There was a piece of me that resided in guilt. No matter how I tried to justify myself, I came away with the same burdensome weight. I think I understand this so I’ll try and explain. Mom was diagnosed with dementia about three years ago. It was not a good time – it never is. She’d call me in tears telling me all that my sister and brother-in-law were accusing her of. Then I’d get a phone call about mom getting lost by driving south instead of north or putting metal in the microwave, or leaving the stove on for hours.
Mom sure could talk up a believable story back then. Her coping mechanisms are still pretty sharp until she starts waxing eloquent about life “back then” and all her past gets scrunched up. So, I believed her (notice this is past tense). I believed her because I never saw what my sister saw. I never really did my research. I never took the time so spend enough time with her to see the deterioration that was slowly taking our mother away.
Could we have done something to at least slow this down? My sister deserves all the credit for how well mom is doing presently. She invested so much time and effort to make mom comfortable, but we still have to live so we all had to work. My portion came through a guilt trip and now that I see mom 24 hours a day, 7 days a week, I wonder what would have happened if we instituted some of what we are doing now earlier.
This condition is disarming. Mom is disarming. You can ask her how she likes her food and she will say delicious every time. You ask her how she is doing and she is fine all the time. She can look up from her plate and say that she will change her diet to include some of the things we are eating. Her favorite thing to ask for is the recipe. Folks, she has not cooked in years nor can she plan a meal or understand when mealtime is.
So, the guilt was like a trailer being pulled by a locomotive. The train lead us down familiar tracks, but more often than not, we were on new ground almost daily. I’d chase after the train scrambling to look up what the new ground meant. How come she couldn’t tell some colors apart? How come she couldn’t smell (this is bad when something is burning!)? How come she was never hungry, tired or sleepy? How come she could snap back with a retort and mumble about all the injustice I am dishing out but she couldn’t sort out whether it was morning or evening.
One day, I had to tell her that we could not use her debit card for a couple of days. She obsessed about that until she simply cut it up. Just yesterday, she was studying her arm and laughed. “Look!”, she told me after I asked her what was funny. “I can see my vein when my arm is down and it goes away when my arm is up!” Oh mom!
She’ll probably get to heaven before I do and I know the first thing she will tell me after she exclaims, “Thank God you made it!” will be why, how, and when. Why her. How did it happen and how the condition worked. And finally, when – when God showed her what happened during her time with dementia, could she see how much we loved her, cared for her, and missed her? She’ll say yes, especially after you let go of the guilt.