Coping with a Loved One’s Diagnosis

By Mike Jacquart

\”My name is Mike. I have a diagnosis of depression and ADHD. My mood today is....\”  \”I also have a loved one with a diagnosis…\”  Those of us in a Fresh Hope support group are very familiar with the first part of our introduction. But after seven years in a Fresh Hope group, the second part was new for me.

Until recently.

My sister, Tina* was diagnosed with Alzheimer\’s disease earlier this year. (*Names and places are changed to protect privacy). It was a whirlwind year. In January 2024, we went with Tina to the memory center at the Mayo Clinic*, where preliminary memory testing was conducted at that time. The results indicated she had memory issues and began further testing for Alzheimer’s. Tina was devastated at this time, even though the Alzheimer’s diagnosis had not been confirmed (and would not be until May). Devastated might be an understatement. Unable to hold back her tears (or those of my wife and I), a flood of emotions erupted. \”Why me?\” \”How did I get this?\” \”DO I, in fact, have it, and if I do, what do I do next?\”

It was a far cry from my diagnosis twenty years earlier, when I was actually relieved to find out I had behavioral health disorders that could be improved with medical/psychiatric treatment. Alzheimer\’s is a different matter entirely. This degenerative brain disorder causes a decline in mental abilities that affects thinking, memory, and behavior. Early symptoms include difficulty remembering recent events and can progress to difficulty carrying on conversations, performing daily tasks and changes in behavior and personality. Some of these were clearly occurring. Tina did not recall her sister Melanie\’s* knee operation in November 2023, and she was having great difficulty balancing her checkbook, a task she used to do with ease.

But the dreaded \”A word\” was perhaps even worse than the symptoms themselves. The Alzheimer\’s Association estimates that 6.7 million Americans age 65 or older have Alzheimer\’s disease in the United States. (Tina is 75.) According to the AA, that number could nearly double by 2060. While certain medications can slow its progress, there is no cure at this time.

That was the easiest part of this blog post to write. Learning what it is like for someone living with the disease, and all that it entails, involves a great deal of stress and uncertainty, for loved ones, as well as for the individual with the affliction. I dare say, with more ups and downs than a roller coaster, it may have been the most difficult emotional experience I have had in my life.

For instance, Tina called us repeatedly over the phone with what we learned are termed \”delusions\” – events she insisted were true, or occurred, even though they had not. For starters, Tina accused me of putting personal information about her finances on Facebook. (I hadn\’t.) She also said her sister Melanie, and her boyfriend had broken up and wanted Tina to move in with her. (Neither was true.)   I could list numerous other examples.

Even worse than the specific delusion is the stress and worry it causes. Imagine relaxing in your living room, watching TV, when a sibling calls, upset that \”you don\’t love me anymore\” (certainly not true) or \”why are they evicting me from my apartment?\”  (No one was.)

It was during this time that conversations began with Tina\’s primary physician and then a neurologist to determine if it was safe for this person to be living at home. (Tina is single, and lived over 2 hours from us.) And while all this is going on are the repeated calls from Tina insisting that, \”I\’m stuck in my ways. I\’m not moving.\”  When all you\’re trying to do is help your loved one, statements like this hit you like a ton of bricks. You think to yourself: (How dare you? Don\’t you realize we\’re just trying to keep you safe?\”)

Finally, after many prayers and soul searching, she began to realize she needed to move to a memory care facility. That feeling of peace was a gift of God, a rainbow in our tumultuous storm. Tina is a very outgoing person, so we repeatedly emphasized that a care facility would be a better environment for her than living alone. She\’d not only be safer, but she\’d have more friends, and loving caregivers and staff.

Roughly two months ago, we moved Tina to a wonderful memory care facility only a 20-minute drive from where we live. Her short-term memory has probably gotten slightly worse, but she no longer seems to have so many delusions that had her so upset in the evening. (I learned this is called Sundowner\’s.) Alzheimer\’s is similar in a way to other mental afflictions like depression, bipolar, etc., in which only the individual, not other people, understand there is something amiss going on in this person\’s brain. After all, unlike an individual who is blind or unable to walk, the Alzheimer\’s sufferer, just like someone with bipolar, seems no different than an able-bodied person.  Indeed. On many occasions, Tina seems and acts just like she always has. Highly ambulatory, happy, bubbly, full of life as she loves the many activities at the care center where she lives.But then she tells us her sister Melanie called her several weeks ago, but she says nothing about us all going out to eat for Thanksgiving. You learn to not mention it. Neither does she mention the Christmas card I sent because she doesn\’t remember getting it.In short, it has been a difficult time, but also a very rewarding, learning experience in which I am learning what it is truly like to have a loved one with a diagnosis. It\’s more than words on a page. Coping with it kicks you in the teeth some days. But it\’s not so bad on other occasions, and for those times I am truly grateful.Like any of the setbacks and difficulties we all experience in life, we can take solace that while our journeys may be rocky, God will be there to steer us through. I do well when I remember that. And I hope Tina does, too.

Mike Jacquart belongs to a Fresh Hope support group and the author of “Climbing out of Darkness: A Personal Journey into Mental Wellness.” A retired magazine editor, he enjoys sharing his story of “pushing through” on blog posts, podcasts, and other presentations. For more information, contact him at michaeljacquart8@gmail.com