Mom is in the hospital today for the fourth time in less than two weeks. Her Alzheimer’s disease is progressing and, at 86, she is just going downhill. Yesterday, she crawled to the door and yelled for the neighbors to help her. She screamed, “I am dying! Help me! Get my daughter, ShaUna!” Dad called me and said that he told Mom he was not going to call an ambulance because she got out of the hospital the day before. I told him to call an ambulance and I would be right there.
When we got to the hospital, Mom was in a-fib; she had a heart rate of 65-135. Her heart was jumping up and down. She is in stable condition now, and calm. But the world around us, and the world for all other caregivers and their families, is not. Caregiving for most is a feeling of ‘when will the next shoe drop!’ The anxiety is unbearable.
My dad is at end-stage COPD. He is frail and can no longer stand for long periods of time, as his back is killing him (he broke it a few years ago). I have tried for over five years to get them to go to an assisted living facility. I not so affectionately call Dad ‘my elephant in the room.’ I can’t move him, I can’t convince him to go and, as the caregiver, I am so burned out I can barely function. The hospital wants Mom to go to a facility for at least 15 days. They will begin the process of trying to convince my dad that she needs to stay in a facility, as her needs far outweigh his and my ability to care for her.
My parents never helped their parents when their parents got older. I don’t say this to insult them. Many of our elderly parents never helped their parents, as their parents died at younger ages. My parents’ parents where cared for by the unfortunate siblings that they were given to. No help from other siblings was provided. This was often the case then and is often the case in the modern world we live in now. My parents, and many other parents, expect their children to do what they themselves refused to do—quit their jobs and take total care of them.
Mom wants Dad to go with her to live in a facility. He refuses. He does not want to go to a facility, and he does not want Mom to go, either. He does not want to go on Medicaid. I don’t blame him, but Dad’s and Mom’s and my quality of life is nonexistent. There are many options our office can help provide them. They want to stay in their own home, so I am trying to convince “the elephant” to get Medicaid in the home. He refuses. So, what do we do?
I have so much information in the Office on Aging to help them make good decisions. It is all available for free from our office, and to the public. The case manager at the hospital hopes to talk with my parents and explain that this situation has to change. All of us know that kids, when they’re young, won’t listen to their parents. And I have found—and the hundreds of other caregivers I work with have found—that your elderly parents won’t listen to their children, either. What goes around comes around!
Dr. Einstein stated that “insanity is doing the same thing over and over and expecting a different result.” I have tried for years to help, and I feel, as many caregivers do, that I failed miserably each time.
Mom and Dad are very dignified people, going through a very undignified situation. They have been loving and wonderful parents to me and my siblings. Old age strips us of so much. I can safely say I have never been as depressed as I am now—depressed for them and myself. I will do my best to comfort them during this time. It is the best we can do.
There is a poem I have always loved by Mary Carolyn Davies. It is about regrets and I want to share it with all my caregivers and soon-to-be caregivers:
If I Had Known
If I had known what trouble you were bearing…
What griefs were in the silence of your face…
I would have been more gentle and more caring…
And tried to give you gladness for a space…
If I had known.
If I had known what thoughts despairing drew you…
Why do we never understand?
I would have lent a little friendship to you…
And slipped my hand within your lonely hand…
And made your stay more pleasant in the land.
If I had known.
—Mary Carolyn Davies