Please No

I positioned my Dad’s wheelchair facing my Mother’s wheelchair so that they “overlapped” a bit which allowed them to hold hands.

This cannot be the day. When the phone rang I was in the middle of setting my Mom up to eat her lunch in the dining room of the retirement community. She was having moments of severe depression blended with periods of confusion. The morning was a challenge, emotionally, as I did my best to stay strong for her. I remember she said, “I just need to cry really hard but I can’t.” As a daughter who likes to fix things this dropped me to my knees, silent acknowledgement that I could not fix this. I quickly scanned 53 years of life to find any clip of my Mother crying. I don’t remember any. Maybe one time. The point is I realized that my Mother trained herself to cry only while alone. Now that she is living in her own home with twenty-four hour care she is never alone. She does not release the tears. This is such a shame and today is a day when tears will become completely appropriate.

The caller was a nurse who manages my Father’s care in the assisted living unit of the community. In a very calm tone he explained that my Father had a choking event during his lunch. Thankfully he was able to recover. This is not new, the choking part of the story. There have been times in the past when Dad choked during a meal, but always due to liquids. When liquids become difficult to manage for the elderly, patients are put on a series of ever increasing thickeners. (1) My Dad is currently on number two of three or so I believed. I learned during the call that they just recently increased it to stage three of three.

It doesn’t matter. Today Dad was choking on his pureed food. After the choking resolved (they mentioned that he even turned blue) they discontinued feeding him his meal. This tell tale sign of choking, difficulty swallowing and the like are normal in the late-stage (2) of Alzheimer’s Disease. So living as a caregiver to someone with Alzheimer’s, this did not come as a shock. In fact, I often thought of this moment as some marker far off in the future. I knew that when we got to the place where Dad was unable to eat, it would mean that we begin preparing our goodbyes, discussing hospice care and the end.

When I finished the call, I was able to put my emotions on hold. I turned my attention back to Mom. As soon as my Mother took her last swallow of Key Lime Pie, I swiftly spun her wheelchair away from the dining table and ran to my Dad. It was apparent that my hunch was accurate. When my Mother and I arrived in the unit, we were met by the nurse who had been on the phone just moments before. He ushered us into a room out of the commotion of the entrance to the unit and away from the other patients and staff members. He was joined by the Director of Nursing. I positioned my Dad’s wheelchair facing my Mother’s wheelchair so that they “overlapped” a bit which allowed them to hold hands.

I started the conversation with my questions, consciously taking full responsibility for those things of which my Mother is no longer capable. “When Alzheimer’s patients arrive at this point and a feeding tube is not an option, then will you just continue attempts to feed him? Are we at the point where he is now not physiologically capable of eating? This is normal right? I mean this is how it ends right?” As those words fell from my lips I looked up directly into my Father’s eyes and began to cry. His facial expression changed and he looked at me and mumbled something I could not understand, but I knew he was in distress seeing me crumble into such a state. He seemed to understand. I heard my Mother’s voice saying, “It’s okay Julie, you can go ahead and cry.” I felt the irony in those words coming from her.

There were no concrete answers or explanations. Any new information would need to wait until the speech therapist and my Father’s doctor meet to review next steps. You see, I know that my Father will die, my Mother as well. I believed that if we could keep Dad eating then all would be okay. And so today it is not okay. We have been practicing good-byes for years now. Every time I leave my parents I lock eyes with them, I kiss their cheeks, I tell them I love them so much and that I am grateful. If they go today, there is no doubt that we all have an understanding, and that is, we are very much in love with one another and that our love runs deep. What I cannot “stomach” is that my Father will be hungry. Will he recognize the pain as hunger? This man who loved food so intensely. This man who managed his way around his dinner plate with such precise movements and a measured process. Will that sadness and distress I saw today grow ever stronger? Will he still smile when we greet him? As my Dad would say in jest so many times, “How do it know?” This brings a smile to my face because my Father was a grammatical genius and that question is so wrong and doesn’t even make sense - and so it is very funny to me.

And so as many before me well know, this marks the beginning of the end. The more certain start to conversations of hospice care and judgements on when the other children in other states should plan to be home to catch the last available exchanges with Dad before he can no longer sustain life. As if this is not difficult enough on it’s own, there is a very good chance that my parents, on a soul - to - soul level, have an agreement to leave together. I mean how could one exist without the other on this Earthly plane? It seems utterly impossible.

I hope for those of my friends who have parents who are younger, active and fully independent that you will visit your folks, look them in the eyes, declare all of those things on your heart. And then, if you would for me, I hope you can dance with your Father just once in honor of the man I love and the bond that we share.

References:

1. https://www.nutrition.va.gov/docs/UpdatedPatientEd/SafeSwallowing.pdf

2. http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp