How EZ will life changes be?

Today, I made an appointment for a dementia care educator to come to our home to assess our needs for assistance and to identify resources that may help in providing that assistance.

This service is provided, at no cost, through the local Hospice of the Valley, a 501(c)(3) not-for-profit organization serving Central Arizona and is funded by a federal program. The home visit will be from a dementia educator who teaches behavior management strategies for dementias, and helps with medications, placement options and other available resources, and living wills. Our assigned educator is named Kobie. I learned of this program recently while listening to a local NPR program while working in my garage.

My concern is that my dear wife, Glenda, is showing very clear signs of memory loss. She has been evaluated by our primary care provider and by Dr. Ashby at the Barrow Institute in Phoenix. They have not diagnosed her with Alzheimer's, but verify some level of age-related dementia, possible related to the stroke she suffered in 2009. The memory loss becomes obvious in conversation with her and in the fact that she can't remember what year it is, who is our President, and such. She also has gotten to where she won't leave home alone, even for a local walk (with very limited exceptions) because she fears she won't be able to find her way home. In addition to the memory concerns, she is nearly blind from age-related macular degeneration (dry), and has balance, fall, and movement problems caused by orthostatic hypotension as well as incontinence problems related to age and birthing our five children.

I am her primary care giver and non-medical attendant. I cook and serve meals, clean, arrange medications, shop, provide all transportation, do laundry, help her with selecting clothing, manage her audio-book library and tools and more. We are both 73 years old. Here's the kicker: I am a cancer patient, currently receiving care for two different forms of metasticized cancer. Plus I have the spectrum of old, overweight, white-man health problems: High blood pressure, AFIB, aortic insufficiency, GERD, etc. My health and family history do not indicate that I'll have a life span equal to Glenda's. What happens when I am, for whatever reason, not able to provide the care she needs?

To be, or not to be. William said that that is the question. Our question is a little more complicated that that. I doubt there will be EZ answers, but I am hoping that the Kobie can help us understand what is needful and what is possible.

Therapy begins easily

I took Glenda to her first appointment for the Mind for all Seasons Enhance Protocol today at the Summit Memory Clinic on Signal Butte Road in Mesa. We earlier had her blood and urine collected for the laboratory panel at LabCorp in Queen Creek. 

Glenda on Light Therapy device.

Glenda on O2 saturation test machine.

I think it went very well. They did some more comprehensive cognitive testing (we get results with roadmap in a week or so), we've had the specimens all collected for the lab panel, she did very well, indeed, on the exercise machine with O2 monitoring -- Robeson Flynn, her memory coach, was impressed at how well she did on that test. She had a bit of anxiety with the chilling in the chair with the optic therapy headset, but once she understood that all she had to do was relax for 30 minutes and I put on some soft music for her (I sat in the room with her), she was fine. Afterwards she said it was good. We may take her earbuds next time so she can listen to a book during that 30 minutes.

How are you? Fine, thanks. That's the EZ answer.

Today I realized that 'fine' is a very subjective concept.

As Ms. G ages and has had various health challenges, family and friends often ask how she is doing. Often, my response is, "Fine." And most days she is fine, based on the current subjective definition of 'fine' in the objective situation we live in.

A fine day for G means that she woke up feeling good and relatively alert. After arising, she walked safely to the kitchen. Hungry, she ate from the breakfast prepared for her. On a fine day, she can (and will) shower and dress herself and take care of her dental hygiene. She can get her morning medicine from the daily dispenser with only needing help to remember what day of the week it is. She will want to listen to the audio version of her scriptures for at least 30 minutes on a fine day--she can't read them anymore due to failing vision. A fine day may find her spending most of an hour in our community gymnasium working on the stationary bicycle and the exercise machines, after safely walking the 100 yards from our front door to the community center. Later, on a fine day, she may enjoy the lunch prepared for her and then an audio book before a nap. She may call her sisters or one of our kids. On the occasional days that she is better than fine, she may unload the dishwasher or fold a basket of laundry. 

On a fine day, she doesn't ask what city we live in, or what year it is. Or how many children we have or if her father is still alive. She doesn't faint from orthostatic hypotension on a fine day, nor stumble and fall while walking. On a fine day she doesn't sleep for 18 hours, or get lost in our yard. 

Not all of our days count as 'fine.' But most do.

The saga of an EZ life

For much of my life, I have felt as though my existence was charmed, and I often wondered why, even feeling, perhaps, a bit of survivor's guilt knowing that I had done nothing especially worthy of the gifts with which I had been blessed. I've not been notably good nor notably bad, either. In fact, I have noted that I'm not very good at being bad, but I am pretty bad at being good.

I lived a comfortable life - so many worked so much harder and not been so blessed.
I achieved a fair rank - so many served with so much more distinction and did not progress as far.
My health problems were always minor - so many took much better care of their health and yet suffered.

And it goes on this way in every aspect of life. I am, at age 65, married to my childhood (literally) sweetheart. We recently celebrated our 47th anniversary. We raised a relatively large family and have been blessed with healthy and honorable children and now grandchildren. We lost none to accident, violence, disease, drugs, or prison.  Unfortunately, I know many parents who cannot say the same thing. We have a supportive community and many good friends.

I was born late in my parents' lives, so never knew my grandparents. My mother's father died when I was about 2 years old -- the others all gone long before that. I have lost my own parents, one sibling (who passed at about age 72), and now my wife has bid final farewells to both of her parents. This would seem to be just the normal course of life, events to be expected in any life.

The fall of 2015, though, seems to be different, with a variety of things coming to a head sort of all at once.

First, I'm having my first real health challenge (at least not of my own making) with a diagnosis of prostate cancer. I have earlier written about this.

My beloved wife has had a series of health challenges, but the most bothersome has been a condition called orthostatic hypotension. When she stands, her blood pressure drops and the body does not react to compensate. She has had several severe falls from blacking out. We've had every known medical test performed and cannot find the cause. Doctors say, "learn to live with it."

We are blessed that we have good health insurance to offset the costs -- many are not so blessed.

One week ago, my eldest brother called and he was very agitated, going on loudly about things that had him upset. Things that just could not be true. Now he is resident in a mental care facility as he's just lost touch with reality, apparently through dementia, and was judged to be a threat to himself and others. Just two weeks ago, this noble and robust warrior celebrated his 81st birthday.

During that same week, I received news that my eldest sister, born in 1932, has been diagnosed with uterine cancer.

Later that same night came the call summoning my wife to return to Idaho for her father's funeral.

The change to Social Security rules signed into effect by law in early November impacts our pending retirement plans as it effectively reduces our income for next year by over $7,000.00 due to the elimination of a program that we had planned on as an integral part of our retirement program. The program called "file and suspend," ends the day before I would have been eligible to enroll.

Having so many stressors all at once, I have to say, has been hard for me to deal with. There have been recent days that I have lost my temper needlessly and I have struck out at inanimate objects. There have been days I've not been able to concentrate, nor relax, nor work. There have been nights without sleep. So much all at once after such a long life of minimal trouble reminds me of a recurring nightmare that I had throughout my teen years: In my dream, after a lifetime of pushing a huge rounded boulder up a steep hill, just as I reached the apex of the summit, where the rock could with one more push, tumble freely over the other side, my sandal-shod foot slipped and I fell face down to be crushed by the boulder rolling back onto me. After my teen years, the dream left me with only very rare occasional replays.

At the time, I did not know of the myth of Sisyphus--the exact story of which I was dreaming. But I know the story now, and as I reach the entry to my "golden years" and retirement, after a lifetime of work, am I to be Sisyphus?