My grandma will always be my grandma; but Alzheimer’s is a heck of a disease. I am writing this, not as a nursing student, but as a caregiver– one whose family has been slowly losing their loved one over the last 10 years. As nurses, we must always remember that no matter how frustrating our patients might be, they are still people that can be reached and that deserve dignity.
Over the years, I have seen 3 of my four grandparents pass away. The first of lung cancer, the second of COPD, and the third of a stroke. Of the pain and sadness these losses caused, my grandma with Alzheimer’s, by far, scares me the most.
It started about 10 years ago and it started small. The occasional repeat-ed question here, putting things in the microwave for too long there. As a family, we didn’t know any better. We thought it was normal forgetfulness. Looking back there were so many clues that we should have seen but when it’s so slow, and small, you just don’t. You see, my grandma, though forgetful, was very strong.
She walked miles per day while my grandpa sat at home, worrying about whether she would find her way home. But he was more afraid about what would happen if the rest of the family became aware about how bad it had gotten.
After my grandpa, her primary caregiver, passed away she moved in with my parents and the true severity of her disease became apparent.
As time went on, like a tank with a leak, my grandma started to disappear. She would forget where she was, say she wanted to go home while at home, and think she had been on vacation when she hadn’t. (At least if she couldn’t remember where she was, she could think she had been for a lovely trip). You could see the spark in her eyes fade and with it so did she. Her time with my parents was taxing. She would wake and pack up thinking that she had to go home. My parents were sleep deprived from waking to coax her back to bed. She would need constant reminding that my grandpa wasn’t around anymore and she would have tantrums like a toddler when we couldn’t give her the freedom she wanted.
All the stress aside, she would smile, sing along to show tunes, insist on doing the dishes and helping with cleaning so that my mom could rest (even when it would all have to be redone after words). At times the spark would return. It’s for this reason that my family will never regret the time that we spent with her.
Now, she’s in assisted living. People can only do so much before safety becomes an issue. It was one of the hardest decisions my mom ever had to make. It is still hard. We constant-ly worry if the nurses are talking to her. Are they reminding her where she is? Are they telling her that we will come and visit? That it has only been 1 day since she’s seen us even though it may feel like years to her? Even after half a year at her new home, it is hard not to break down when I picture her scared, thinking that we have forgotten
and abandoned her.
We still visit often. We take her swimming, shopping, to church and out for dinner. We keep her chocolate supply plentiful since although she denies it, she loves her sweets and we provided a TV with old musicals for the nurses to play for her when she is restless. We try to bring out the spark as much as we can, knowing that as time goes on it will be there less. Her smile will be empty and her eyes confused. But as family, as care-givers, all we can do is keep trying to bring it back because deep down, she will be there and even if she doesn’t remember our visits, while we were there she was happy.
I’m not writing this to make everyone sad. Just as a call to you to never forget, despite the frustration, the repeated questions, the resistance and the confusion, there is a person there. They love and are loved. Do not stop trying to locate the person within. Please be patient.