Dear J: Memory Loss Column Gains Widespread Attention


Dear Readers,
On Feb. 28, 2009 A News Cafe published a “Dear J” column titled “My Mother’s Memory is Failing.” In that column, I attempted to give the questioner some direction on intervening ( or not ) on her mother’s behalf. That column generated the response below, which the author, Jacqueline Marcell, offered to A News Cafe to continue the conversation about her experience as a caregiver for her parents.

As I was reading Ms. Marcell’s account, I was struck by the parallels between her experience with her father and the situation that was developing in my own family with my father-in-law.

Several things she mentioned were reassuring as they confirmed steps that were already being taken. One of the confounding aspects of dealing with dementia, or actually any age-related decline, is the fact that, on the surface of things much is similar, but based on many personal factors each case, each person is profoundly unique, requiring the reinvention of a care strategy in most every instance.

Of course, the surrounding family dynamic creates another layer of distinction, so each family is left feeling as though they must pioneer a direction through this maze. Personally, I found comfort in Ms. Marcell’s experience, and help came from another respondent to my column as well. On March 10th, in response to a column titled: “When Someone is Terminal, What to Say?” ‘Steve’ offered a gracious, first-hand account of sitting with a dying friend. His story of that experience opened a window for me as to how I might be able to connect with my father-in-law, by listening, being with him and following his process. The cumulative effect of these responses has been such an unexpected gift, that I want to open the dialogue still further, and invite A News Cafe’s community to counsel with us, to join the circle as we bid farewell to our elders and begin to consider our own exit strategy.

As you can see, Ms. Marcell is quite a resource on this topic, and she has generously provided this article to initiate the discussion. If any of this resonates, regardless of specifics, please take your place at the council table. You never know who may be listening, and need to hear what you have to say.

Respectfully, J

“Dear J” is a north state advice column that offers insight about every aspect of life.  We invite readers to weigh in with suggestions, feedback and answers to the questions, below. Send your “Dear J” questions in care of anewscafe@gmail.com. (We maintain strict confidentiality.)


Elder Care & Elder Rage: Know the Warning Signs of Alzheimer’s!
By Jacqueline Marcell, Author of “Elder Rage”

For eleven years I pleaded with my elderly father to allow a caregiver to help him with my ailing mother, but after 55 years of loving each other he insisted on taking care of her himself. Every caregiver I hired to help him sighed in exasperation, “Jacqueline, I can’t work with your father-his temper is impossible to handle. I don’t think he’ll accept help until he’s on his knees himself.”

My father had always been 90% great, but boy that temper was a doozy. He’d never turned on me before, but then again I’d never gone against his wishes either. When my mother nearly died from an infection caused by his inability to continue to care for her, I flew from southern California to San Francisco to save her life-having no idea that in the process it would nearly cost me my own.

I spent three months nursing my 82-pound mother back to relative health, while my father said he loved me one minute, but then get furious over some trivial thing, call me nasty names and throw me out of the house the next. I was stunned to see him get so upset, even running the washing machine could cause a tizzy, and there was no way to reason with him. It was so heart wrenching to have my once-adoring father turn against me.

The doctor evaluated my father, but I was flabbergasted he could act so normal when he needed to! I could not believe it when the doctor looked at me as if I was the crazy one. She didn’t even take me seriously when I reported my father had nearly electrocuted my mother, but luckily I walked in three seconds before he plugged in a huge power strip soaking in a tub of water-along with my mother’s feet! Much later I was furious to find out my father had instructed his doctor (and everyone) not to listen to anything I said because I was just a (bleep bleep) liar and all I wanted was his money! (I wish he had some.)

Then things got serious. My father never laid a hand on me my whole life, but one day nearly choked me to death for adding HBO to his television, even though he had eagerly consented to it a few days before. Terrified, I dialed 911 and the police took him to a hospital for evaluation. I was so shocked when they released him saying they couldn’t find anything wrong with him. What is even more astonishing is that similar incidents occurred three more times.

I was trapped. I couldn’t fly home and leave my mother alone with my father-she’d surely die from his inability to care for her. I couldn’t get healthcare professionals to believe me-my father was always so sane in front of them. I couldn’t get medication to calm him and even when I finally did-he refused to take it, threw it in my face or flushed it down the toilet. I couldn’t get him to accept a caregiver and even when I did-no one would put up with him very long. I couldn’t place my mother in a nursing home-he’d take her out. I couldn’t put him in a home-he didn’t qualify. They both refused Assisted Living-legally I couldn’t force them. I became a prisoner in my parents’ home for nearly a year trying to solve crisis after crisis, crying rivers daily, and infuriated with an unsympathetic medical system that wasn’t helping me appropriately.

You don’t need a doctorate degree to know something is wrong, but you do need the right doctor who can diagnose and treat dementia properly. Finally, I stumbled upon a neurologist specialized in dementia who performed a battery of blood, neurological, memory tests, and CT/P.E.T. scans. He reviewed my parents’ medications and ruled out reversible dementias such as a B12 or thyroid deficiency. And then, you should have seen my face drop when he diagnosed Stage One Alzheimer’s in both of my parents-something all their other doctors missed entirely.

What I’d been coping with was the beginning of Alzheimer’s (just one type of dementia), which begins intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own bad behavior of a lifetime and his habit of yelling to get his way was coming out over things that were illogical… at times. I also didn’t understand that demented does not mean dumb (a concept not widely appreciated) and that he was still socially adjusted never to show “Hyde” to anyone outside the family. Even with the onset of dementia, it was amazing he could still be so manipulative and crafty. On the other hand, my mother was sweet and lovely like she’d always been.

I learned that Alzheimer’s makes up 60-65% of all dementias and there’s no stopping the progression nor is there a cure. However, if identified early there are medications that in most people can mask/slow the symptoms of the disease, keeping a person in the early independent stage longer, delaying full-time supervision and nursing home care. (Ask a Dementia Specialist about: Aricept, Exelon, Razadyne and Namenda.)

After the neurologist treated the dementia and the depression (often present with dementia) in both parents, he prescribed a small dose of anti-aggression medication for my father which helped his temper without making him sleep all day. (I wish we’d had that fifty years ago.) It wasn’t easy to get the dosages right and not perfect, but at least we didn’t have any more police intervention! Once my parents’ brain chemistries were better balanced, I was able to optimize nutrition, fluid intake, and all their medications with much less resistance.

Additionally, I was finally able to implement techniques to cope with the bizarre behaviors. Instead of logic and reason-I used distraction, redirection and reminiscence. Instead of arguing the facts-I agreed, validated frustrated feelings and lived in their realities. I learned to just “go with the flow” and let nasty comments roll off. And if none of that worked, a bribe of ice cream worked to get my father in the shower, even as he swore a blue streak he’d just taken one yesterday (over a week ago)!

Then finally, I was able to get my father to accept a caregiver (he’d only alienated 40 that year-most there for about ten minutes), and with the benefit of Adult Day Care five days a week for them and a support group for me, everything started to fall into place. It was so wonderful to hear my father say once again, “We love you so much, sweetheart.”

What is so shocking is that no one ever discussed the possibility of dementia with me that first year. I was told my parents’ “senior moments” and odd behaviors were just old age and a “normal part of aging”. Since one out of eight by age 65, and nearly half by age 85, get Alzheimer’s-I should have been alerted. Had I simply been shown the “Ten Warning Signs of Alzheimer’s”, I would have realized what was happening and gotten my parents the help they desperately needed. If any of this rings true for you or someone you love, I urge you to seek a Dementia Specialist-immediately!

(Reprinted with permission of the Alzheimer’s Association)
1. Memory loss
2. Difficulty performing familiar tasks
3. Problems with language
4. Disorientation of time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things
8. Changes in mood or behavior
9. Changes in personality
10. Loss of initiative
Expanded Descriptions: http://www.elderrage.com/alzheimers.asp

Jacqueline Marcellis is an International speaker, author and publisher of Elder Rage, a Book-of-the-Month Club selection being considered for a feature film. As the producer and host of Coping With Caregiving (expanded to include many aspects of health and aging), her interviews with more than 700 healthcare professionals are archived for free worldwide listening-on-demand.ore than 50 endorsements include: Hugh Downs, Regis Philbin and the National Adult Day Services Association

Dear J . . .

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