Aging Parents: As Mother Lay Dying

Among the Things I Wish I Knew…Ahead of Time

Helping parents age well doesn’t end until their heart beats its last beat, to my way of thinking. I didn’t realize I thought (or felt) this until Mother rebounded amazingly for three months after successful heart valve surgery, then went into a coma. (We’d been warned the surgery could stress other parts of the heart and end in heart failure, which it did.)

Mother was already hospitalized when I raced (flew) cross country, rented a car, and broke every speed limit to be at her hospital bedside. Half hour later she was in a coma. Something in me (and I think in Dad) wanted her to be able to die at home. But it was Memorial Day weekend and we learned, upon asking, that getting any kind of caregiver etc. help immediately was out of the question.

An attractive room in the mostly-empty hospice section of the hospital was available and was suggested to us as an option. Local designers had decorated each room individually–very pleasant atmosphere. Regardless of Mother’s state of functioning, she would like this pretty room I thought. She was moved there. Perhaps it made only Dad and me feel better.

Never-the-less I remember going out within the hour and buying fresh fragrant flowers for her bedside table. I wasn’t in denial. She’d always loved the fragrance of flowers and although they say hearing is the last to go, I was uncertain about sense of smell. Looking back, I realize I would do what I could to help my parents age as well as possible until the very end. Today I think that would have included palliative care. We would have been better prepared. If Mother and Dad wanted it, Mother would have been at home and not in the hospital at the end.

This outstanding (to me) NPR radio segment, “How Palliative Care Helps–One Iowa Family’s Experience,” features a family and the physician supporting them. A rare front-row seat, so to speak, of palliative care in action. Those of us who have been helping our parents age well (whether on-site, or from far away like myself), help both our parents and ourselves when we understand outside sources of support (palliative care and hospice) and their differences–way in advance of ever needing them–if possible.

Related:

https://helpparentsagewell.com/2013/03/09/pallative-care-and-hospice-both-help-aging-parents-consider-the-differences/

 “Newsworthy” (right sidebar). Links to timely research and information from highly respected universities and professionals,  plus some practical stuff, to help parents age well.

Palliative Care and Hospice Help Parents Age Well Until the End: What’s the Difference?

“Perhaps the most common misconception about palliative care is
that it is synonymous with hospice care….”
UCLA Medicine Magazine 2009
(Now Called U)

Aging as well as possible, as long as possible

Some time ago I saved the link to Comfort Measures from a 2009 UCLA (University of California at Los Angeles) Medicine Magazine, written after Mother’s death. Prior to reading it, I’d thought palliative care was the same as Hospice. It isn’t. This informative article explains that “…….it plays a prominent role in a dying patient’s life, it is also offered in conjunction with life-prolonging and potentially curative treatments for patients with cancer, heart failure and other chronic and life-threatening conditions.”

In other words, palliative care can begin long before a doctor’s diagnosis that the patient will probably die within 6 months. That’s the diagnosis needed when Hospice offers its services. (That said, calling in Hospice is not necessarily confirming a death sentence. See Hospice link below with information that not all people receiving Hospice care die within 6 months. Some improve due to Hospice’s care and go off Hospice…and can still go back on later.)

Excerpt:

IT WASN’T LONG AGO that comfort and the psychosocial needs of seriously ill patients and their families were not top priorities for medicine, but that has changed. “The relief of suffering and the cure of disease are both obligations of the medical profession,” says Bruce Ferrell, M.D., director of palliative-care services at UCLA. “People sometimes see a rigid healthcare system that can become disconnected from the mission of providing people with humane, respectful care. Our goal is to assist them so that patients don’t suffer needlessly.”

Palliative care – which aims to relieve suffering and assist seriously ill patients and their families to address issues of treatment and support that arise in life-threatening illnesses – is among the fastest growing medical subspecialties, fueled by a number of forces, not the least of which is consumer demand. The Journal of Palliative Medicine estimates that palliative- care programs have doubled since 2000, with more than half of hospitals with at least 50 beds now having such a program. That includes UCLA, which since 2007 has had a palliative-care service providing consultations 24 hours a day, seven days a week, at both its Westwood and Santa Monica campuses….

Perhaps the most common misconception about palliative care is that it is synonymous with hospice care; in fact, though it plays a prominent role in a dying patient’s life, it is also offered in conjunction with life-prolonging and potentially curative treatments for patients with cancer, heart failure and other chronic and life-threatening conditions.

“It used to be that all of our efforts at patient care were directed at curative interventions up until the point that patients were on their deathbed, and then everything turned to comforting them in the last few days of life,” says Dr. Ferrell. “Today, there is greater appreciation for the importance of symptom control and discussions with patients and their families about the natural history of their disease early in the course of the illness.”

Read Comfort Measures in its entirety at: http://magazine.uclahealth.org/body.cfm?id=6&action=detail&ref=702

Related:
https://helpparentsagewell.com/2012/03/24/aging-parents-and-hospice-to-call-not-to-call-when-to-call/

http://www.npr.org/blogs/health/2013/12/16/250194489/how-palliative-care-helps-one-iowa-family-s-experience

Caregiving, Cancer, Computer and Convention Come Together Tonight

Helping Aging Friends

While I should have been writing tonight’s post early this evening in order to watch the convention tonight (I’m a convention junkie every 4 years), my brother calls my cell phone. It’s dinner time in NY. Initially I let it go, waiting for a message. No message. Instead he calls my husband’s cell. I realize it’s important.

My brother’s very good friend, age 75, has cancer. A biopsy taken today may not be back for 3-5 days, but scans show 2 highly suspicious tumors. He’s in the VA hospital.  Should he come to NYC where the experts are–to Sloan-Kettering? Can I recommend someone? While I do know someone who “lives” the medical field and does thorough research, added information before action is needed.

I’m also aware that the sister whom I’ve never met and I assume is in her 70’s, is already caregiver for 2 sisters. One, 82, is confined to a wheel chair; the other has major health issues. The caregiver sister has been the sole caregiver for several years with a little help from her 75-year-old brother. Since all the siblings live together, it’s probable that she will soon have additional caregiving responsibilities because of her brother.

I first learned of the situation on my visit to the Northwest–understood from my brother that the caregiver sister said she didn’t think she “could take any more.” In trying to get her mobility-challenged sister from the wheel chair to the car the week before, she and her brother had fallen and suffered bruises. She was exhausted. And that was before her brother’s probable cancer diagnosis. So last week I complied with my brother’s first request that I speak with the caregiver sister.. He gave me her number and I phoned–trying not to be intrusive.

Caregiving in a Vacuum

The sister was appreciative, basically clueless about support. Visiting nurse services? She’d never heard of them. Social services? Her mobility-challenged sister was receiving physical therapy each week–had been for at least a year–but she didn’t know who arranged it and knew nothing about social services. This woman has been caregiving in a vacuum.

While my knowledge about specific support services in that city is very outdated, I know hospitals have social workers. And since she was spending time at the VA hospital, I suggested she start there and also tell nurses taking care of her brother about her situation and seek suggestions for possible help. Additionally I suggested she discuss her situation with the physical therapist the next time she came.

The writing of this post is halted.

Tonight, at my brother’s request, I once again phone the caregiver sister.  She’s appreciative and begins by telling me that she never would have known about visiting nurses or social workers had it not been for my phone call last week. (She immediately took action and scheduled a social worker’s visit for tomorrow.)

We talk about hospice. Like so many, she has the misconception that one must be on death’s doorstep to use their wonderful services. She never heard of respite. Said she was going to talk to the social worker about that tomorrow.

Then I ask about using a computer to gain information or even share concerns on a blog or website (like www.caring.com) so she wouldn’t feel so alone. This seemingly smart woman is computer illiterate. Never used a computer. While it’s never too late to learn when one has a good mind, it saddens me that she’s without this valuable tool.

*                             *                            *

We do what we can to help aging parents–and  friends and our friend’s and sibling’s  friends. This caregiver sister is doing more than she stretched to the limit, while awaiting the biopsy report. So much is out of our control, yet we can take heart: sharing information and being supportive to caregivers is under our control.

Additional Resources:
http://www.agingcare.com/Articles/When-to-Call-Hospice-and-How-to-Find-One-Near-You-96209.htm

https://helpparentsagewell.com/2012/03/24/aging-parents-…l-when-to-call/ ‎  information from a former hospice nurse concerning when to hospice–as well as the fact that people under hospice care can still go to work, some actually get better with hospice care routines and some come off hospice.

 

Aging Parents and Hospice: To Call? Not to Call? When to Call? 4/3/14 update*

“TAKING NO ACTION, IS AN ACTION IN AND OF ITSELF”

Many no doubt know this. I learned it in my counseling courses, but didn’t fully understand the implications until several years into my counseling career.  Then–to my surprise much later on–I learned those who were entrusted with Dad’s care didn’t completely understand it. Yet its implications–for helping parents age well until the end of life, and for helping ensure their children have no regrets– can be profound.

This morning, while helping a friend ready her manuscript for a literary agent, I mentioned today’s blog topic–to which she responded: “I can’t even talk about it. They called hospice too late for my mother…I can’t even think about it…” Obviously her family didn’t understand…early enough.

Calling Hospice Doesn’t Guarantee Death is Imminent

Carol Bursack has written a number of substantive posts about hospice. In one, “Daughter asks: When should we call hospice?” Carol calls attention to the fact that “Your mom’s health could improve under hospice care, and then she would go off of the program. This happens more than people realize.” (She reiterates this, providing links to additional relevant information at http://www.agingcare.com/Articles/When-to-Call-Hospice-and-How-to-Find-One-Near-You-96209.htm).

“This happens more than people realize.” Most people think “Hospice–impending death.” Wrong– more times than we might think.

The false imminent-death-sentence feeling creates the roadblock, the erroneous worry about loss of hope, the feeling of being responsible for communicating a death sentence to a loved one.  And how awful is that! Do we have the courage to utter the word “hospice” to a parent–as a suggestion or a recommendation… or a fait accompli? Or is our action, inaction–because we just can’t face it.

As with other things in life, asking ourselves “what’s the goal?” can clarify the action we need to take. If our goal is to help parents age well until the end, hospice should be considered when it seems a parent’s condition becomes terminal. Remember “many people get better with hospice care.” (On the other hand, calling hospice at the last minute means it’s less likely the sick person can get better and go off the program, although s/he will be kept comfortable.) A big question is:

How to Talk to Parents About Hospice

Honesty works best. Again and again it proved true during my career. But here’s the thing: it’s how you say it. Offering observations and facts–simply, objectively, and gently– lays the groundwork; as opposed to expressing your feelings. Facts are powerful. And one important fact is: health could improve under hospice care, it happens more than people realize and then they go off of the program. 

Assuming parents are mentally capable, a conversation could begin something like:

Dad/Mom, I know it’s hard and you’ve been so uncomfortable lately, so I want to share some thoughts and facts and have you tell me what you think….
as opposed to
Dad/Mom I hate to see you suffering–you’ve been so uncomfortable lately–so I think we should to get help from hospice. More people than you realize improve with hospice care and then go off the program. Can we talk about it? 

An RN, Experienced in Hospice, Weighs in

Tonight, at a wedding dinner, I was seated next to an RN. She has spent decades involved with hospice. She tell us–

  • Many people do get better with hospice care then are “graduated” by hospice because they no longer qualify.
  • Involving hospice care is not confirmation that someone is going to die within 6 months.
  • It does mean terminally ill people are able to remain comfortably in their home and die in their home with special care to keep them comfortable.
  • Hospice can be used by terminally-ill people who continue to go to work.
  • Hospice can be covered for Medicare Part A-eligible people. *(http://www.agingcare.com/Articles/Medicare-coverage-hospice-care-142914.htm).
  • Many who could, don’t avail themselves of hospice care; and often when they do, it’s at  the very end because that’s when the family makes the call.
  • Hospice answers calls 24/7 (many calls come in at night).
  • When hospice is involved costs for medications and/or equipment needed due to the terminal health issue are covered. (Unrelated health issues aren’t).

This RN hopes to live a long life. If, however, she’s diagnosed with a terminal illness that qualifies for hospice care, she says she’ll contact hospice the moment she meets the requirements and begin preparing for what lies ahead.

*4/3/14 Note: The local Hospice says nothing about Medicare has significantly changed under Obamacare. Double-check by phoning your local Hospice and ask if any part of Medicare Part A has changed under Obamacare.

Related: Help Aging Parent–Hospice. Why Wait to Call?

Check out “Newsworthy” (right sidebar). Links to timely tips, information and research from top universities. respected professionals and selected publications–to help parents age well.



Does Helping Parents Age Well Include Helping Them Die Well?

I think so–at least to the best of our ability

Another dear friend and member of “The Greatest Generation” died this weekend at age 97 (yes, he was in WWII).

He was athletic: swam regularly–pool in winter, Adirondack’s lake in summer; played golf year ’round until he was 95. He was musically talented–a member of Jazz at Noon in NYC, he played guitar on Fridays for decades, then became their vocalist until about a year ago. He grew tomatoes and dahlias, and gathered enough fallen apples from the golf course’s trees to make gallons of applesauce. That’s a partial list.

My first thought when hearing he died was that he loved life. But I quickly realized I had it wrong–he loved living.

His wife, D, was a colleague when I began counseling at the high school. We have remained friends ever since. I was their youngest son’s counselor during his high school years. There are 7 additional adult children from the couple’s first marriages (over 50 years ago).

All adult children (one lives relatively near) and grandchildren, with and without spouses, visited on a regular basis throughout the years. As their father’s/grandfather’s aging problems set in, the woman–who was really a cleaning woman but gave extra hours when help was needed–was replaced by 1 then 2 male caregivers.  They were the best. Their strength alone led to more exercise and other pluses which I’ve written about in past posts.

Care-givers’ gender never entered my mind until Dad’s insistence.  Then I became a convert, thinking aging men should have a choice of male or female caregivers as long as they’re able to give that input.

My now-departed friend had the best ending to life the family could provide: remaining at home, attentive caring-givers, and loving family. If we’re lucky enough to have a large family and a relatively healthy, well-organized spouse as in this case, we can make it happen.

What we can’t control is the medical aspect–the pain, the shutting down–which makes me think: Hospice. Their people, in my experience, lift the burden from caregivers’ and adult children’s shoulders, keeping patients nearing the end of life comfortable–in a competent, compassionate way. They also handle many medical aspects (which can be frustrating and difficult) among other things. I owe them gratitude–never forgotten–when I think of Dad’s final days.

Helping parents age well is a mindset operating over years. Does it include the last days and minutes of our parents’ lives? Do we age from the time we are born until we die? Is dying the final phase of aging? This may be a stretch–but if  the answer is “yes,” then we–probably with some help like Hospice if parents are at home–can help parents age well until the very end.