Alzheimer’s in the Family: A Personal Story

by Advocare

For the millions of Americans who suffer from Alzheimer’s, and the millions more that are caregivers to those afflicted, there are infinite stories that affect each and every one of us deeply. Direct caregivers suffer the indignities right along with their loved ones on a daily basis. For family members who live far away, or children who are not always around the patient, the changes that have occurred with their elder and the family dynamic as a whole is distinctly noticeable. The symptoms of the disease can appear slowly, and behaviors change subtly. The following is one family’s story as they navigated through elder care and placement for their husband/father/grandfather. Many of the situations they faced can be considered typical, and may be reminiscent of your own story.

Grandpa was always sort of argumentative, wonderful loving fellow one moment, and mouthy the next. He was from a generation where “bi-polar” didn’t exist. He starved during the Depression as a child, was part of a high-casualty parachuting battalion in WWII, and worked for and retired from AT&T (Ma Bell) his whole adult life. He installed telephones back when they were “new,” and was on a team of fellows who actually installed the telephone poles from Idaho to Oregon. Exciting stuff. He loved his family (though he could hold a grudge-for years even), loved hunting quail, gardening, fishing, caning chairs, bluegrass, guitar and genealogy.

But his “grouchiness” seemed to take a turn at my wedding. He was just so-weird. He got angry when he was sitting at a table at the reception that wasn’t in the first group to head toward the buffet, and then when at the buffet he insisted on using this tiny salad plate for all of his food. Some months went by, and Grandma finally breaks down and tells us how forgetful he has been. He got mad at her and locked her out of the house for 4 hours. He only let her back in when he went out to get something, and he had totally forgotten that she was even out there or that they had argued. And for some reason, he was suddenly stockpiling ammunition. It wasn’t until he decided to take a sudden trip across the state where state police had to get involved that drastic action had to be taken by the family. At the commitment hearing we got worried-he was really smart and really good at arguing! We thought the judge wouldn’t believe us. It was 1998. The judge asked, “Who is the President of the United States?” Reply-“It’s Richard Nixon you idiot.” So that was that.

Visiting him at the first nursing home was unsettling to say the least. It was a very nice place actually. What startled me were all of these people (patients) wandering around in this sort of line. He was much calmer. He didn’t talk much at all anymore. But, not two weeks in he managed to escape the facility. One strike and you are out! He was too unpredictable for the family to care for him, so we had to find a facility that would take him. The waiting list for the Veteran Home was 1½ years. So in comes medical facility number two.

The 2nd facility was a clear example of the sad state of elder care. The facility was located in a poorer urban area. The floor that he was on was mainly elderly patients, with a couple of younger, mentally ill patients. The doctors and nurses were as kind as could be and did the best with the resources made available to them. For the year and a half that he was there, we were the ONLY visitors for anyone, ever. And either grandma, mom or myself visited every day. Everything was absolutely bare. His room was the only one with pictures. We brought in all kinds of magazines, which everyone just loved, and was so appreciative of. My musician mother came and played music everyday after work. The loneliness and monotony was just crushing. I don’t think they ever went outside. I’m sure it is the same today as when we left it. Bare, with strong smells of either incontinence or cleaning products.

The Veterans Home was the largest and most aesthetically pleasing of his 3 placements. Though again, you had a large number of patients with no visitors ever. A lot of wandering. On what would turn out to be my final visit with my 10-month-old son, one man there just lit up when he saw my baby and followed us everywhere that day. He once touched my son’s head ever so gently, and it looked as though he would nearly explode with glee. It was painful to see how joyful it made him to be in the company of visitors that weren’t there for him. I always imagined what his story could be.

Sure, there were a few incidents at the Veterans Home. I don’t know that there is anywhere that could be deemed perfect. He eventually stopped talking all together, but he was an avid reader. The doctors could not explain it. His sister sent him letters everyday, and he read the newspaper cover to cover everyday. His wife, who had always suffered the brunt of his abusive language, stood by his side to the very end. In what was one of his only brief moments of clarity, and probably the last words he ever spoke a year before his death were to her. ”I love you.” Those were words he probably hadn’t uttered to her in decades. Words that maybe made it all worth it.

He was a lucky one I suppose. He had a loving family that was able to follow up on his care. He had saved up the money his entire life to be able to afford such care. As family caregivers, we were able to come to terms with his need to be in a full time professional setting, and therefore to go home at the end of the day to care for ourselves. It was stressful and sad, but it was the best we could do when Alzheimer’s snuck up behind us. In the end there were some beautiful moments with an imperfect man who we loved to the end.

For help navigating elder care in South Florida, learn more about the Geriatric Care Managers at Advocare. Having the tough conversations and planning for the “what if’s” can be made easier with help from a care professional.

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