When Alex Trebek went public to reveal he has pancreatic cancer, he said it was in the interest of full transparency to his many friends. It got me thinking that perhaps I should do the same. Ever since I announced my retirement and later announced that I was selling my boat for health reasons in my family, I received hundreds of inquiries on socials media, mail and in person expressing concern and wondering why and who. So I owe everyone who cares an explanation, so here it is:
My wife Ruth has Alzheimer’s Disease.
Ruth and I have been married for more than 50 years. We met at our place of work, a radio station in Ashtabula, Ohio back in the 1960’s, she was a secretary. Over the years during our marriage, her career spanned the duties of secretary, news reporter, legal secretary, to administrative assistant to Chairman of the Board and CEO of a national health and exercise equipment company and later in life Human Resources for a major golf company in Scottsdale, Arizona.
While I was always somewhat of a celebrity in the towns we lived in, Ruth always handled all the administrative chores of our family. Maybe it was because of laziness on my part, or perhaps because she was so good at it, she did everything. In addition to rearing four children, she did the housework, planned and cooked the meals, did all the financials, payed the mortgage, the car payments, the grocery shopping, cleaned the house, and yes sometimes even mowed the lawn!
I remember when I was managing a radio station in Battle Creek, Michigan, the DJ’s always referred to her as Sergeant Ruth! She screened all my calls. As a matter of fact, I very seldom ever answered the phone, she did. She knew how to handle all this and more. If we ever needed a loan, or buy a car, or talk to a school principal or teacher, Ruth did it.
And more important than anything else, I never, never made any decision without discussing it with Ruth first. She was always my sounding board, with always a logical, down to earth analysis of any decision we had to make. I never went on a vacation without her, never took any time off without her, never went on an all-boys weekend, everything we did, we did together.
Over the last decade or more, things began to change. Her personality changed, we started to have disagreements, bills at times were not being paid. Once I applied for a mortgage to buy a home, and I was told our credit was in a shamble’s because we had missed mortgage payments. A shock to me because I never bothered to handle the family’s finances. Then in social conversations, Ruth began to have trouble completing her sentences.
One day, while driving to work, I was involved in a head-on collision. And after consultation with a neurologist, I mentioned the problems my wife was having communicating. He recommended an evaluation.
In January of 2016 Ruth was diagnosed as having Alzheimer’s disease with mild dementia. In January of 2017 the diagnosis was no change. In January of 2018 the diagnosis was upgraded or downgraded to moderate dementia. In January of 2019 it progressed especially in areas of communication, she has difficulty in forming sentences and forming words, or primary, progressive aphasia cause by Alzheimer’s.
Thank God that I was successful enough in my career where I was able to retire in August of 2016 so that I can spend all my time caring for her. I am her full-time caregiver. Now the tables have been turned. I now do everything.
In addition to being a full-time care giver for my wife, I’m, of course, also handling the family finances, paying the bills, planning and cooking meals, cleaning house, and raising our 13 year old granddaughter and so on. I never leave the house without my wife even if it’s just to go to the mailbox or take our granddaughter to school. She is always in my sight and in my care. It is a big challenge, there are, at times, when I think that it is beyond what I can handle. It would be great to talk to people about it, but I’ve learned that most people tend to ignore the topic when it comes up in conversation.
And I am grateful for the Banner University Alzheimer’s Institute. During the first two years of Ruth’s diagnosis, she was being treated by the Mayo Clinic, and I thought it was not good. The doctor kept saying you have Alzheimer’s disease come back in a year. In her last appointment with the Mayo neurologist, he told us there was not much hope, “pharmaceutical companies were giving up on research.” What an insensitive thing to say, Ruth cried as we left the Mayo Clinic never to return.
We’re now in the Banner University Health system, and at least there is on-going help for Ruth and for family members. So far, it’s been good. They have put her in various forms of activities, Physical Therapy, and have put us in touch with caregiver seminars where we can split off and Ruth goes to be with other patients for activities, and I can discuss and share experiences with other caregivers and learn more about what to do, and at least we feel that we are not alone. Far different than what the Mayo Clinic did, which was to say, “See you next year!”
I’m experiencing what Alzheimer’s researchers call “Ambiguous Loss.” The woman I married is slowing going away, but her physical being is alive. It is a tough concept to accept and one that bewilders and stresses out care givers. Ruth’s personality has slowly changed to being very compliant, and sweet and gentle, which I am grateful for, but it forces me to stand alone in the world to being her caregiver and raise our 13 year old granddaughter by myself.
We had a sailboat in San Diego, but I was forced to give it up, because traveling there from Phoenix, AZ back and forth, and sailing was getting to be a hassle. It was past the point where Ruth was unable to help in the operation of sailing, and mostly she just sat on the boat while we were out on the water and stared at her feet.
My two big dreams since I was 12 years old were to do a TV Talk Show, and having a sailboat on the ocean, both of which I am grateful that I accomplished, but had to give up.
So now we are just together 24/7. At home, we get up in the morning at 6am, get our granddaughter ready for school, drop her off and head off to the gym which is getting to be a real challenge for her. Afterwards we are home, drinking protein shakes, and vitamins, and turmeric and coconut oil and all stuff that rumored to be good for her, in addition to her prescribed meds. Our social life is mostly going to medical appointments, Physical Therapy etc. and watching Netflix. Recently, the Banner Alzheimer’s Institute enrolled Ruth in the “Passport to Music” program at the Musical Instrument Museum, where she learns music history and we sing and play instruments together with a group of Alzheimer’s patients and their caregivers.
And I am watching her slowly drift away.
But we are together and I still see her as the most beautiful woman I have ever met, and I love her very much and now have dedicated my life to protecting her and keeping her close.