Where Has My Dad Gone?

Posted by Candace Cable in Life After Paralysis on January 11, 2018 # Health, Caregiving

I’ve heard stories of families searching for older people that have suddenly gotten up from the chair they’re sitting in, never saying a word and randomly walking right out their front door, wandering away from the home they’ve lived in for decades and getting lost because they don’t recognize the street they’re on. When I’ve heard a story like this, I sensed the fear the families had for their lost loved one but I also assumed a kind of outraged at the family for not paying attention.

I thought how can this happen, their parent or Grandparent stray away from the home like that, why isn’t someone watching them, the story reported the person had Dementia? Well, I now know how the families felt when their loved one just wandered away and I’m deeply sorry for my miss placed outrage at them. For years I’ve taught understanding disability courses where I repeatedly urge my students not to make assumptions about people with disabilities and here I was assuming something. It just goes to show we never know the whole story and we have to stay conscious of our unconscious bias at all times.

Over this past holiday, I traveled to visit my Dad and his wife, with a personal agenda beyond spending quality family time with them. I believe, as does everyone in our family, he has Alzheimer’s but he hasn’t been diagnosed and he needs this because he and his wife need more support. His wife has taken on the role of the sole caregiver and both families can tell that she’s worn out. A Stanford University study on caregivers of people with Dementia states that 40% of the caregivers die before the person they’re caring for because of the all-encompassing stress they experienced. She’s also so very close 24/7 that she can’t envision that there’s a risk of something can go terribly amiss.

We’ve encouraged his wife to get Dad evaluated for Alzheimer’s, but that hasn’t happened yet, so I did two things hoping for some new perspectives for all of us while I visiting. I gave his wife a chance to visit with her family, alone, for a few days to get some much needed respite and hopefully some new perspective. I then stayed at their home, alone with my Dad for those few days making detailed observations. What I learned confirmed my suspicion of the presence of Alzheimer’s and blew my mind about the possibilities.

Dementia and Alzheimer’s are incorrectly used interchangeably. The National Institute on Aging (NIA), states that “Dementia is a brain disorder that affects communication and performance of daily activities and Alzheimer’s disease is a form of dementia that specifically affects parts of the brain that control thought, memory and language.” Huntington’s Disease, Parkinson’s disease, Creutzfeldt-Jakob disease and Alzheimer’s are a form of Dementia because they have Dementia symptoms. Dementia is not a disease, it's become an ‘umbrella’ term for symptoms that include memory, skill, judgment and physical ability loss.

What I observed of my Dad is he can fluctuate between being clear on how to do a task he’s done daily for most his 86 years, for example, one morning he got up a few minutes before me and he had made the coffee (to my surprise and his wife when I told her). Then contrast to the next morning he couldn’t remember any of the steps to making the coffee, so I slowly talked him through each step. I said slowly because throughout the day he would become instantly frustrated and angry if he couldn’t remember how to do a common task or recall a memory.

Besides moving from lucid to confused moment by moment, he would ask over and over who’s house we were in or he would think we were in the house that I grew up in, one he hasn’t lived in over 35 years. Dad could be like a 2-year-old throwing a quick angry tantrum, with “no” or “I don’t know” when I asked something of him.

Early on the first day together, I went to the bathroom, came out and he was gone, nowhere in sight and no answer as I called out his name. As I was preparing to go outside to look for him, he came in the back door and this is how I discovered he wanders around a lot. It felt like he was looking for something and couldn’t remember what it was. After that, I watched and studied him like a hawk watches potential prey and discovered he can’t see distance very well.

When someone in your care disappears the emotions are bigger than just fear, it’s terror. The emotional gambit of confusion, anger, love, frustration, hope, helplessness turn to defeating thoughts of not knowing what is driving my lost loved one to walk out that door, wishing I was a mind reader. It’s all at once, enormously humbling and mortifying.

I don’t how much longer my Dad will be with us, as he has a terminal cancer diagnosis that is untreatable and progressing. But I do know I want the days he has left to be safe, comfortable and as happy as can be. I do understand how one could hope this condition would just go away like a common cold. But I can’t do that so I’m pushing to get his eyes checked for glasses and evaluated for what form of Dementia he has it’s critical for his and his family’s wellbeing.

More to come as I learn more about my Dad’s aging and if any of you have suggestions or stories you’d like to share, please do, I will be ever so grateful.

Blessings to All, In Joy,

Candace