The Wednesday chapter of AN AGREEABLE MAN will be updated on Friday, August 4.

A few years ago, I was commissioned as a researcher/writer to write an article for a Nashville publication for a very nice sum of money. The publication asked me to tie together the services of several local providers to the needs of local seniors, and asked that I personalize it – “humanize” it – by adding in some real-life stories. From first hand experience, my husband and I had had to deal with the failing health of our mothers during the past few years. Between their two very different situations, we had run the gamut of problems (and solutions) inherent in many senior care issues. And so, I began by interviewing the heads of the service providers that the magazine wanted me to publicize, got background statistics about  the Senior Care industry, and mixed it all together with our family-based “real-life” experience. Then I felt I was ready to write.

When I turned in the article, I received a nice letter and a check for $1500! However, as I read the letter, I became very upset! The president of the magazine who had assigned me the article told me that they were paying me for the “background information” I had written. But they couldn’t use it as an article because it was not believable – ! I called the president and told him that not only was every written word true, but also I had left out the truly bad parts. As he talked on, I realized he had no concept of what “elder care” involved.  

“Sir, how old are you?” I asked. “Thirty-five,” he answered. “Do you have a plan for your parents when they need your care?” “Uh, no,”, he said, “but they are relatively young and I won’t have to face that situation for a long time…” 

Oh, my…

That’s when I told him I had torn up his check and would mail it back to him that day. I also reminded him that I now retained all rights to this submitted-but-not-published article, and that I would encourage him to get a researcher of his choice to look up the problems inherent in caring for family members and see how “unbelievable” my article was in comparison.

Here is Part One of the article I submitted, which was never published…until today.

Like most problems in life, the topic of making healthcare decisions for one’s parents seems a benign issue – until it happens to you.  Suddenly, or gradually, you will be called on to make life-changing decisions that will affect not only the lives of your parents, but also your own personal and family life. Trying to do the “right thing” for either group puts you squarely in the middle, and can rob you personally of your success as a family member and a business person, not to mention your own health and well-being. That is, unless you have an understanding partner and some resources that can help you every step of the way in making informed and wise decisions.

Many of us are planners: we like to peer into the future and choose options for dealing with what we think the future holds so that we can be prepared when it comes. If we don’t plan ahead, the default plan is crisis management. Senior care issues are often precipitated by one or more crises, few of which lend themselves to neat solutions unless we have taken the time to inform ourselves beforehand.

Take, for example, the situation of my husband’s mom. After her husband’s death, Mom lived alone for 20+ years in a three-bedroom house that was centrally located to her church, her grocery store, and her hairdresser. She was able to drive to these places and manage her own affairs well into her late 80s. When Mom broke her ankle while planting flowers in her front yard, she had to have home health care for six months, and really bonded with her “visitors.” She loved the company!  On one visit, she introduced us to her “vampire,” eyes twinkling, referring to the nurse who drew blood to check her vital signs. Eventually, she needed more care, and went to stay with her daughter and son-in-law in another state. Soon other decisions had to be made because both of them were working full-time.

Fortunately, Mom’s retirement income allowed her the option of moving to a step-down facility since she was capable, at that time, of independent living. (This was comparable to living in a hotel: there was maid service, meals taken in a nice dining room, activities to do with people she came to know and get along with. And there was a schedule to her days, and people to talk with.) She lived in a one-bedroom apartment with a living room, a small kitchenette and a little balcony. Although she used a walker, she managed to perform most daily activities without assistance.

Mom was incredibly healthy. She bore her two children in a hospital 50-60 years ago, and managed to stay out of the hospital until she broke her ankle late in life. When she went into the independent living facility, her blood pressure, cholesterol, triglycerides and weight were all normal. She never had smoked, and lived the moderate lifestyle of a stay-at-home wife and mother who cooked three meals a day from scratch and supported her family members in all their activities with her love, help and presence.

Eventually, her mental abilities began to decline, and she was moved to the assisted living side of the facility with the same apartment set-up but with more care. She was checked on at more frequent intervals and escorted to meals and other activities. Finally, she was moved to another floor whose tenants were in various stages of dementia and Alzheimer’s. She was 93.

During all of this, my husband and his sister had to make some major decisions. What should they do with their mother’s house – which had been vacant for a couple of years – and with her things? They agreed to get the house ready to sell, but when they began looking for the title to her house, they were in for a surprise. While still driving and apparently mentally competent, Mom had gone to her bank and emptied out the safe deposit box and had taken everything home “for safekeeping.” Many sentimental items were lost.

(Incredibly, we had just been down for a visit with her and had gone to the bank to make a list of the things in her safe deposit box at her request. She was looking for the names of her husband’s pallbearers.) Documents had to be recreated through the legal system before work could be started on her house to get it ready to sell, and her pre-paid burial policy had to be re-created as well. Both my husband and his sister got Durable Power of Attorney so that they could act on her behalf. Fortunately, Mom had made a will years ago, as well as a Living Will.

My husband and his sister tried to split the burdens that having someone’s life imposed on your own presents. Mom’s house was in one state; my husband’s sister and her husband lived in another state; and we lived in a third state. We made many trips back to Mom’s house, dealing with contractors and suppliers to get Mom’s house in shape to sell. After a couple of bad experiences, we hired an excellent realtor. Whatever money the house brought would go toward her care because Medicare paid nothing for Assisted Living care. Mom’s daughter saw to her day-to-day finances and needs, and came by often to visit.

However, when my husband’s sister had major surgery requiring many months of recuperation, and her husband had a heart attack, they did not get to visit Mom for several months, and Mom’s condition quickly deteriorated. On one of our house renovation visits we brought Mom’s brother for a visit. She did not recognize him. On another renovation visit, we were reminiscing with Mom about when my husband – her son – was a small child.  She laughed delightedly and clapped her hands. “You mean I have a son?” she asked. Chills went over me and my husband. “Yes, Mom, I’m your son.” They hugged and then sat back down. “Now, tell me,” she asked my husband, as if on a new topic, “how do you fit into the picture?” She had forgotten the concept of what a “son” was.

Below are some of the “real-life experiences” that I left out of the original article.

Our visits were always unsettling. Here we thought that Mom was being well taken care of, but a combination of events made her every day life miserable. Early on when she went to the dementia wing, she still had enough presence of mind to follow us to the elevator when we got ready to leave. “You know the way home,” she said, and she tried to get in the elevator with us. “No, Mom, this is your home now.” She looked very confused and uncertain, and we were heartbroken. One of the nurses took her back to her room.

Another incident made me so angry. We couldn’t find her when we dropped in for a visit a few months later.  Her room was just a couple of doors down from the nurses station, and the hallway was filled with an extremely high volume of loud music.  When we asked where Mom was and commented on the music, they said she liked it loud.  They unlocked her door – ! – and sure enough it was her TV turned up so loud that my ears hurt.  Mom lay on the bed, immobile. Honestly, I thought she might be dead. She wasn’t, but their assessment of her as “liking” the loud noise, and locking her room so that she had no escape from the noise, was mind boggling. The solution to that problem was to leave the door unlocked, and to keep the TV off, as she no longer could process the programming.

Another time, our visit was over about noon and the nurses told her she could come to lunch. She told me that she really would rather not eat, if she had to sit at a table with crazy people. No wonder she lost weight during her last months there. So many more incidents like this have come to the surface in the writing of this blog.

I am crying as I write this! I just have to file these memories away for the time being, but I must tell you this: I took copious notes of Mom’s comments and our observations during our visits, just as I did with my Mother’s decline into institutionalism, and someday they will emerge in a book. I am staring my future in the face and if my husband and I don’t help our children plan for our care, who knows what is ahead for us?

Watch this blog Thursday for the next part of this series on Senior/Elder Care, in which my (now-deceased) mother’s institutional experiences will be presented as well as those of her sister, who is still living in an assisted living facility – and loving it!