Five weeks ago my 85-year-old mother could still get around. It was true that she often needed assistance. About half the time she could raise herself into her walker. Yes, she was a bit awkward shuffling forward or turning in her walker. But once started she could generally push herself forward. When she sat she was more likely to plop into her chair than brace her fall. But arguably she was mobile. She had some vestige of independence.
Five weeks ago she could also feed herself without much problem. Although her hands shook from time to time a drug made her tremors manageable.
Five weeks ago my mother lived in her own apartment. My father tended to her and was her constant, if sometime reluctant companion, day and night, catering to her many and seemingly endless needs. She slept in her own bed. Every evening she could count on a quality dinner at the dining room in their retirement community. She would enjoy that daily cup of coffee (now decaffeinated) served to her by waiters in uniforms. The coffee was poured into real china cups. She could count on enjoying a tasty entree fresh from the kitchens of the Riderwood dining facility. She especially liked the shrimp entrees.
Five weeks later finds my mother in a nursing home. The place is called Renaissance Gardens. It is a nursing home adjacent to the retirement community. She can no longer get herself into her walker. She cannot even lie down without assistance. Almost every act requires assistance. Her condition, PSP, means it is difficult for her to move her eyes. So she can only focus on what is straight ahead of her. She can still tilt and rotate her head slowly, but doing do brings fatigue after a while. So most of the time she listens and stares blankly at whatever happens to be in front of her.
Her days consist of meals, bed rest, occasional visits from occupational therapists and physicians, a visit or two from my father or a family member, and more bed rest. Her nights are long. She claims she doesn’t sleep, at least not very much. Days and nights blend together, as they have for many years now. She can read but only with concentration, and not for long. Her hands are not agile enough to hold a book. She has no interest in television and cannot concentrate on it.
And her condition is unlikely to improve. She may visit their apartment briefly from time to time. But it is unlikely that she will ever spend another night in her own bed. Instead she will be managed. Life is and will continue to be endlessly frustrating to her. Nothing can be done on her schedule anymore. She must wait. Wait for meals. Wait for someone to take her tray. Wait to be turned. Wait to be lifted into her wheelchair. Wait to be helped to and from the bathroom. More often than not she is changed like a baby. Underpants are useless. For the rest of her life she wears Depends.
She still hears very well, as long as her hearing aid batteries are fresh. She knows where she is. Even if she were mobile she cannot escape her ward. You see you have to know the number to type on the pad by the exit door and she doesn’t know it. Nor could her wobbly fingers press them accurately. She can recall most events clearly. Her hair may be gray but she has the skin of a woman twenty years younger. Her face may sag but there are few lines on her face.
Yet she keeps receding. She is clearly mentally ill. The extent of her illness is difficult for me to gauge, but it can be hard for those of us who love her to endure it. She is told one thing and remembers another. A 2 p.m. appointment becomes 1 p.m. in her mind. A fifteen-minute wait magnifies in her mind to an hour wait. As a result she is often bitter, resentful, and generally a complete killjoy. With luck, perseverance and enough conversation she can lapse into something like the mother I used to know. But increasingly the mother I knew throughout my life is gone. I ache for the moments when she acts familiar. But three quarters of the time or more she is not the mother I knew. The face is there but her personality has been magnified. The good parts have receded. Her unpleasant aspects have been grotesquely magnified. She acts more like a child than an adult.
To those of us who know and love her, she is in some sense already dead. Dead, yet alive, yet also inexorably sliding down a slippery slope. She is moving down a vortex from which life cannot escape. Hope is gone. She recognizes the reality of her condition but cannot fully grasp its dimensions. So she is understandably angry and depressed by her reality. She talks about her own death much more frequently now. She both resents her husband and admires him. She resents that he won’t spend every waking moment by her side engaged in conversation. She resents that he won’t lift her or put her down, even though he should not at 78. She resents that he cannot make things right for her, even though things are about as right as they can get under the circumstances. But she still admires the husband and father that he was, and wonders why on the dawn of their 55th wedding anniversary the husband she thought she knew and trusted is now more like Mr. Hyde than Dr. Jekyll.
For my father is being pulled into her vortex too but so far is clinging firmly to its edge. He is doing the best he can for his wife, wishing he could do more but finding it impossible. He has limits that he must respect. He loves his wife but mourns these changes in her too. He feels confused, hurt and resentful when she lashes out at him in anger. He knows it is her mental illness that makes her do these things. But it makes most interactions with her painful. It makes him want to see her less, not more. Yet he plods forward in his marital role as best he can. Her bills get paid. He sorts through her many medical issues. My Dad is fraying a bit at the seams too. He must pull away. For the first time in his life he is seeing a therapist. We wonder how he survived so long without one.
And now he comes home to an empty and deathly quiet apartment. He makes his own meals, but not for two. But he now he has freedoms he didn’t have before, like being able to get out for regular walks. But always there is the psychic tug of his wife and her wants.
No one is at fault. Everyone is doing the best they can. And no one is happy about the situation. We wonder how long my mother will be living like this. How long before death finally overtakes her? Days? Months? Weeks? Years? Most patients with her condition live one to two years after they are committed to the nursing home. There is no way to know for sure. But considering the extent of her deterioration in just the last five weeks I suspect it will be sooner rather than later.
We recognize that we are not super humans either. My siblings and I still have our own families and commitments. We love her as much as we always have. But we cannot be there all the time. She has to cope with this unhappy phase of her life as best she can. Yet she does not seem to be in pain most of the time. Her basic needs are seen to. Her other needs are difficult if not impossible to meet.
So we grieve too. Seeing a parent decline is like watching a fatal car wreck in slow motion and in exquisite detail, except we cannot turn away from it. We feel the emotional impact of her decline. We wish we could wave a magic wand and make things better. Like my father we cannot really turn off our feelings.
In the process we wonder if we see in our mother what we too will go through in time. Despite her high quality of care it still looks like a nightmare. I find myself hoping for a sudden and quick death when my time comes. Is what my mother going through really life? Is this the “culture of life” that we claim to so highly value? Or is it just existence? Whatever it is, it seems like a horror.
So we too stand on the edge of her vortex looking down too, confident that for now we will not be sucked into it but knowing our time will come too. We look because a lifelong commitment of love between parent and child means we cannot turn away now. For myself, I move through the rest of my life seemingly normal on the surface but a changed, humbled, frustrated and sometimes scared person. I hope when my time comes I will be more graceful in my decline. I want a death like King Theoden’s on Pelennor Fields. But I suspect mine will resemble my mother’s. I’d like not to think about it but I cannot. The pain is too close, too tangible and too persistent.
My mother will not survive this but we will. Death is a natural consequence of life. The feelings we go through when we are dying are natural too. I know I won’t enjoy this time of her life. But I will survive it. Perhaps when these horrid years are behind me I will live fully again, humbled but grateful for each day of good health. I hope so.
I wish I lived in a culture that had a better attitude toward dying. I wish my mother were a devout Buddhist instead of a Catholic wondering if she’ll die with a mortal sin on her soul. I wish she could embrace the changing experience called dying. But for the moment she is not in that space. Perhaps before the end she will embrace it. And perhaps someday I will too.
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