Guilt. If you are taking care of someone with dementia, you know this feeling well. It’s like a really annoying neighbor who keeps knocking on your door at inopportune times. When your mind is actually calm, and when you are resting.
KNOCK KNOCK KNOCK. “Hey! Shouldn’t you be with your Mom right now? Why didn’t you stay longer that last visit? Why did you snap at her…you know she can’t help repeating things!”
And that damn neighbor won’t move out. Even after your loved one dies.
My Mom lived with Lewy Body Dementia for four years. She started losing herself at the young age of 61. I was a good daughter, everyone said, for leaving my job in San Diego, and moving back East to care for her. I was selfless, they said. No, she was selfless her entire life, I was just doing what she did for years. She was my best friend and I didn’t want her to be alone on this journey.
She moved into an Assisted Living home, (personal family decision many of us face) because her doctor said she could no longer live in a two story home and could no longer drive. I was there every day. Until I could no longer go every day. Guilt. It was really painful. I was emotionally drained. I needed to breathe. So I skipped a day here and there to re-charge. I learned later that caregivers need to do this to survive. If you don’t take care of yourself, you won’t be a good caregiver for your loved one.
I also needed to make money again, to live. When I started freelancing, I didn’t visit Mom as often. She wasn’t alone, her sisters, her father and her friends visited almost every day. I called every day. When I was there I tried to make it a good visit, by taking her out to lunch or shopping. Sometimes we would just sit and talk in the garden of the home.
One day, after being there for four hours, I said I had to go. She walked me to the door, was visibly sad and said “I wish you could stay longer.” Guilt. Some then, but more now that she’s gone. Why didn’t I stay? Why didn’t I sleep over? On blankets, on the floor? Because I was already so sad about what was happening to her, I didn’t think I could handle it. I am sorry I didn’t stay that night. What I wouldn’t give for a slumber party with my Mom, even if she woke up in the middle of the night and didn’t remember who I was.
Later, when she was in a nursing home (again, a personal family decision), because she could no longer feed herself, and was in a wheelchair, I visited every day. In part, to make sure she was being taken care of properly, and to let her know by my presence, that she wasn’t alone in this latter part of the journey. That was, until I could no longer go every day.
“I see you were here a few days ago Kristen,” a nurse said to me. “How did you know?” I asked. “Your mascara stain was on her pillow.” There was a lot of crying. There was a lot of guilt. How I wish I could have done something to prevent this from happening to her. But of course, I could not. Dementia makes the choice. You do not.
Mom has been gone for a year and a half now. I was with her when she passed. But that neighbor did not move out. I feel guilty for not doing more, for not being by her side every minute, for not getting there in time for her morning wash up every day, even though I knew she was more comfortable when I cleaned her. I feel guilty that I didn’t think to buy her a new pillow when I saw hers was flat. I feel guilty about leaving because I really wanted to go to dinner with a friend and not be sad.
When does the guilt go away? I asked a friend who lost his Dad to Alzheimer’s a few years before Mom passed. His answer, “Never. You always think you could have done more.”
But the truth is, we do all we can as caregivers. We give love, we work very hard to make sure they are taken care of, and not lonely, and not scared as this disease literally takes their mind away. We have to try to remember that our parents, especially, always wanted the best for us. Even though that thought may not have been able to form in their confused brain and make it to their lips so they could tell us. They wanted us to be ok, too. We have to forgive ourselves.
Once in a while, you get a message, a sign that you did a good job. Mine came today. Right before I opened my eyes this morning, my Mom said to me in a dream, clear as day, “I’ll always be your best friend. I’ll never go away…”
That annoying neighbor Guilt? I’m about to go over there and help him pack up his stuff.