I stumbled onto this page while doing my research for my own grandmother. Thank you for sharing and I really appreciate your insights. Your story is becoming more familiar to my own experience and I can't help but relate to it.
The General. That’s what we used to call my grandmother. Even though Grandpa was the one who retired from the army as a Lieutenant Colonel, we all knew who gave the marching orders on their farm, from managing the yearly harvest to coordinating the new house construction. God help you if you crossed her or if you slacked off in your chores; one look from her was enough to make you jump on your feet and do whatever she asked. At 5-foot-4 with curly hair and piercing hazel eyes, Grandma was the boss.
But things started to change right around her 84th birthday. She started to forget both people and places. She had always been a temperamental woman, but now a streak of aggression was emerging, and it was often focused on those closest to her. She started to lash out, both verbally and physically. We observed her increasing inability to perform tasks she used to do her entire life: cooking, shopping, tending the garden. Then came hallucinations and general confusion: One night, she mistook my grandfather for a burglar and locked him out of the house.
After examinations by her general physician and a neurologist, the diagnosis was heartbreaking, even if not entirely surprising: dementia, most likely caused by Alzheimer’s disease. Dementia is not a disease in itself, but rather a series of symptoms that could have many causes, from something as simple as a reaction to a medication to brain damage caused by problems with the cardiovascular system. Dementia symptoms vary, but as we went down the list, we found we could check off almost every box for Grandma: memory loss, personality changes, inability to reason, inappropriate behavior, hallucinations, difficulty communicating, and more.
At the time, I was living half a world away from my grandparents, and I couldn’t conceptualize what this really meant—what dementia actually looked like, and specifically, what it looked like in my grandmother. In turn, it became far too easy to deny that anything was really that different. Grandma and I would talk on the phone and she would seem fine, asking me about my health and my work, and without fail (and to my general chagrin), bringing up her absolutely favorite questions: Did I have a boyfriend? When was I going to get married? Grandma is fine, I thought, she’s just getting old. And when you get old, you slow down a bit. That’s all.
My bubble of denial was promptly shattered when I traveled to visit her and Grandpa in their remote village in Serbia this past summer. Everything was different. The General was replaced by a quiet, confused woman who spent most of her time seemingly lost, both in her thoughts and in her surroundings. She couldn’t do simple things without being reminded by her caregiver, my aunt, or me. Like eating. Like drinking. Like going to the bathroom. She couldn’t remember her last sentence—or even her last action. She would feel tired and go to take a nap, only to get up 10 minutes later, and then, forgetting what had just happened, want to nap again.
And beyond my grandmother’s physical needs, there were the psychological challenges. Our conversations time-traveled a lot: At times we were back in the 1930s in her parents’ home, then we would discuss the garden planting schedule in the late 1990s, and then we were back in the 1960s, when her children were teenagers. She would call me by her daughter’s name.
Perhaps I was simply projecting my own fears onto her, but I couldn’t help but wonder how scared she might have been at those moments when, thinking she was a little girl of 10 or 12, she looked around and found herself in what she thought was a stranger’s home. I don’t know if that’s how her mind worked exactly, but I could see glimpses of anxiety in her eyes in such moments. I would try to reassure her, telling her that “Mom was coming soon,” and she would calm down, holding onto my hand in this strange, foreign, grown-up world.
Sometimes, she was actually in the moment. She would ask me who I was, and I would tell her (yet again), and the biggest smile of recognition would come over her face. Her eyes would carry a special spark, she would reach for me and call me by my nickname, and I knew in that moment that she was there with me.
But such moments were rare. And they will become rarer still.
I returned home feeling completely at a loss. What could I do? I started reaching for some sort of lifesaver to keep me afloat in my sea of frustration. Maybe if I found her a better doctor. Or some new medicine. Or maybe a different daily routine. Or more exercise. Or less exercise. Or food higher in certain vitamins or minerals. Or something.
I soon realized my thoughts were futile. While some forms of dementia may be treatable and reversible, my grandmother’s is not. I can’t stop it. I can’t even slow it down. I can’t do much more for her than my family, her caregiver, and her doctors are already doing.
But I also realized that there’s something I can do. After all, dementia is not only difficult on the person who has it, it can also be incredibly taxing on those taking care of that person. While I might not be able to help Grandma, I can help those who are taking care of her.
I set out to learn more, and I was relieved to find such a wide range of resources out there. After reading through them, I felt more empowered and less alone, and I understood much more, not only about dementia, but about how my family can take better care of ourselves during this difficult time.
If you are dealing with dementia in your own family, I hope they help you just as much.
- The Alzheimer’s Association has an extensive website geared toward caregivers that offers advice on anything from how to cope and react to dementia patient’s behavior to how to look out for their own health. I found the information on improving communications with a dementia patient especially helpful—many of the approaches were very effective in communications with my grandma. For example, she became far more responsive once I started using simpler, shorter sentences, and turning questions into answers (“Let’s eat” instead of “What do you think about grabbing some dinner soon?”).
- The National Institute on Aging, a part of the National Institutes of Health, has a free caregiver handbook that “addresses all aspects of care, from bathing and eating to visiting the doctor and getting respite care,” in this case, particularly for persons suffering from Alzheimer’s Disease. The handbook goes into great detail of practical advice—like what to do when the person with Alzheimer’s has difficulty walking on different floor surfaces, or has trouble falling asleep (both issues we struggled with when taking care of Grandma).
- The Family Caregiver Alliance has a very helpful page on dealing with the emotions of caregiving and managing the frustrations that come along with that job—a job that is much more difficult, consuming, and draining than is easy to admit. It offers tips to help caregivers recognize their own needs and limitations and take better care of themselves. More than the other sites, this online resource focuses on the psychological health of the caregivers, and reminds them to take time for themselves and seek support when they need it.
Of course, no matter how well informed we are on the issue of dementia, there will still be difficult days, times when everything seems to go wrong, and we’re left wondering what we could do differently to improve the situation.
But, all we can do is our best. As for me, I will read, I will ask, I will talk, I will listen. I will send these and many other links to my family members, and I will be patient with myself and others. When Grandma has an extraordinarily bad day, I will call my aunt or my grandma’s caregiver, and ask them how they are doing—and whether there’s anything I might be able to do for them.
And at the end of the day, I will pick up the phone and ask for Grandma. I will speak slowly and use simple and short words and sentences. I will tell her my name no matter how many times she asks. I will wait through the silence.
And if she asks me whether I have a boyfriend, and when I’m finally getting married? Instead of getting annoyed, I will just smile. Because, at least for the moment, she remembers it’s me.