View from the last bus ride

This final bus ride toward oblivion is turning out a bit different than I anticipated.

It’s a mixture of the ordinary, the extraordinary and the weird.

My aging parents (Mother is 85, Father is 78) have downsized their life from single-family house to an apartment in a retirement community. Until shortly before they moved my mother was the one who used to do all the cooking. Now thanks to a case of Progressive Supranuclear Palsy she cannot even fry an egg. So it is my father, who has been catered to all his life, that now makes them breakfast and lunch. Their retirement community, Riderwood, provides a gratis dinner in their dining room. Arguably Riderwood provides better dinners than they would have if my mother could still cook. My mother was no slouch in the cooking department. But Riderwood has professional chefs. As I discovered last night they even come out among the patrons and ask about the quality of the food. Their meals are more nutritious, often tastier and lower in fat, salt and cholesterol than anything my mother would have made a few years ago. I am pretty amazed that my mother, who is very much a picky eater, is so enthusiastic about their dinners. At this stage of life I had visions of them getting Meals on Wheels, not dining extraordinarily well every night in a serving room with menus, waiters and linens.

Gone are my mother’s fixations with gardens, kitchens, crossword puzzles and game shows. Gone is her ability to use a keyboard or even to comprehend a paragraph. One habit still remains: Jeopardy. The highlight of her day is the complementary evening dinner. Otherwise her day is a lot like her nights: spending a lot of time in bed not sleeping, ingesting large quantities of pills and vitamins, frequently shuffling to and from the bathroom in her walker and getting to and from doctors appointments. She can use a telephone but only with the speaker feature turned on. It is difficult to sign her name or dial a telephone number. Yet she fights her disabilities with perhaps a na├»ve optimism. Certainly going to the fitness center every day helps her extend her life but if her diagnosis is correct her condition is progressive and irreversible. She both fights for life and wishes it were over.

She is also increasingly confused and worried. She is simply not thinking like she used to. She is most like herself in the morning when she is reasonably rested. As the day progresses her behavior gets weirder and occasionally seems bizarre. Yesterday her hearing aids failed but she never told us, just said she wasn’t hearing very well. We take her on occasional rides to the real world. But trips in a car can be logistically challenging. It is much like traveling with a baby. Two hours is her maximum limit before she needs to return home. A trip to Michaels yesterday was likely her big adventure of the week. On Sundays she and my Dad will often get into the car and get coffee from McDonalds. She’d love to do things like travel again. A trip to an audiologist in Baltimore is as adventurous as she is likely to get in her travels from now on.

As for my father, being six years younger than his wife he still seems relatively vigorous. But appearances are deceiving. This week their fragile deck of cards collapsed. My Dad woke up on Tuesday to discover he had an incarcerated inguinal hernia. That meant quick surgery to fix it, which happened the following day. It was outpatient surgery and he is in good spirits, but he is not allowed to support any weight with his abdomen. It was my wife Terri who actually took him to and from the hospital. My sister Mary stayed and cared for my mother in their apartment. Since then in order to care for my mother it has meant someone has had to be there day and night. My sister Mary is performing most of the heroics by basically staying there every night and during the days during the weekend. My unemployed wife helps out during the weekdays when she can. I spent some hours over there yesterday too, since I had the day off.

It’s a weird world. Caring for my father is not the issue. It’s caring for my mother. She is unsteady enough so that every trip in her walker must be carefully monitored. Most of the time she cannot even get into her walker unassisted. So even trips to the bathroom are fraught with potential peril. But being in decline has some unexpected advantages. For example she is now enjoying being fussed over. For all her whining about what she cannot do, she seems to like all the personal attention. But she cannot simply lay down in bed. The blankets and pillow have to arranged just so. It requires a level of attention and care that I found exhausting for just the six hours I provided it yesterday. That my father can do this day in and day out with few respites strikes me as an act deserving of sainthood.

My mother may be pretty much an invalid, but that doesn’t mean her personality is that different. She resents being taken care of by my father but at the same time expects prompt attention. She can get very upset when it doesn’t happen on her short timeframe. In fact she wants everything ordered so she cannot get upset. She wants zero uncertainty in her chaotic life. Yesterday my father took a short walk while she was lying down. He didn’t tell her but he did let me know. She arose when he was gone and quickly panicked. I tried to explain that he was okay with walking, he just wasn’t allowed to pick up anything. It didn’t penetrate. “I cannot sleep until he gets safely back! It’s so unlike him!” she said. Right Mom. Well, even if he were safely back you probably wouldn’t sleep anyhow. Poor dear!

Their precarious situation is largely left unspoken. Until my father can resume his caretaker duties we are jury-rigging an ad-hoc process to keep their system going. My sister Mary performs heroic 24/7 care while neglecting her own work and family. My wife and I get over there when our schedule allows. My father, generally the type to have everything planned to perfection, can’t seem to investigate nursing homes or start getting in-home care.

So it is the best of times under the circumstances yet with my mother’s progressive condition it often feels like the worst of times too. Their retirement community provides the benefits of a daily meal, neighbors, stimulation and many conveniences. And yet my mother’s body and mind continue to slip, sometimes slowly, sometimes in large steps, toward total dysfunction. Yet it seems like this wheel will never stop.

One response to “View from the last bus ride”

  1. I just emailed you about your Feb 2004 note on Riderwood, before I found your April 16 message of this year. I understand fully the difficulties and also know that there are no words I could say to be truly helpful. I wish the best for your family.


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