Occam’s Razor

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 naïve 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.

April 16th, 2005 at 03:25pm Posted by Mark | Life 2005 | one comment

The End of Life

My mother turned 85 on Thursday. Those of us who live in the area got around to actually celebrating it with my mother yesterday (Saturday). The only one who didn’t seem happy about it was my mother. “I shouldn’t be alive,” she kept telling us. I pointed out that she had beaten the odds. The average life expectancy for a woman in the United States is 80. She’s had a five-year bonus. But from her perspective there is not much to celebrate about having five more years. The last five years have been hard on her physically and mentally. And we are all realistic that it’s not going to get much better. She is alive thanks to a dedicated husband, family and generous social benefits. But from her perspective she is existing, not living.

She had periods when she improved remarkably. Her last stay in the nursing home was not a happy one. She had plenty of incentive after she was freed to work on her physical therapy. For a while she was able to get around in her walker unescorted. For a while she was able to ascend into her walker and drop back down to a chair safely. Those days are gone again. If they return they will not return for long. She requires help to do pretty much anything. She can still do a few things for herself. She can brush her hair and teeth and once in her walker she can usually use the bathroom by herself. Since she had part of her large intestine removed she is not always aware when she needs to use the bathroom. As a result she wears Depends all the time.

She is fortunate not to be in a nursing home. Every month though it seems like it takes more and more heroics to keep her out of a nursing home. My father fills in as her 24×7 nursemaid. My father, who is six years younger than her, is in reasonably good health. But it is a wearisome time for him to be constantly on call. His sleep is usually broken several times during the night by requests from my mother to shuffle off to the bathroom. That my Dad can still manage this is nothing short of heroic.

But it is not easy. Naturally Dad goes squirrelly after a while. It’s the nature of us guys not to complain about life’s burdens. And arguably my mother has been doing most of the care giving in their marriage all these years. So there is some karmic justice in my Dad’s heroic efforts now. He cleans up lots of accidents. He helps her with her showers. He drives her to many doctor’s appointments. He shuffles her off to dinner in the dining hall. He keeps their apartment clean. He doles out her medicines. Occasionally though the cracks begin to show. He needs a respite. But there are not a whole lot of volunteers to give him time off. Unless one of my siblings fly in there are three of us. There is my sister Mary in Columbia, who had been doing most of the care taking. Then there is me. And there is my wife, who is unemployed at the moment. I have been all but ruled out as anything other than a momentary caretaker. I am, after all, a male. She had a hard enough time letting her daughters help her out with intimate acts. Although I could certainly do the job competently enough there is too much of an embarrassment factor for her to let me help. So sister Mary occasionally burns some days of her leave and sends my father out to visit his sister, son or daughter.

My wife and I live thirty miles away. But many days it might as well be a hundred. Because we live in the Washington metropolitan area there is this unfortunate fact of life called traffic. To visit them we must cross the Potomac. There is really only one bridge across and it is often a bottleneck. For much of the week the Capital Beltway is in gridlock. A thirty-five minute trip can easily turn into an hour or two each way. Unless visits can be arranged to fit our schedules it is difficult to drop in as needed.

So what is left is a woman near the end of her life simply tired by life. Much of what she says about dying is her depression talking. It would be difficult for anyone not to be depressed in her circumstances. She wants to die and not be a burden on my father. She doesn’t want to be a burden on us either. When family visits she can turn her thoughts away from herself and her problems for a while. But when she talks about her feelings most of the time it is just a cry of anguish from being so immobile, layered on with guilt feelings for being a burden on all of us.

It’s like she thinks we are all hoping she will die. Nothing could be further from the truth, of course. What we want is for her to take some pleasure in life, despite her condition. What we want is for her to enjoy the moments she has left, not to obsess about the end of her life. But at 85 the end of life is no longer an abstraction. It is very real. The freight train is about to run her over. She feels its rumbling. She sees its headlight.

Arguably we her offspring are caught up in a cycle ourselves. We cannot help but love the woman who gave us birth and nurtured us through life. But we too feel some guilt that no matter how much we try to make things good for her that we cannot change her slowly crumbling body. We may perhaps delude ourselves. Does the time we spend keeping her spirits up say more about our impending separation anxiety from our mother than it does say about how we feel about our mother? Are we all playing a complex game of “let’s pretend” that my Mother sees through? Perhaps it would be simpler and she would be more relieved if instead of saying hopeful things we acknowledged the truth. She is a hurting and guilt ridden woman. Maybe it would mean more to say that we understand how sad and hurting she is feeling. Maybe it would be better to say we understand that coming to grips with the end of life is very hard. Maybe it would be better to admit that we too are scared, for we get a preview of our own old age watching her go through it. And it is not pretty.

Perhaps some honesty on her situation would improve things. But we are all playing our assigned roles. And to some extent that includes my mother. How much of the “I don’t want to be alive” is her or some guilt-ridden persona whose script she has read from much of her life is hard to tell. But we too are perhaps acting our scripts: caring son or daughter. I don’t particularly see my mother’s decline as a burden on me. But at the same time there should be no shame in admitting that my life was a lot less complex when they lived 600 miles away instead of 30.

If we live long enough we will doubtless go through what my mother is going through now. We will all have similar feelings of depression, anguish, regret and just being scared about the whole dying process. Even if we are blessed with excellent health until death happens, dying is a fact of life none of us can escape. How do we want to die? I know I don’t want to spend that much time thinking about it right now. But with my mother in her declining years I still have to think about it at midlife anyhow. I do hope when my turn comes that I can find a way to accept that time of life gracefully. I hope I can take pleasure in the day in spite of infirmities. I don’t know if a happy death is possible, but it is perhaps a final goal for which to strive.

March 13th, 2005 at 10:55am Posted by Mark | Life 2005 | one comment

Caregiver Guilt

My 84-year-old mother was released six days ago from Holy Cross Hospital. We now have a name for her condition: congestive heart failure. Basically her heart has been repeatedly damaged. Her heart can no longer pump enough blood to the body’s other organs. This causes blood returning to the heart to back up, which causes congestion of fluids in her tissues. The condition can be treated but it cannot be cured. Some medicines help to mitigate some of the symptoms. She tires easily but cannot sleep for very long.

She was released from the hospital but she did not go home. Instead she went to a nursing home in her retirement community called Renaissance Gardens. It’s a lovely place but it still feels like a hospital. She has a room to herself on the fifth floor. She goes to physical and occupational therapy in the mornings. She complains about the terrible food. She had suffered significant hearing loss so the TV holds no allure to her anymore. Her sight isn’t great either. My Dad visits her a couple times a day but mostly she is alone. She feels lonely and forgotten.

It could be worse. My sister Teri flew up all the way from Florida to spend the weekend with her. Even before the accident she’s been blessed with sons and daughters who have come to visit her in their new apartment in suburban Maryland. We’re a spread out family so it’s no minor matter for most of us to visit her. I’m sure she appreciates the time we can spend with her but it is apparently not enough. She wants companionship all the time because she is scared and lonely.

She wants to be back in her apartment. She was there for most of the day on Sunday because we took her there and could care for her. But we had to return her to the nursing home by the evening. She did not want to go back. She seemed scared that we were all leaving and going back to our normal lives. “But what will happen to me?” she kept asking us. She wanted to know what would be happening to her every hour of the day and night. She had arrived in the nursing home on a Friday afternoon. We didn’t know what her normal weekday schedule would be. But that wasn’t good enough for her. When will breakfast be delivered? When will I get my shower? When will therapy start? When will your Dad come to visit me? We did our best to get all the answers but there were lots of gaps. We even posted a schedule next to her bed. It seemed to calm her down a little. But she watches the clock carefully and gets anxious if anything happens a minute later than the scheduled time. Her underlying fear is I think that we will abandon her.

We explained if she could get back to where she was before the hospitalization that she can live at home again. But it looks like a long road. It took a week a year ago to reach that point. She has a lot less muscle mass now. She looks and is frail. I am not sure if she can reach that point. Time will tell.

Most of her conversation is naturally about her problems. It is hard for her to step outside her own life. She looks confused and scared. I hold her hand. I talk to her. I stroke her forehead. But it doesn’t seem to help much. She hates the whole nursing home business. She hates having a body that won’t do what she wants it to do. She hates not being able to do things on her schedule. She hates the waiting. She hates the loneliness. She snaps at her husband.

She is seriously depressed. She is on an antidepressant and has seen a visiting therapist. We cannot wait for the medicine to kick in but we know it is likely weeks away from having any potency. Perhaps it will help her feel better. But her underlying physical condition is unlikely to improve much. She has every reason in the world to be depressed. I would be depressed if I were in her condition.

Even if she can move back to the apartment she cannot resume independent living. In reality she hasn’t been capable of independent living for more than a year. Instead my father is her caregiver. The truth is that even before she moved that on many days she was not up to even assisted living. She could not bathe herself. She usually could not dress herself. She could not make their meals. Without my father she would either be in a nursing home or one of us would be her caregiver.

She thinks we should take care of her. She has a point. She took care of her own mother in the last years of her life. My mother’s story is a remarkable one in many ways. She tended to her mother 24 hours a day while taking care of a newborn baby, my sister Lee Ann. She had only her new husband to offer some modest relief after he came home from work. That was more than fifty years ago. My mother was the good and faithful daughter who did the dirty business with her parents that her other siblings wouldn’t. She wants to know, why shouldn’t we now do the same for her?

It is a question I have a hard time answering. It is a question that fills me with guilt. My mother not only gave me life but also cared and nurtured me into adulthood. I could respond that when she was more lucid several years ago she was adamant that when her time came that we gave our own families first priority. But she wasn’t scared then. Now she sees the reality of a nursing home. The nursing home may be clean. The staff may be competent. But they are not family. They cannot help her feel better.

And I’m not sure family can do that either. We are there trying to calm and distract her but not much works. Instead she very naturally draws us into her circle of anxiety and pain. She pushes primordial buttons of concern and guilt that also leave us anxious and enveloped in her miserable world. If we pull away it may be because we aren’t strong enough to endure it for too long.

And yes we do have our own families to take care of. And I have a family to feed and a wife to cherish. My drains still get clogged and I must still deal with the ant problem in the kitchen. And I also have this thing called a life. I enjoy surfing the web at night when I can. I enjoy blogging. I like to go out and see the occasional movie. I want to keep doing all these things, albeit not as frequently.

And yet my mother is now thirty miles away from me instead of six hundred. The psychic and real distance closes. In truth she is always on my mind. Yet I try to enjoy life. Last Saturday I enjoyed a 27-mile ride bike ride into Falls Church on the W&OD Trail. For a while anyhow I was able to clear my head. With my heart racing at over a hundred beats per minute for a couple hours I was able to revel in the feeling of being alive and healthy. But then it was over and the thoughts of my mother and her pain crowded around me again.

There is no escape from my feelings for her. We have a bond of love. All I can do is choose how deeply I want to ascend into her level of misery. I could potentially have her live in our house. I could cater to her and bring in nurse’s aides when I had to work. And that would turn me and my family turned upside down. But I could be the good son. Or I can pull back far enough so that I am not swept into her vortex. But I will always feel its pull.

For now staying at the edge of her vortex is my choice. But while I will mourn her loss when she has departed this earth I wonder if I shall berate myself for my selfish choice. I know I can choose to feel guilty or not. But the guilt is likely to cling to me regardless of my actions. It seems intrinsically woven into my nature.

There is no right or wrong way to respond to my mother. I know there are some problems that I cannot make go away, and there are some pains that no balms can soothe. These are some of those unfortunate facts of life. This is yet another strange black box both my mother and I must navigate through.

I see her again tomorrow afternoon. I am both anxious to be there for her and selfish enough on some level to wish I were not going at all. I hope it helps her and me but I am not that naive. I will just step gently into the vortex for a few hours before I pull myself very deliberately back.

September 30th, 2004 at 08:56pm Posted by Mark | Life 2004 | one comment

Moving the Parents

Last week was a week consumed by parental relocation. It was no small logistical feat to move my parents from Midland, Michigan to Silver Spring, Maryland. It would not have been quite the logistical feat it turned out to be if my mother weren’t in such bad shape. This is the biggest logistical exercise my family has ever had to face. It was also one of our most emotionally draining experiences too.

There are so many minor heroes in this act. But it was a time to be very proud of my far-flung family. I am also grateful for a sterling set of in-laws as well as my nieces and nephews. We all went the extra mile.

My father has borne the lion’s share of the work for many months. He has had to deal with major issues like selling their house and selling/giving away/donating most of his possessions, including some that are very cherished. His workbench, for example, has been a fixture in our family for all our living memory. I was going to take it but last month my wife Terri got a workbench from her office. His workbench was left behind for the new owners, but I already grieve for that which I will likely never see it again. I spent many a weekend or evening with my Dad at his workbench, watching him fix things. It was not his skill in carpentry that he imparted to me. I still seem inept in that department despite all that observation. No, I associate the workbench with quality time with my father. With seven other siblings it was hard to find time to talk with Dad by myself. But I could always find time to talk to him alone when he was at his workbench.

Now it is gone along with many other cherished objects. This is what must be done when you move from a single-family house into a two-bedroom apartment. But downsizing their life was just one of my father’s many chores. There was also my mother, who was nearly a full-time occupation by herself. She frequently had to go visit doctors, and ended up in the hospital a couple times. She was often incontinent and needed help in the middle of the night getting to the bathroom. Dad did all that and more. This is no small feat for a 77-year-old man!

Then there was my sister Teri, Mom’s spiritual coach. Before the move my Mom’s spirits were as low as they have ever been. In her last hospital visit she told me she longed for death. She wanted to be out of her misery. Teri came up for the move to keep my mother in one piece while her world changed around her. Teri fussed over her, loved her, consoled her, cheered her up and distracted her. She even flew down from Midland to Washington with them so they could navigate things like airport bathrooms between flights. And of course she steadied Mom who did not have her walker. My mother picked up a bladder infection from her last hospitalization. It was Teri who recognized the symptoms, gave her some pills she had that helped reduce the pain, and took the initiative to get her treatment at a hospital clinic near my house.

My brother in law Tom deserves a son-in-law of the year award. Tom is Teri’s husband. Tom was Mr. Move It Man. He rented a 24-foot truck and directed the meticulous packing of the truck so that everything fit tightly and nothing was damaged. That truck was filled to the brim by the end. And it was all neatly arranged so that furniture could be dropped off at various households on the route. And if directing all that loading and unloading were not enough, Tom actually drove their belongings 600 miles all alone towing their car on a hitch. And yet Tom was unflappable as always. Teri got lucky marrying that guy. Yet his role was absolutely crucial. I don’t think anyone else could have done it.

My brother Tom also played an important role. He flew out from Boulder, Colorado to spend a few days helping to box and load the truck. In the process he got to see my mother at her worst. Mission accomplished brother Tom had to return back to Colorado to resume the meteorology business.

And then there was my sister Mary. It was Mary who took the initiative to find a new and better home for my parents. She spent months looking at retirement communities in the Washington area before settling on a handful near us for my parents to consider. My parents chose Riderwood. But her role went much further. She helped them find the perfect apartment in the place. It has a northern exposure so my Mom wouldn’t have to deal with bright light. Their living room window looks down on a lovely courtyard with a fountain. There is likely no nicer view in all of Riderwood. Mary also worked through numerous logistical issues such as ordering carpet and the types of kitchen cabinets and counters they would get. Once moving day arrived of course she was there to help and patiently involving my Mom in the process. She spent hours with her just asking her where she wanted various items placed.

On move in day there were an even dozen of us altogether. My parents didn’t have to do much of anything. In addition to Mary, Teri and myself there were two brothers in law: Tom and Mary’s husband John. And there were also the grandchildren: five in total, including my 14-year-old daughter Rosie. The grandchildren were wonderful! My daughter, usually something of a fussbudget, did not fuss and all and cheerfully moved furniture up two flights of stairs. She was joined by four of her cousins, including my sister Doris’s son Vincent, daughter Cheryl, and Mary and John’s son Ryan and daughter Margo.

It was still stressful for my mother. It was a challenge to get her bed out of the truck and in place so she could lie down and rest. But we managed. They are still sorting through boxes and doubtless will for some time. But at one week they are reasonably settled in. And although their payoff has yet to come for all this work soon their lives will be simpler. They are already enjoying their gratis evening meal every night in the Riderwood dining facilities.

My mother’s spirits are better. She is still as fatigued as always, but she is moving on. She is still so obviously depressed (and won’t get treatment) but she at least has distractions. There is the evening meal and new neighbors to meet. A woman just like my Mom, a Catholic with 8 children is just across the hall. Perhaps her social isolation will end and she will discover at the end of life that life can still be good.

My parents and I are blessed with a remarkable family. There are times when I think we are an acerbic, cynical and depressing lot of people. But our hearts are full of love. We were there for our parents in their days of most pressing need. I am sure most adult children would do the same for their parents. This was just another minor miracle driven by love. It feels good to give back in some small measure the love that we received all those years.

August 18th, 2004 at 08:43pm Posted by Mark | Life 2004 | no comments

Grieving for the living

In the movie Master and Commander: The Far Side of the World there is a poignant scene. It occurs when the HMS Surprise is rounding Cape Horn, which is known for its turbulent seas. A mast breaks and falls into the sea. A sailor up in the rigging falls down into the ocean with it. He desperately tries to swim back to the ship. The mast, which is still tethered to the ship, is acting like an anchor that threatens to pull the Surprise down into the ocean. It must be cut in order to keep the Surprise from sinking. But in the process of cutting it the sailor cast overboard has to lose his life. The poignant string music of Ralph Vaughan Williams’s Fantasia on a Theme by Thomas Tallis perfectly captures the mixed feelings of the moment. We see shots of the drowning sailor (popular with the crew), sailors crying in the hull and the grim Capt. Jack Aubrey cutting away the last bits of rigging holding the mast to the boat.

I know how that crew felt. I am going through similar feelings now with my mother’s decline. It is increasingly clear that she is in or is reaching her last stages of life. She may surprise us and live for years but her spirit is gone. She is at a point where I think she welcomes death as an escape from her earthly turmoil. She is 84 and a victim of congestive heart failure. She recently returned from a hospital stay not appreciably better than when she entered. My Mom is severely depressed. She spends most of her waking hours in her room watching TV. She tries to sleep but for the most part doesn’t succeed. She is at the point where she can’t do much of anything without assistance. She used to be able to navigate to the bathroom by herself. My Dad is there to assist her for pretty much every activity in her day.

Since her fall last autumn we have been trying to get them out of Michigan. They have a perfectly nice single-family house. But it has stairs. It is not very accessible. My mother’s sister (who is weary of helping out during her emergencies) lives in town. Her closest offspring is 400 miles away. Fortunately my Dad, age 77, is doing quite well and is able to keep up with her. But we know her condition is taking a large physical and psychological toll on him. So they finally sold their house and will be moving on Monday to the Washington area. Their new residence will be a retirement community called Riderwood near Silver Spring, Maryland.

We’ve been planning their move for months. Final preparations right down to the wallpaper for their new apartment kitchen have been haggled over and decided. We even have a wheelchair rental planned for my Mom. If we can get them to Riderwood life should be simpler for them. But it will still not be easy.

If my mother’s recent hospitalization weren’t enough the move alone may kill her. She grew up in a clapboard house in Michigan less than thirty miles from where she is living. The things she cares about most are in Michigan, including what remains of her family. Michigan is comfortable and familiar. It feels like home. Always a deeply shy woman about the only people my mother can related to these days are her increasingly few siblings and her children. Taking her away from her siblings may crush what remains of her spirit. She knows their lives need to be downsized and she knows the burdens on my Dad are hard for him to bear. But she leaves Michigan in a couple days with the crushing knowledge that if she returns it will be as ashes in an urn to be placed next to the graves of her parents.

At Riderwood both my sister and I will be in commuting range. We are hopeful that her new neighbors (including a devout Catholic across the hall) will revive her spirits. Perhaps she will find even at this late stage in life some joy and something to live for. But from reports I am getting she wishes she could just die and be done with life’s burdens.

My aunt thinks she has less than a year to live. She is probably right.

We, her sons and daughters, are bending over backwards to pick up her spirits and to facilitate this move in the best way possible. My parents will be spending Monday with us. My sister Teri will fly with them to help my mother navigate airplanes and restrooms. (A car trip would be too taxing.) Then we have to move them into their apartment in Riderwood, and try to get her established in their new home. But my gut feeling is that my mother will remain miserable. Getting out of her bed and using her walker to get to the bathroom may prove too vexing for her. Her short-term future may be a Washington area nursing home, not Riderwood.

She seems trapped in some sort of inexorable death spiral. We will do our best to change the situation and her spirit. But she doesn’t appear to want to change anything. She feels hopeless. She is withering: losing body weight, losing muscle mass, becoming stooped and increasingly unable to do anything by herself. Yes, I’ve talked to her many times about depression. She has always denied she is depressed and has refused repeated offers to get therapy. However I was successful in getting my parents to get some counseling together. That seemed to have some effect, as they were able to agree they had to sell the house and move on.

Those of us who love her are of course deeply affected by her condition and her attitude. We so desperately want to make things better for our Mom. We want to see her happy and smiling again. My mother’s life is all about giving of herself. But from her perspective there is nothing for her to give anymore. Even cooking, her main joy in life is largely behind her.

I realize I am involved in a grieving process for my mother. She has not died but to some extent she is already dead. All of us want her to be like she was: happy, humming, putting together some tasty creation in the kitchen or tending to her flower garden. But that part of my mother is dead. What remains is a severely depressed woman scared witless by the impending end of her life but unable to stop this train that she is on. We offer words, we offer comfort, we offer food but not much penetrates. Perhaps listening to her will help but I am not sure she has anything she wants to say. She wants to totally withdraw.

I would like to think there is something called “the good death”. But I don’t see it happening for my mother. I suspect it doesn’t happen that way for most people. We can do as much as we possibly can for our mother but I don’t think any of it is going to penetrate. We come into this world alone, but must we elect to leave this world alone too?

We on the periphery of her life bite our nails, grieve and mourn for our mother who is still with us. As we watch her go we feel her terror. We know her issues are issues we will have to grapple with someday. For myself her experience only feeds my own fears about my dying. It seems so unfair for anyone to die. We know death is the price of living yet to watch the process with someone you love just makes me apprehensive and angry with the gods. Death should not have to be so wrenching.

Williams’s Fantasia perfectly describes how I feel: Anxious, poignant, resigned and hopeless. I am mirroring my mother’s own feelings. I try to stay busy and keep with the tasks of the day, but her dying hovers over me constantly. Now that she is moving closer it will become an even closer and more personal experience. I need to go through this experience; it too is a part of living. Yet it leaves an acrid taste in my mouth.

I am left hoping I can find the personal courage to give my mother my best in her last days. She needs to feel the love we always feel for her. Yet I know when her passing comes will be both a traumatic blow and a relief that she (and we) are free at last.

August 7th, 2004 at 03:21pm Posted by Mark | Life 2004 | one comment

The Stranger in the Mirror and the Unexpected Adult on the Stretcher

The times they are a changing.

A couple weeks back I got one of these really unwanted calls from school that you know you will get once or twice in a lifetime. There is a rule that they cannot arrive until you are frantically busy with a deadline. Our 14-year-old daughter Rosie was injured during gym class at school. Some jock hit her not once, but twice with a basketball. The first blow landed on the back of her spine. She apparently didn’t think it was enough to bother moving off her bench. The second hit the back of her head. This one made her feel dizzy and nauseous. Since these were signs of a concussion the school clinic called 911 and us. I frantically dialed my wife who was resting at home in her easy chair recovering from abdominal surgery the week before. We made plans to rush to her high school. But before we could a subsequent call said Rosie was in an ambulance on her way to Fair Oaks Hospital. Despite her condition Terri managed to drive the van and pick me up at work (I had taken the bike) and we hurried to the hospital. We ended up beating her there by a couple minutes.

I hate hospitals and I particularly hate emergency rooms. I hate the gnawing feeling in my gut when someone I love is in danger. Fortunately when we saw her on the stretcher we breathed a sigh of relief. She looked fine. In case she had a spinal or head injury she was wholly immobilized. She had to be checked out by the ER doctor who ordered multiple X-rays. We knew that she was going to be fine. But it was an odd feeling to see her there on a stretcher in her gym clothes. She was uncomfortable because she was strapped in very tightly on a very hard immobilizer board. She wanted out immediately but we couldn’t let her off.

Perhaps most striking in the couple hours she lay there was to see the adult woman I apparently had raised. This couldn’t be. This was my daughter, the same girl I had bottle fed, read to, potty trained and played endless tedious games of Barbie with. But except for the acne she looked very much like a woman. She is already taller than her mother. She is likely to add a few more inches before she stops growing. I held her hand when she would let me but that stage seemed very much over. I offered empathy and found her a snack from a vending machine in the lobby. That’s about all the nurturing we dads are allowed to do for fourteen-year-old daughters. Our role at this age is pretty cut and dry. We show up when they appear in plays or recitals. We give lectures about grades and completing homework. We ferry them from party to party and sleepover to sleepover. We try not to give too much offense and give them plenty of personal space.

Still it took my breath away to think that in so short a time, a mere fourteen years or so she had gone from a fertilized egg to someone nearly as large as I am and on the cusp of independent living. As Tevye laments in Fiddler on the Roof: “When did she get to be a beauty? When did he grow to be so tall? I don’t remember growing older. When did they?” After several hours she was released. We retrieved her stuff from school. At home she made herself an overdue PBJ. She seemed back to her old self, but I she was no longer the child in my mind’s eye. She was an adult. And I felt very much like I was in a time warp.

It was a week later at a hotel in North Carolina. I woke up alone and staggered toward the sink for a glass of water. I needed it to drown out the acrid taste of dead bacteria in my mouth. I happened to look into the mirror and I was shocked. My father was staring back at me. But it couldn’t have been him … that person somehow must be me! Overnight I had arrived at middle age. And I was looking so much like my father, sans the gray hair perhaps. But mostly I saw him, right down to the long bony English nose. I was depressed for the rest of the day. Eventually after a long day at my conference, a long run, a hair wash and a fresh set of clothes I gingerly approached the mirror again to see if my father was still there. And he was still there. But I was also there too.

I don’t remember becoming middle aged. Someone threw the switch overnight. I realized I was different too, at least to myself. I no longer saw myself as youthful or virile. Unless I became Bill Clinton interns wouldn’t be chasing after my body. It was time to throw out those occasional foolish fantasies that dared to cross my mind. The reality was that someone other than my wife would never give me a second glance. I was yet another invisible middle-aged male.

Yet I rebelled but didn’t know what to do. Eventually I said no to a high caloric fern bar dinner. I bought a large Chicken Caesar Salad at a Schlotzsky’s Deli. I ate it quietly in my room and tried to accept my new reality. I don’t know if it will ever fully sink in. I suspect when I am in my eighties, just like my mother, that I will still ask just who is that stranger in the mirror.

June 23rd, 2004 at 08:21pm Posted by Mark | Life 2004 | no comments

Selling Immortality

Back in February, in an experimental mood, I accepted an invitation from my good friend Renee to attend a Wellness Seminar. I knew going in that this was going to be very New Age-ish. So I went into it feeling both open and cautious at the same time.

Renee is a friend I made in graduate school back in 1999. She is a couple years younger than me. We are both working through our midlife crises in our own unique ways. Her way is to find a new career in the Foreign Service arena. She wants a new career where she can apply her twin passions: information technology and helping the less fortunate. She’s still working on realizing her ambition and is now working on a graduate certificate in Public Policy. Meanwhile she still makes a decent living working for a defense contractor.

The wellness seminar was held at the Cedar Lane Unitarian Church in Bethesda, Maryland. Her friend Paul Fogarty put the seminar together. Paul is deeply involved in the Mankind Project. The seminar depended mostly on word of mouth and drew perhaps fifty people. There were times when the number of practitioners seemed to exceed the number of attendees. But for a first attempt to do something like this I think it went pretty well.

One of the first events that piqued my interest a lecture about antioxidant levels in the human body. Most of us know that by eating certain vegetables and fruits high in antioxidants we can reduce the risk of developing cancers. Antioxidants have a number of other healthy effects on the body. The lecturer demonstrated the first FDA approved machine that measured antioxidant levels in the body. We were invited to have our antioxidant levels measured free of charge. We put our hands up to a machine for a couple minutes. It projected what seemed to be a strong red light into our hands. Eventually it gave you your antioxidant score. Both Renee and I took the test. Not surprisingly the machine rated our antioxidant levels as “poor”. Clearly the three to five servings of vegetables I was getting a day weren’t helping me enough. But, as you might expect the man giving the test also had specialized diets and supplements for sale. These supplements he claimed were rich in antioxidants. He said if we ate them long enough we could move our antioxidant levels into the good area. Presumably we would then live very long lives and reduce our likelihood of contracting cancer and other maladies.

As tempting as this was I declined the offer. Meanwhile, out in the hallway was a man riling about the bad things in public and bottled drinking water. Don’t rely on bottled water or water filters he warned us. They wouldn’t remove all the impurities including some vile form of chlorine in the water that he assured us could cause cancer. It just so happened that he sold a water filtration machine (the only one of its kind on the market) that could remove these particular impurities. He assured us that he only drinks water from his own filtration machine now, and that he is healthier because his water is more “natural”. When he asked me where I got my water I drink I shocked with my reply “The Fairfax County Water Authority”. “You mean you drink tap water?” he asked, raising an eyebrow. Alas, despite his sound reasoning and the article from a medical journal that he showed me I didn’t feel inclined to buy his machine either.

Next up was a whole food salesman. This man warned us that the food most of us eat would end up killing us. We have to get back to as natural a food as possible, he said. It needs to be free of pesticides and other contaminants. In particular it must not be processed and must be as close to the raw state as possible. He had for sale a number of bags of really unappetizing compressed whole foods that I guess you were supposed to eat like a snack food. He recommended eating nothing but this for several weeks. He assured us as impurities were removed from our bodies we would feel so much better. I wasn’t brave enough to eat samples of the gray lumpy whole foodstuff he was peddling but Renee tried a bite. From the look on her face she wasn’t anxious to purchase any of it, and she is a vegetarian.

We put our names down for a massage. Renee went on the table first and I followed her in an adjoining table. We both got a free zero balance massage from a licensed massage therapist. My masseuse said it was a deep bone massage and he did stuff while lying on my back that was relaxing and a bit unnerving at the same time. But the price was right, even if afterward I felt like I might fall flat on my face for a few minutes. Those bones weren’t quite where I had left them!

Next up was aromatherapy with Juanita Ruth One. Or rather, she is a practitioner of kinesiology, which as I understand it tries to tune into your “body’s innate wisdom”. Basically she had a couple dozen vials of essences. Each essence was suspended in a solution of water and vinegar. She put one drop of each essence under my tongue and then measured how my body reacted by seeing how I held or did not hold a card between my fingers. If I held the piece of paper it was (according to her) my body saying I needed more of it. If I needed more of an essence she found a complementary essence and tried that test. I must have been a difficult case because I seemed to need most of the essences she had, whereas Renee needed about half as many. It seemed a little loopy but she seemed sober and sincere enough. Reading her biography I discovered that some forty years ago she had a near death experience. As a result of it she is convinced there is an afterlife. It was a strange session. At the end she told me that the sexual force was a natural force that I should respect. She gave me a hug too and a list of the essences my body craved.

Renee and I spent much of the afternoon in a wellness coaching exercise with a lady named Natalie Matushenko. Unfortunately I have had many opportunities to get to know psychiatrists, psychologists and social workers in my 47 years but this “coaching” thing was new to me. This young, vibrant (and very good looking) coach put the group of us into teams of two. I spent most of my time with my partner Renee. Some of the exercises were really fun. She’d draw circles on the floor and put names on each circle and have us move to the circle that described us best. We worked on things like strengths and fears and then developed some concrete steps we could try to improve our lives. We were paired up with someone else and asked to get their phone number and email address. We did this because we were supposed to check back with them in a week to see if they had followed through on their plan. I neglected to do this, as did my partner, but I actually did try some of the suggestions on improved marital communications that I wrote down. It’s unlikely to dramatically improve my marriage but it certainly didn’t hurt.

Overall it was a mixed experience but I am glad that I went. I can see some value in having a personal coach. The massage felt great and the aromatherapy seemed a bit weird, but there might have been something to it. The other seminars seemed more like sales pitches around a common theme: extend life through changes in environment.

And I’m certainly all for having a long and productive life. I don’t want to meet my maker any sooner than I have to. And yet for me there are limits to this life extension business. I cannot or will not change my habits so much that I deprive myself of so many of the pleasures that make life worthwhile. While I will avoid most of the obvious vices I don’t think I will wholly give up meat laden with antibiotics, or totally avoid those yummy but calorie intensive processed foods. I will do my best to watch my weight but I won’t always be perfect. I’ll eat sensibly and exercise regularly and take my chances. Life at its best should be like smelling a rose in bloom. But for at least some of these wellness people, life is simply about prolonging living, not about garnering meaning from life. I guess when it gets right down to it I’d rather live a life well lived than live a prolonged life and not revel now and then in the joy of a dish of ice cream or the pleasure of a well marinated and tender steak. To do so suggests to me an almost unnatural and unhealthy obsession with avoiding death. Yet all of us will eventually end up dead in a box. To live a long life but to have not really lived it seems an obscenity of a sort. So yes to those New Age practices that help me participate in life more fully. But nix to those New Agers pandering to our own very natural fears of mortality. In that sense they are like a preacher hunting for more souls to come to Jesus.

April 3rd, 2004 at 08:49pm Posted by Mark | Best of Occam's Razor, Philosophy | no comments

Senior Citizen Paradise

I apologize if this sounds like an advertisement. It was not intended to be this way. But I have seen paradise. And you don’t have to die first to get in. You simply have to be 62 or older and have a few hundred thousand dollars in assets available.

I discovered retirement living because my parents seem inclined to move from their house in Midland, Michigan to a retirement community. The community they are planning to move into is located across the Potomac River from me. It is called Riderwood. Last Friday I joined them and my sister Mary (who did all the research) as they checked out the place. I left amazed, impressed and more than a little jealous.

My mother’s health is clearly declining. She is unsteady on her legs, which is not too surprising for a lady almost 84. As long time readers know she has had some bad falls lately. Their willingness to relocate was prompted by concerns from us children, none of whom live closer than 300 miles from them. They have almost no support structure in place in Michigan should something happen to one of them.

American capitalism has responded. There are lots of retirement communities out there but I doubt none have done so well as this particular Erickson community. It is a gated community full of large residential apartments interconnected to each other and overlooking lovely courtyards and ponds. Each building is between four and a dozen stories tall. All were designed specifically for senior citizens in less than optimal health. The goals at Riderwood are choice, comfort, simplicity and safety.

The buildings are lovely and modern with lots of apartment styles from which to choose. Rents are pretty expensive. I’m not sure exactly what my parents will be paying but I think it is in the $2000 a month range. However, they get a lot for their money. They are not paying property taxes. They get one meal a day at one of the four restaurants on campus. These are good restaurants with fine food; they ate there to make sure. There is plenty of parking but most of the time there is no need to drive anywhere. You name it and they have it: mini-mart, bank, meeting rooms, theater, lounges, chapel, even a bar. For those too old to drive they can take one of the community buses to one of the nearby shopping centers. Riderwood has its own doctors and specialists. But it is not too far from modern hospitals, should they be needed.

The apartments can be fully customized. You can paint it or add to it pretty much as you like. The doors are large enough to accommodate wheelchairs. It goes without saying that there are elevators in every building for residents who need them.

There are also a zillion clubs, a workshop, a TV studio, pool tables and all sorts of innovative security services. They have a gizmo on each door that the security people flip each night. It comes down when you leave your apartment. If they see it remains unflipped the next day they will check up on you, just in case you fell or are incapacitated. If you need some measure of safety beyond this, you can rent a device around your neck. Press a button and help is on its way. Or press the button in any bathroom.

And the place is beautiful, clean and the staff is just tremendously helpful. No one is kicked out of their apartments because they have run out of rent money. This is because to move in you essentially give them a lien on your assets. So I expect the entry fee is something in the neighborhood of a couple hundred thousand dollars. If you don’t keep up the rent your rent is deducted from your lien. If you end up dying there whatever is left over after expenses is given to your heirs.

So clearly this is not a place for a woman living on social security alone. But it is not beyond the reach of most people with good investments or who live in the middle to upper middle class. Since having assets is the key, if you envision something like this in your retirement then now is the time to start paying off those credit card bills.

My parents looked at another community, Charlestown, near Baltimore that they liked just as much. Unfortunately it has a waiting list of up to two years and its apartments are smaller. My parents can move into Riderwood much sooner, if they can sell their house. They have their work cut out for them in the next few months.

My Mom actually looked excited checking out the model apartments. I haven’t seen her genuinely happy in a long time, but I could see her figuring out how she would decorate her kitchen.

The community is not a dictatorship. It has its board of directors chosen by the residents. Certainly Erickson is in charge of developing the properties, but day to day control belongs to the residents.

Erickson is a company very much on the ball. I should probably buy some stock in it; retiring people is a big growth market and I bet no one is doing this business any better. Their business model is very sound too.

My only question is: Why should this model be limited only to senior citizens? I know I am ready to move in. I hate the whole house management business. Right now my wife and I are contemplating $10,000 or more to replace our siding. We also need to replace our stove, do some drainage work, replace carpeting … the expenses and hassle never end!

Something like this would work great for me. Both my wife and I hate cooking dinner. We’d love to traipse downstairs at our leisure for our “free” evening meal. I could use an ATM and a mini-mart in my lobby. Erickson, build it for ordinary people like me and we will come too.

Now I know what I want in retirement. I am ready. I think it’s not too early to get on an Erickson waiting list. After all I just turned 47!

February 10th, 2004 at 02:35pm Posted by Mark | Life 2004 | one comment

Thoughts on the Cusp of Being 47

It’s that time again. Tomorrow I have another birthday. To be precise, it will be my 47th anniversary of my birth. That means, in reality, I have already lived 47 years and I begin my 48th year. But never mind, 47 sounds better than 48. And age is just a number, right? So should I even be reflective about dates I check off on a calendar?

I guess so. I can’t pass any of my birthdays without some reflection. Being 47 is not particularly more difficult than being 46, and was a heck of a lot easier than turning 40. On my 40th birthday I hid indoors. Thank God my wife did not give me a 40th birthday party; she must have took my not so veiled threats of bodily harm seriously. Now turning 50 doesn’t seem so terrifying. I can join Alex Trebek and become a member of AARP, although I will be nowhere near retirement age. And I can pretend I will look a lot like Lauren Hutton, who recently passed 60. She graced the cover of a retirement magazine recently. It declared that 60 was the new middle age.

Maybe so. I can use balms like these, but as my age creeps higher the likelihood of my death becomes less abstract. Aging seems to happen at a slow enough pace so that I hardly notice the new lines on my face, or my need for trifocals, or spots of sun damaged skin or the occasional liver spot. Perhaps I flatter myself but I seem to still retain something of a boyish look. I have some gray hair but it blends in well enough with the dirty blond stuff that it’s hard for me to notice except when I am visiting a hair stylist.

In general my health is excellent. I weigh a bit more than I would prefer, but it is not a dangerous weight. And while I haven’t measured by BMI lately I work out with weights a lot, so much of my weight is muscle and not fat. Like most middle-aged people I’ve discovered I can’t eat what I want anymore. My inner child occasionally rebels against being on a perpetual diet but I’ve largely come to terms with it. I learned long ago that life isn’t fair.

I keep waiting for my midlife crisis to end. Every year I think I am just about there and I find out I was a bit premature. But this year it does feel that, if I am not out of the woods, at least I have glimpsed the edge of the forest. For much of my thirties and forties I was driven by an indefinable angst centered on thoughts of aging and death. But also I felt like my life was being directed more by what was expected of me rather than my own will. I often longed for the irresponsibility of youth with, of course, none of its drawbacks. Those fears, at least for the moment, have receded like a low tide. I now understand on both an emotional and a logical level that I am finite. That’s just the way it is. So I must accept this simple truth. This means if I arise each day in good health and with the ability to direct my life then I am blessed. I can’t stop death from happening to me someday, but I may be able to delay it. For the moment at least life is good.

I am king of my little hill again. I’ve staggered through some difficult problems when I was 46, including whether to change jobs (I start a new and more challenging job at the U.S. Geological Survey on February 23rd), my dear mother’s decline and partial rehabilitation and various family issues I can’t get into here. And the moment at least these problems feel sort of managed.

Yet the years go by so quickly. Sometimes when I think about it, it seems impossible that so much time has passed. My high school graduation is nearly thirty years in my past. My marriage is in its 18th year. But in my memory it is like it all happened yesterday. I often can’t reconcile in my mind the reality that so many years have passed. It seems surreal to be 47.

But if I have to be 47, I feel good about being where I am. I pictured myself in my youth at 47 as a much older and weather beaten creature than I actually am. For a couple years, and longer perhaps, I can have the illusion of some youth. I know I see a fundamentally false picture of myself but I don’t care.

So I am trying, and usually succeeding, at smelling life’s roses. I am fortunate in so many ways. I have a job I enjoy and that pays very well. I have the free time I need to putter and indulge my hobbies. Soon I will not have to endure the torture of a soul draining commute to and from D.C. every day.

Life offers no guarantees. It just is, but I can make it as pleasant as possible given its chaotic nature. During my 47th year my parents will likely move to this area for the simplicity of a retirement community and to be closer to my sister and myself. It will be good to see more of them and be able to help them without driving 600 miles. But their move also brings with it some anxiety of being a caregiver.

I will need to be there for them in their last days. I know I will do my part to bridge their passing. No one should leave this world unloved and uncared for, and I will do my best to make sure that is one less burden they have to face at that time of life. I will keep my fingers crossed that problems with my wife and daughter will become less difficult and more manageable in the years ahead. But there are no guarantees. There may be lots of heartache and misery in the years ahead.

All the more reason that, on the cusp of 47, to seize the day.

January 31st, 2004 at 12:17pm Posted by Mark | Life 2004 | no comments

Sandwiched

I have officially joined the Sandwich Generation. For those of you unfamiliar with the term, this means middle-aged people like me who have children, aging parents (not to mention a full time job) and have some responsibilities to care for both. It became official when I arrived in Michigan eight days ago to help care for my mother, age 83, who was in the hospital recovering from a bad fall.

Prior to this trip I had only gone to visit them for vacation. It is true about a year ago I went to visit them alone for most of a week, both to touch base but also to assess how they were doing. That was a worrying trip because it was clear that my mother was on the margin of not being able to fend for herself. Now, while she made it back home from the hospital after a 15-day stay, she needs constant care and attention. Since I returned home, the burden is now on my Dad, who is reasonably healthy, but is still 77 years old (my Mom is 83). My mother now has to walk with a walker and needs assistance getting up and down stairs. She needs assistance for most things, including intimate things like going to the bathroom and taking a shower. In general she should not be left alone when she is up or mobile. It’s going to be tough on my father, who has never had to do this level of intense care before, and I worry that caretaker fatigue may get too much for him. As one example of his new duties, my mother must be escorted to and from the bathroom. This would not be so onerous if it was just during the day, but she also goes a couple times a night. So my Dad bought a baby monitor and rises with her 2-3 times a night to assist in that too.

My mother is a feisty woman and used to being independent so this is a difficult transition for her. If balance control were not enough she also has other conditions including Parkinsoniasm, i.e. symptoms consistent with Parkinson’s disease. Her mother died of Parkinson’s disease. In my mother these symptoms are manifested in a shakiness of her hands. She cannot type any more. She really shouldn’t be anywhere near a knife either. She can do some things for herself but these are shrinking rapidly.

Most of my week in Michigan was spent with my mother in the rehabilitation section of Mid-Michigan Medical Center in Midland. She was kept busy with morning and afternoon physical therapy sessions where she painfully and tediously relearned elementary things like ascending stairs (with a walker), sitting down, getting up safely and even opening a can of soup. Perhaps what was most remarkable was that even though my Mom struck me as fairly impaired she was in the top ten percent of the people undergoing rehabilitation therapy. She was in a good hospital, but spending so much time around people in such bad situations was awkward and difficult for me. If one were to judge the end of life from seeing the aged and infirmed in the hospital, it would be something to dread. I would prefer to die suddenly. I would not fault my daughter if she did what the Eskimos did for their parents: put me on an ice flow, and kick me adrift in the Arctic Ocean. It seems more humane than the extraordinary steps I witnessed to keep people who are barely functional alive. Some images, like the woman who spent most of her time staring ahead in a blank gaze, will haunt me for some time.

My mother gave so much of herself to us when we were young it seemed more than appropriate for me, even though I was six hundred miles away, to free my schedule and spend time helping her out. It was an awkward change of roles. I escorted her back and forth to the bathroom numerous times, wheeled her places in her wheelchair, and tended to a thousand little tasks that were beyond the time and patience of her busy nurses. It’s important for her when she sleeps to have a pillow between her legs, and to have the lights adjusted just so, and to have a blanket laid in a certain way so she can easily put it on or throw it off. In addition we spent a lot of time talking about things. She was sometimes in a fog but the conversations were generally good and meaningful. She hasn’t lost her marbles quite yet.

What I found most difficult to endure was simply watching her in bed. My mother has always been so vigorous and here she was reduced to near immobility. Even worse we knew that things would not get appreciably better. Her days doing things she enjoys, like cooking and gardening, are pretty much over. There were also hosts of medical issues to sort through. She wasn’t sleeping more than an hour or two a night, and hadn’t for months. I had to help work through medication issues, and sort through the problems by talking to lots of doctors and nurses. I became her primary patient advocate.

If all this wasn’t enough there were also major lifestyle issues that had to be addressed. Until now the roles in her marriage had been very clear-cut. She did cooking and laundry, for example. Now the tables were turned. My father had fortunately got some training from my mother in doing laundry, but I had to reinforce some basic and simplified cooking techniques since this was something my father really never had to do in 77 years! Anything beyond making a sandwich was complex for him. Since their marriage was based on roles that had been reinforced for over fifty years, they had to radically change things. In addition to caretaker fatigue in my Dad, I was very concerned that the emotional aspects of their marriage would get all out of kilter. Between my sister Mary and I we were able to get them to agree to get some joint counseling.

I have always suspected that it was difficult for my father to see life through my mother’s eyes. The same is also true in reverse. Both are really such quite different people it’s hard for us children to understand how they came together and married in the first place. I doubt they are unique in having long-term communication problems, although it is clear they both love each other very much. As the roles change in their relationship I now realize it may be possible for my father to develop true empathy for my mother. For the first time he will have to walk in a nurse’s and mother’s shoes. We children can only hope that they do so in a way that will eventually strengthen their bond of love, rather than causes more disharmony and friction. These patterns are long set and it’s hard to imagine how they could both turn more pliable at their ages.

What goes around comes around in time. It almost seems like God was saying, “I’m going to put these two together and give them numerous opportunities to work on their differences. But just in case they don’t do it, when Lee is old she will develop problems that will force a change in perspective for both of them.” In short I sometimes wonder if their relationship was stuck in concrete for fifty years because both found the patterns generally comfortable, if occasionally irritating. Now they have no choice: these fundamental problems in their relationship must be fixed. Either each gets the perspective of the other, or some sort of disaster looms. I can see my father breaking down emotionally from the strain of taking care of her. But hopefully he will find the resources and the therapy he needs to make this transition. I did my best to point him in the right direction.

In case you are wondering, we, their offspring, are beside ourselves and deeply worried about this new arrangement. While my mother is doing well under the circumstances the likelihood of another fall, from my perspective, is quite high. Her physical therapists recommend that they live in a one story house, condominium or apartment. We, their children, don’t want them hundreds of miles away. We feel the obligation to be there for them, but so far neither seems inclined to relocate and it would be impractical for us to relocate to Midland. I am hoping that after a few months of struggling through their current situation the logic of relocation will become clear. And when that decision arrives, assuming my mother hasn’t further injured herself and ended up in a nursing home (the logical next step), we are aware of the huge logistical issues involved in finding them a new home and relocating them.

We are sandwiched. But I don’t mind, for my siblings and I must also grow further too. We have to take responsibility for their care and ensure for their safety. And we all want to do this now. For the moment though we can only pause, hold our breath and hope our parents choose to make the choice to relocate and simplify their lives.

I feel like I have put on another coat of responsibility. Before I left for Michigan I could think of my parents’ problems in rather abstract terms. Now that I have been there, have seen my mother through some intense times, and dealt with the situation on the ground I feel vested in the solution. The emotional heartstrings I’ve always had for those who gave me life have proven to resilient, and their pull is still strong.

I am not a praying man, but I am inclined to pray for them now in what is likely the most difficult time of their lives.

October 27th, 2003 at 11:26am Posted by Mark | Life 2003 | no comments