The phone rang at 7 a.m. Its jangling didn’t wake me despite the early hour, but I was still in bed. Reaching across my husband, I pulled the receiver off the cradle and answered. On the other end of the line my mother, with a catch in her voice blurted, “I waited until I thought you’d be up. I have a horrible pain in my back and I don’t know what to do.”
Arnie tickled me and I frowned at him and shook my head. I said, “I’ll be right over to take you to the clinic, Mom.”
My mother was approaching her 99th birthday and had never before called to complain of pain. I rolled out of bed and quickly dressed. It was Valentine’s Day 2005, less than one month before Mom would pass away.
For her first 28 years of life my Mom lived half a mile down the road from the farm where I grew up. When she married Daddy, she made her one and only lifetime move. After Daddy died, the many years took their toll, but my siblings and I were able to provide the care she needed. My two bachelor brothers lived with her and helped by making meals and keeping her company. I took care of her healthcare, shopping and personal needs. Together, we were able to keep her living at home until that last hospitalization.
No one wants to live at a nursing home or some other residence facility during their final years, but what is a family to do when their loved ones need more care than they can provide? I am now facing that situation and struggling with second thoughts and feeling guilty.
My two bachelor brothers both have Parkinson’s disease, one since 1990 and the other since 2000. They have managed living without significant help until six years ago. Since then I’ve filled their pill boxes so they could take their medicines in the right amounts and at the right times. Having been given financial power of attorney, I pay bills and do a little cleaning in their house when I have time. In the past year or two, I’ve seen that their need for help is increasing to beyond what I can manage. I’m feeling increasingly out of my depth.
As a caretaker I’m doing an uneasy dance of two steps forward and two steps back. The first time one of my brothers had hallucinations, I rushed him to the doctor for treatment. As time passed the hallucinations came and went. The doctor finally said to me, “This is just the way he is going to be. He has dementia related to his Parkinson’s.” After that, the only thing that would make me take my brother to see his doctor would be if the hallucinations were very persistent and his bodily safety became an issue.
Parkinson’s makes my brothers unsteady on their feet. They fall frequently. The first time one of my brothers fell and gashed his head, I rushed him to the doctor. The Urgent Care crew casually patched him up and sent us on our way. In some of his subsequent falls I just washed the wound and covered it. Unless it gapes or becomes infected, we don’t need to visit the doctor.
Patients with Parkinson’s can suffer from hypotension. When one of my brothers stands up, especially after eating a meal, he can feel dizzy and complains that everything looks purple. His blood pressure at those times is extremely low. The first few times this happened, I rushed him to the doctor. They inserted an IV into one of his veins and gave him fluids, then sent him home when the pressure came back up. Now, when he sees purple, I give him a glass of water and tell him to drink it all. If that doesn’t work, then we see the doctor.
I was managing all of this fairly well, until my brother who had not been as affected by Parkinson’s started to have memory and vision problems. He lost his drivers license. Then I wasn’t sure if he could see well enough to call me whenever they needed help.
The things I thought I was managing all right had now become unmanageable. The pills in their pill boxes weren’t always being taken correctly. There were more falls, more episodes of low blood pressure. I questioned the safety of their using the stove, I wondered if they were eating well balanced, nutritious meals. During a recent visit, the neurologist said, “The two of you need to move to an assisted living home. Make that decision now, before it becomes an emergency.”
One brother didn’t say anything, but the other one said, “No, we can still manage living at home.”
I feel conflicted and torn. Do I believe my brother who thinks they can continue living at home or do I believe what I see each time I visit them? Despite seeing them every few days and calling frequently, I can not stop their downward spiral. My brothers don’t want to leave their home-sweet-home and I share their heartbreak.