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!

When Life Is No Longer A Joy

While Mom passed away some time ago, I recall her 93rd birthday. Once or twice before reaching that milestone she seemed to finally be getting ready to leave us but, each time, she did what her nurses call one of Millie’s 180’s and again postponed her inevitable date with death.

I don’t mean to sound so casual about it but, truthfully, her quality of life had declined so much that I couldn’t see what joy she experienced from getting through her days. I don’t think I would want to live like her if I were at that stage—but who really knows what, if anything goes on in the head of a late stage dementia patient?

Mom had been receiving hospice services for over a year, the hospice having accepted her into its program after deciding she had but a short time left to live. The thing is though—no one asked Millie (Minnie in the book), and she went on and on in spite of expectations. Maybe this was good news. I like to think so, although I did have doubts whenever I visited her. It broke my heart when I recalled the vital, dynamic bundle of energy she used to be.

At 93, she was total care, never leaving her wheelchair, prefering to sleep in her bed most of the day,not participating in most of the recreational activities at the home, rarely speaking and when she did it was usually a one word response to a question. She'd lost a lot of weight for several months as her appetite lagged, but gained it back quickly when her diet was changed to thick liquids. Seems she couldn’t swallow whole foods any longer.

Her eyes would close as she drifted off into sleep moments after a visitor greeted her. And yet...and yet...she still lit up when she saw me (for a few moments at least). So again...who really knows?

Do You Remember.............???

People with dementia, especially in the early stages, are frightened by what's happening to them. Caregivers need to be sensitive to what they say and how they say it.

For example, it's very tempting to introduce comments about past events with the phrase:"Do you remember..." This should be avoided.

It's very hard to do (I should know as I've been there and done that in dealing with my mother's dementia). This phrase reminds the dementia sufferer that he/she has memory issues. The response will either be agitation or else a "Yes, I remember," which may or may not be true.

Many dementia victims are good at covering up their deficits when confronted with such a question. It's important for their dignity and tranquility for caregivers to be alert to small things like this.

More on the Caregiver's Conference

The purpose of this conference was to educate and support an audience of caregivers who were struggling, largely in isolation, with all sorts of issues, and to provide an opportunity for them to share experiences and to ask questions.

At first, I didn't want to make a presentation about my mother. I thought it would be an improper invasion of Mom's privacy to talk about her in a public forum. I knew I would have to talk about her long, slow, 16 year descent into the opaque fog of multi-infarct dementia. This is an emotionally powerful subject for me and, even though I have done a lot of public speaking, I wasn't sure I could handle this one in a calm and professional manner.

But the program sponsors prevailed. All of the other panel participants were women, they told me. They said that the program needed a man who was willing to share his experience as a caregiver, as well as his feelings. Men don't easily do this kind of thing, they said, so "please," they pleaded, and finally wore down my resistance. They pointed out that lots of men are caregivers and that these listeners would appreciate hearing a presentation by a man about this sensitive subject.

In retrospect, they were right. The male caregivers in the audience, and there were many, directed most of their questions to me, and quite a few approached me afterwards to thank me. They suggested that a book describing my experience as a male caregiver is urgently needed in the marketplace. Existing books, they said, do not address their feelings and unique responsibilities as sons and husbands.

I also asked many of the women present at the conference if such a book would find a readership among female caregivers. Interestingly, they thought it would, that women, too, would benefit from reading a man's point of view on the care giving experience.

The resulting book: "Dementia Diary, A Caregiver's Journal," is my memoir about what it's like to be the only child, a son, and the caregiver of a widowed and cognitively impaired mother who lives alone half a continent away.

Alzheimer's and other dementias are diseases that know no boundaries. They are blind to the categories in which we usually place our fellow human beings. They can occur at the age of 55 or 85. They can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. Ex-presidents have not been spared.

Tears are shed by husbands and wives, sons and daughters, brothers and sisters, in fact anyone responsible for the care of a loved one with dementia. I hope that this book will help all such wonder-workers to understand that they are not alone. My mother would want it that way.

Can Dementia Ever Be Funny?

The inspiration for this post was a talk that I recently gave to a conference for caregivers of loved ones with Alzheimer's Disease and other dementias. The speakers included a psychiatrist, a geriatrician, and a panel of four caregivers--one of whom was me.

I learned a lot that evening. The presentations and audience questions taught me that the kinds of bittersweet anecdotes I described about my mother's dementia are the common lot of all who deal with the reality of dementia in a loved one.

And surprising (to me at least) the audience found many of the anecdotes that I reported to be hilariously funny. Many had experienced the same kinds of behavior with their own loved ones with dementia. It was clearly a relief for them to hear these stories spoken aloud.

It helped them to realize they were not alone, and so they laughed--laughter that was unexpected but very welcome--laughter that helped to reduce the tension of these caregiver's daily caregiving stress.

It is my wish that caregivers will see beyond the sadness, tragedy and, yes, comedy sometimes associated with the evening hours of life, and will recognize that dementia, while terrible, does not diminish the essential humanity of the afflicted individual.