Book Review

Another wonderful book that I highly recommend is Carol Bradley Bursack’s “Minding Our Elders."

Back when I was the frazzled son of an aging mother with dementia (during the long months prior to her death), I found validation and comfort in Bursack’s exceptional book. Eldercare is often a lonely business and one that places a profound mental and physical burden on the caregiver. Healing begins with the discovery that one is not alone. “Minding Our Elders” provides ample evidence that eldercaregivers have plenty of company these days.

Bursack uses a professional journalist’s interview technique to compile the trials and challenges of over twenty-five caregivers who have poured out their hearts to her.

There is a relaxed intimacy to her writing style that immediately engages the reader. It feels as though each of her subjects has become your own personal friend who is quietly sharing with you the private pain associated with care of their loved one.

Bursack introduces each person with a description of surroundings, clothing, gestures and expression that reveals a sharp eye for detail—the kind of detail that imbues the people and their stories with humanity. Her faithful and insightful reporting of these stories, told in each caregiver’s own words, has created a sensitive and well written book that is must reading for anyone facing the decline of a parent. More information can be found at: http://www.mindingourelders.com

If you do read “Minding Our Elders,” let me know if you agree with my review.

Why is Mom doing this to Me?

Have you ever asked yourself this question when your loved one with dementia is being obnoxious? I did. Frequently. Then, of course, I felt guilty for having this reaction. Here’s what the social workers told me:

"First of all, it’s a normal question about normal behavior for someone with cognitive decline. Many dementia sufferers have difficult behavior patterns, including such things as overeating without remembering they just ate, asking the same questions repeatedly, physically aggressive actions, removal of clothing in public, loudly insulting people in public places, and... (you can fill in the blanks I am sure with many other behaviors.)

Second of all, it’s not “about me.” It’s about her...or him...or them. It’s a disease process—an illness. Your loved one cannot control the symptoms of this sickness any more than if it were pneumonia, or heart disease, or cancer, or any other dread condition. Things are happening in his or her brain that affect behavior."

Chances are your loved ones would have been embarrassed to death if their earlier, healthy, selves could see them now. It’s up to us as caregivers to recognize that they are not “doing it to us,” and to forgive them—daily if necessary. They just can’t help themselves.

I know it’s hard to do this when Mom tells you your brother (or sister) is more caring, more solicitous, more anything than you when you know that the sibling in question has run the other way as fast as his (her) legs can move (without ever looking back). She doesn’t mean it! And don’t blame your sibling for running. You would too if you could, wouldn’t you? (Not really, but you do think about it, don’t you?)

So recognize the wisdom of the “social worker” advice I’m passing along. If you can get yourself to ignore the behaviors as symptoms of disease and not take them personally (even when they seem to be personal), you’ll be a much happier person and a better caregiver for your loved one with dementia.

My Learning Curve

Just when I thought I knew who my audience was, I discovered a group that I hadn’t consciously considered before. Here’s what happened. I was asked to speak about Dementia Diary at a Catholic university. My audience consisted of quite a few Nuns with caregiver responsibilities for Sisters afflicted with various kinds of dementia. Until then, I thought of my readers as mostly children or spouses of loved ones. Since then I've realized that the group is so much broader than that and so is my thinking. Dementia affects ALL categories of human beings...so, of course, members of religious communities, unmarried adults, significant others, residents of group homes, etc., etc., etc., all can have people in cognitive decline and caregivers struggling with their welfare. In retrospect, that should have been obvious—but my learning curve finally caught up with the reality.

Hospice: The Journey’s End

Hospice is one of the really humane programs in a health care system that sometimes seems to be more dollar oriented than patient oriented.

As a health care executive, I was active in the early days of the hospice movement. In the late 1970's, I was CEO of a hospital in Kansas City and Chairman of the Planning Committee to establish Kansas City Hospice as a joint project of four area hospitals. It's still going strong and I'm proud of the role I was able to play back then.

Since then, I've had personal experience as a beneficiary of hospice support for family members. My mother-in-law died in the early 1980's in a West Palm Beach, Florida hospice that eased her last days and assisted my wife and her sister to cope.

More recently, my mother received hospice services in her nursing home from Hospice of Michigan. I really appreciate the support HOM provided during her end stage and final passing.

Sometimes dying patients and their families are unaware of the availability of such services. All too often, their physicians need to be educated to refer the terminally ill for hospice care.

If you or a loved one is nearing the journey’s end and the doctor has not mentioned hospice, don’t be bashful. Take charge! Research your local hospice programs and make your own arrangements. You won’t be sorry.

The Day She Tried To Eat The Mirror!

Let me describe a typical nursing home visit toward the end of Millie's life. It was the end of lunchtime. Mom was asleep in her wheelchair with a half finished plate of pureed stuff—green, brown, stuff—and clutched in her hand upside down was a small carton of the fortified chocolate shakes she likes so much. The contents of the shake was all over her bib and clothing and there were no attendants handy to clean her up. She smiled weakly when she saw me and, I think, recognized me, but her energy level was clearly low.

Anyway, I wheeled her over to her room where my wife was busy exchanging her summer clothes for her winter clothes and parked her against a wall so we could chat (or try to). She was sliding down in her wheelchair and I noticed that no one had bothered to attach the wheelchair footrests (again). I found the footrests in their usual spot under her bed (?), attached them and tried to lift all 140 pounds of her into a more comfortable position. I couldn’t do it myself, so my wife came over to assist and, together, we managed to improve Mom’s posture slightly.

All this time no staff person offered to help, so my wife cleaned Mom’s lunch off her clothing as best she could. Mom was sporting a stylish new haircut, so my wife took out her compact mirror and gave it to Mom so she could see how she looked. She seemed really interested and stared at the mirror for a long time. Great, we thought. She still cared about her appearance. But our pleasure soon evaporated as Mom lifted the compact to her mouth, licked it with her tongue, and tried to eat it. She must have thought it was a cookie.

Another possibility is that vision, hearing, smell and taste are so far gone with her that touch—tactile experience—is all she has left to gather information. Perhaps she wasn’t so much trying to eat the mirror as to identify it—but as I said in another article: who knows?

Suddenly she started holding her throat as though she was in great discomfort. It could have been a swallowing issue, reflux, heartburn, breathing problem...or none of the above. She could not articulate the answer but nodded affirmatively to a suggestion of water. She drank eagerly, and swallowed easily, until she aspirated the water and began to choke. Still no staff member was near enough to observe and to help.

Finally, we tackled an aide who was passing by and learned that Mom’s assigned aide went home early because she had spilled something on her clothes. Staffing levels being what they are, that meant that Mom would be unattended until the next shift. Because we were there and making demands, we got a promise that this aide would add Mom to her already huge caseload and keep an eye on her until shift change.

So the question is: if this was the situation when family members were visiting, what was it like when we weren’t there? If I thought she would get better care in another home, I would have moved her in a heartbeat—but there were no better alternatives available in our area. So what would have been gained by putting her through the trauma of moving? Not much in my judgment.

I know of no happy nursing home experiences. If you have one to report, please share your story on this blog. It would be a real morale boost for the rest of us.

What? Take Away My Car.....!!!!

In the September 2003 issue of the AARP Bulletin, John Eberhard, former senior research psychologist at the National Highway Safety Administration, wrote, “Telling seniors they can no longer drive is as hard as telling them they have terminal cancer.”

What caregiver has not faced this issue? How to tell Mom or Dad that it isn’t safe for them to drive and to hand over the car keys? For me, this was one of the hardest things I had to face in the 16 years of being my mother’s caregiver. I write about it in my book. See the chapter entitled: “Should a Caregiver be a Cargiver?”

As a society, we need to become much more creative about meeting the need for independence and transportation mobility among older adults while at the same time protecting the public’s need for protection from sensory deprived drivers. Fortunately, there are several new models of transportation systems that bring exciting possibilities to this sticky issue. To my mind, the one that deserves the most attention is the Independent Transportation Network® and ITNAmerica™.

Here is a quote from ITN’s website:

“ITN provides rides with door-to-door, arm-through-arm service to thousands of seniors nationwide. It's a truly innovative solution with unique programs that allow older people to trade their own cars to pay for rides, and enable volunteer drivers to store transportation credits for their own future transportation needs. ITN's Road Scholarship Program converts volunteer credits into a fund for low-income riders, and the gift certificate program helps adult children support their parents' transportation needs from across the street or across the nation.”

I strongly recommend the review of the ITN website by all community leaders interested in addressing this important issue:

http://www.itnamerica.org/

I think you will find it to be innovative and challenging, and worthy of widespread emulation.

When A Parent Has Nine Lives

Something occurred to me after writing the last post about my mother’s 93rd birthday. I recalled a conversation she and I had when she was in her late 70’s and the signs of her early dementia were barely noticeable. At least, I hadn’t yet noticed them. Whenever I expressed worry about her health, the conversation would go like this:

“Don’t worry about me, Bob. I have longevity.”

“What do you mean, ‘longevity,’ Mom?”

“I mean, like a cat—I have nine lives.”

Since Mom had a lifelong aversion to cats, this struck me as an unusual comment for her. Also, my wife’s parents and my Dad had already died, and all three passed away at the same age: 83. Of course, I hoped Mom would get past that number, but I had no reason to really think she had “longevity.” So I asked:

“Ma? Like a cat?”

“That’s right—nine lives...just like a cat.”

“OK,” I bit, “so you have nine lives. How many have you used up?”

“Don’t worry, I have plenty left.”

“How do you know?” I asked, realizing that she was serious.

“I just know. You watch. I have longevity.”

So I watched...and watched...and watched...and watched. 83 passed...and 85...and 90...and, finally, 93. She was right. She did have longevity. Oh how I wish she was able to enjoy it!