida and now Mississippi. We’ve launched our daughter out from under our roof (never out of our hearts). There have been many other changes in our situation that make this update necessary.
  • Update our advance directives. I wrote a blog recently about Voluntary Stopping Eating and Drinking (VSED) by advance directive. I want to add instructions on when to stop hand feeding me if I have advanced dementia. Putting this in writing can be very easy to do with samples I linked in the blog. Then, of course, we need to have two friends over to witness my signature.
  • Review beneficiaries on retirement accounts. This one we have done recently but I’ll check again just to make sure they say what I want them to say.
  • Continue to gather my “memoir” for my kids and grands. I wrote a blog around my birthday in 2021 about “keeping your regret list short.” It was kind of a “bucket list” thingy and I mentioned the notebooks I had gathered for my children and their children. Well, I have written more since then, so I need to keep on gathering. I also print my favorite quotable-quotes file (36 pages long). Interestingly, I found among dad’s papers, a notebook he kept of his favorite quotes, probably dating from the 1950s. When I started my own compilation of quotes, I had no idea he had done the same.
  • Finish my “spiritual autobiography.” I am in a small group at church, and we all are writing a spiritual autobiography to share with the group. I have a draft and will continue of refine it. I want to get it in a form suitable to give a copy to each child and grandchild. My spiritual life is so central to who I am, and I want to let those who love me know what is bubbling up inside. I don’t think they have any idea.

These are all doable items — and so important to me.

What about you? What’s bubbling inside on your important “things-to-do” list.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

VSED by Advance Directive — An Alternative to Prolonged Dying

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Margot Bentley

Margot Bentley did not want to spend her last days in the way she spent her last days. Hers was a fate almost all of us wish to avoid. She told her family her wishes, and she put them in writing. Yet, Voluntary Stopping Eating and Drinking by Advance Directive (VSED by AD) did not work for her.

In my last blog, “She Fasted to Hasten Death — VSED,” I introduced the idea of VSED. It is a legal and morally acceptable way to hasten death when faced with a terminal or chronic illness one finds unbearable. This option is only open to people with the presence of mind to notice that they are in a state they would consider intolerable.

As a nurse, Margot Bentley cared for many patients in the advanced stages of dementia. She let her family know, and put it in writing, that if she ever progressed to severe dementia, she would like hand feeding withheld to allow her to die a natural death. When that time came, her family asked the care facility to honor their mother’s wishes and stop the hand feeding.

The facility refused, saying that Mrs. Bentley indicated she had changed her mind because she opened her mouth and received food offered to her.

Advanced-stage dementia patients may:

  • Require around-the-clock assistance with daily personal care.
  • Lose awareness of recent experiences as well as of their surroundings.
  • Experience changes in physical abilities, including walking, sitting, and — eventually —  swallowing.
  • Have difficulty communicating.
  • Become vulnerable to infections, especially pneumonia.

Source: “Stages of Alzheimer’s,” Alzheimer’s Association website

Everyone I know would like to avoid ending their days lying in a nursing home bed, unable to recognize family, dependent on others to wipe their bottoms, and help with all activities of daily living. People can live for years in this final stage of dementia. I have told my family to stop hand feeding when my time comes.

Margot Bentley’s family had to navigate the court system in British Columbia to try and comply with their mother’s expressed desire. The courts denied their request.

VSED by AD: A new frontier of end-of-life care

I have been chaplain for several patients who were allowed to die a natural death after the cessation of hand feeding. The families were convinced that their person would not want to be sustained by even hand feeding. Their deaths were peaceful within days of the withdrawal of food and water.

From: End of Life Choices NY advance directive

All these patients were in the most advanced stages of dementia. Even hand fed, these patients would probably not have lived more than a few months. I would have felt better had the patient left written directions, such as a living will or other advance directive. But these families felt certain they were requesting what the patient would have wanted if they could have spoken.

Here are links to three websites that provide information on VSED by AD; each includes a sample form:

End of Life Choices, New York

Final Exit Network

The Dartmouth Dementia Directive

I personally would like to avoid a prolonged dying from dementia. I want to spare my family the expense and emotional toll of watching me die by inches. I know it will be hard to invoke my advance directive, yet, they will have confidence that this is the way I want to go.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

I’m On a Podcast This Week

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I am interviewed by Dr. Saul Ebema on the “Hospice Chaplaincy Show” this week. He has a great podcast for hospice chaplains that I listen to regularly. Click here for access to the show.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

Being Sued for SAVING the Life of a Patient

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“I’ll drag mother down to my car and take her to the emergency room myself,” she told me.

The patient had left verbal and written instructions that she did not want to have life-saving treatments when she was dying. A “No CPR” order was on her chart. Knowing her daughter’s feelings, the old lady chose her son as her power of attorney. She conspicuously omitted any mention of her daughter in the document.

I met this patient, her son, and daughter while I was a nursing home chaplain. By that time, the patient had severe dementia, so healthcare decisions were in the hands of the son. The daughter commented about taking her mom to the emergency room in one of our earlier conversations.

A recent issue of Hospice News featured a story about how healthcare institutions are open to lawsuits if they do not honor a patient’s wishes to refuse life-sustaining treatment. We almost always think it is the right thing to save a life. But there are cases of “wrongful life.” That is, saving a patient’s life who had chosen to let a natural death happen.

As it typically happens, the nursing home patient I ministered to went into a slow downward decline. Even the daughter eventually realized that when her mother’s heart finally stopped, it was time. Thankfully, there was no schlepping the poor old lady into the car.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

It’s Your Choice: You Can Change Your Views of Aging and Improve Your Life

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I seldom picture myself becoming a demented, incontinent, and disabled patient in a nursing home. My future may indeed look like that because both of my parents ended up in such a state. On top of that, I cared for hundreds of such patients as a chaplain. Many of them were my current age (74) or younger. Why not me?

I did prepare for such a future, having bought long-term care insurance twenty years ago. Again, my parents’ aging convinced me to get the policy. They both used every dollar from their nursing home insurance benefits.

Choosing more positive aging

An article I read recently prompted these thoughts. It was titled, “It’s Your Choice: You Can Change Your Views of Aging and Improve Your Life.” Here is how it starts:

Becca Levy, a professor at Yale University, studies the way our beliefs about aging affect physical and mental health.(JULIA GERACE)

“People’s beliefs about aging have a profound impact on their health, influencing everything from their memory and sensory perceptions to how well they walk, how fully they recover from disabling illness, and how long they live.

“When aging is seen as a negative experience (characterized by terms such as decrepit, incompetent, dependent, and senile), individuals tend to experience more stress in later life and engage less often in healthy behaviors such as exercise. When views are positive (signaled by words such as wise, alert, accomplished, and creative), people are more likely to be active and resilient and to have a stronger will to live.”

Being blind is “wonderful”

I remember asking an 80-something-old patient at the nursing home what it was like being blind. She said, “Wonderful. You learn so much being blind. I can tell who is coming into my room by the sound of their footsteps. I listen to talking books. It is just one learning experience after another.” That lady would be one of those resilient folks mentioned in the article.

Judith Graham of Kaiser Health News interviewed Yale professor Dr. Becca Levy about her newly-released book, Breaking the Age Code: How Your Beliefs About Aging Determine How Long and Well You Live. The bottom line is that if we have a more positive and hopeful view of aging when we are younger, we will more successfully move through those years to the end.

In the interview, Dr. Levy gives several suggestions on assessing our attitudes and how to develop more positive ones. Maybe someday I, too, can say being blind is “wonderful.”

 

 

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

She Moved Her Hand to my Thigh — THAT was far enough

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Music engaged dementia patients

She put her hand on my knee. I fed her a few more bites of lunch. Then, she moved her hand to my thigh. I placed it in her lap and said, “Eleonor, let’s keep our hands to ourselves.” She looked at me and said, “I didn’t mean anything by that.”

It was just another day in the memory care unit of the nursing home where I was chaplain for twelve years. I had found a way to minister to those who have dementia. Bible studies did not work because these poor souls could not track such a discussion. I could also bring my guitar and sing gospel songs with them.

Hand-feeding became a ministry tool. My mind went back 30 years to my lunchtimes at the nursing home as I listened to a recent GeriPal podcast titled, Understanding the Variability in Care of Nursing Home Residents with Advanced Dementia.

Avoiding Tube Feeding and Hospitalizations for Advanced Dementia Patients

Artificial feeding tube

In their typical entertaining style, the hosts and guests on the podcast discussed the latest research on caring for advanced dementia patients in nursing homes. The researchers wanted to find out the difference between nursing homes that had poor outcomes in the care of the patients and those that did not. The specific outcomes they were looking for were feeding tube use and multiple hospitalizations for advanced dementia patients.

I have written previous blogs about the harmful effects of feeding tube use in advanced dementia patients hereand here. A decline in eating and weight loss is expected in advanced dementia patients. Putting in a feeding tube does not make them live longer and makes their lives so much more miserable.

Likewise, multiple trips to the hospital are a tremendous burden on these patients and do not extend their lives. I previously wrote about my friend whose family refused hospitalization as his dementia advanced. I quoted his wife as the title of my blog, “We didn’t want to put him through that again.”

Good and Bad Outcomes in Nursing Homes

The question for these researchers was, “What are the characteristics of nursing homes that have low feeding tube use and fewer hospital transfers of advanced dementia patients?” They found four differences in the cultures of the facilities with good outcomes as opposed to poor outcomes:

Careful hand feeding

  1. We found their physical environment was drastically different; where those with low feeding tube rates had really a rather beautiful physical environment. The other nursing home had wallpaper peeling off the walls and a strong smell of urine.… Every day, they had a different cooking contest so that there was food throughout the facility, and all day long.”
    2. “We also saw the decision-making processes were different. Whereas the home with the low rate of feeding tube use involved families in decision making. We didn’t see that in the high rate nursing home.”
    3. “We also saw care processes were different. You think the number of staff available to feed people; feeding for people with advanced dementia is very time consuming and takes a lot of hands and a lot of time.”
    4. “Then finally, we saw that their implicit values were different. We saw that the nursing home with a low rate of feeding tube use really valued comfort and valued keeping people in the facility.… Whereas the nursing home with the high rate of feeding tube use were more concerned with regulations, making sure that they didn’t get any dings on their surveys, and were really concerned about maintaining people’s weight.”

 

In my years at the nursing home, I would often go to the memory care unit at lunch and tell the nurses I would like to help feed patients. I clarified, “I don’t want any spitters or chokers.” It became a ministry for me. It turns out, thinking of this podcast, I was helping reduce the use of feeding tubes.

Eleonor was the only flirt I encountered in my years feeding patients. She and all the others deserved just a little time for hand feeding. I was glad to be part of such a caring culture.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

 

Ending Cancer Screenings at MY Age

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I have entered a medical-screening twilight zone. When I was in my 60s, I always got colon and prostate cancer screenings. Now, at 74, I am thinking about stopping the screenings.

Photo by Hush Naidoo Jade Photography on Unsplash

JAMA Internal Medicine recently published a research letter — “Comparison of US Cancer Center Recommendations for Prostate Cancer Screening With Evidence-Based Guidelines.” The guidelines recommend that all men 50–70 years old have an annual screening, regardless of their risk factors for prostate cancer. They suggest the patient and clinician share the decision to do this screening.

The clinician should also inform the patient of both the risks and benefits of the screening. There are downsides to prostate cancer screenings at any age — false positives, misdiagnoses, and overtreatment. Treatment can cause urinary, bowel, or sexual function problems — things I would rather avoid.

Why stop at 70? Turns out, the research shows that annual screenings of men with no other risk factors for prostate cancer do NOT reduce their chance of dying of all causes. In other words, both men who did and did not get screened lived about the same number of years.

My greatest fear is dementia

My greatest fear is that I spend my last years with Alzheimer’s, fully demented and a great burden to my family. Once I get that diagnosis, I would welcome an earlier death by cancer.

Years ago, I heard the story of a woman in a nursing home who no longer recognized her family because of dementia, and she had a mastectomy. They saved her life so she could get more demented.

I did not know this woman and her family well enough to hear about their decision-making process. Perhaps, the patient had stated before losing her mind that she wanted everything done to keep her alive. Maybe, her physicians told the family they had to do the surgery and gave them little choice.

I do not judge this family and their decisions. I take it as a warning for my family and me.

In my case, let the cancer grow

If I live to my 90s but am confined to a wheelchair in a memory-care unit, I do NOT want to be checked for cancer. We do not allow euthanasia in this country, but we do respect a patient’s right to refuse treatment. For me, in the presence of dementia, I would want cancer to run its course. Perhaps this could save my family years of heartaches.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

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