These stories talk about caring for our elderly from remote locations.
Deciding the best course for aging parents is a compromise between their plans, the wishes of their children and the reality of their finances. Families suddenly faced with this decision have to come together to make tough calls.
By John Perry
I am sitting in a hospital room in Harlingen, Texas, in 1998, sometime past midnight. Across the room our father sits in a straightjacket, with its long arms tied to his chair, and struggles to get out.
We found out that he had Alzheimer’s about two years before that. Along with my wife Frenchie, we converged on Harlingen after our mother had a stroke. At yearly family reunions, in San Antonio or in the Rockies, we had seen some loss of Dad’s characteristic mental acuity. But seeing him at home, without my mother to cover for him, it quickly became clear that things were much more serious than we had realized. He fed the dog many times a day, forgetting he had already done so. He was confused about where Mom was, and what had happened to her. When he watched my sister Susan cook an apple pie, he acted more as a boy helping his mother than a father supervising his daughter. He recognized us, but greeted us each morning, as if we had just arrived.
For the next two years, while we coped with my mother’s rehabilitation, second stroke, and death, and my brother’s death from cancer in Florida, we took turns flying to Harlingen from California to be with Dad. A wonderful woman, Mandy, took care of him at his home for the first year. Then we transferred him to the Alzheimer’s wing of a rest home. He thought he was back in Italy, where he had been stationed during World War II --- but now he was POW in a nice villa. He wasn’t particularly unhappy about it. The “Italian nurses and guards” treated him well, he thought. The food was good. Occasionally he and his friends would slip notes under the fence, hoping to be rescued when the Allies arrived. Once when Susan visited for dinner at the rest home, he took her hand upon leaving the dining room and said to her, "Well, honey, it's time to go, we must get across enemy lines before it gets dark. Cm'on my plane is just outside.”
He needed prostate surgery, and I flew down to be with him. Things didn’t go well after the surgery. Every so often he would discover his catheter, and, having no idea why it was there, pull it out, painful as that must have been. I stayed in his room to try to prevent this. It was a constant struggle. Eventually the nurses put him in the straightjacket. They said I could go home; the straightjacket would keep him from hurting himself until he fell asleep. But I wasn’t sure, so I stayed in the room. Dad did fall asleep, but then he woke up.
On a bombing run over Ploesti in 1944, our father’s B-24 lost two engines, and, after the bombs were jettisoned, the bomb bay doors wouldn’t close. The plane could not maintain altitude until one of the crew managed to pull them closed by hand, hanging out of the plane, held by his ankles. They could then maintain altitude, but not climb. At that altitude, by any of the routes on the map, they could not get through the mountains of the Balkans back to Italy. It fell to our father, the navigator, to figure out a new route. He made insightful conjectures about valleys and low ridges that might lie between the sources of rivers flowing east and rivers flowing west. And he figured out a route that worked, with only feet to spare. The plane limped back to Italy. He was awarded a Distinguished Flying Cross --- a fact we didn’t learn from him, but only by finding the award stuck in a drawer.
Now I could see the same sort of determination at work. Waking up to find himself in a straightjacket, undeterred by my assurances that things were okay, Dad carefully, methodically, worked on getting out of it. Slowly, over about an hour, he managed to slide off the front of his chair, inch by inch. Then he worked the chair over his head and rotated it so his arms weren't crossed. Then he began to slowly ease himself out of the jacket. I watched, fascinated, but, knowing my father, not all that surprised. Before Dad could pull his catheter out once again, I went for the nurse, who was astounded.
Within the year Dad became bed-ridden, and returned to his home again, with Mandy in charge. It all seemed familiar to him, but he thought it was a replica of a place he had once lived, constructed for obscure reasons by the Italians, rather than his own home. About two years after my mother died, he died a somewhat painful but not protracted death.
There is a paradox with Alzheimer's. The father we knew would have been mortified at what he had become, and that made the situation painful for us. During the first phase, when he recognized what was happening, he was depressed and terrified. But in the next phase, he seemed to find life pretty pleasant. It was sad to see him so diminished. But, at the same time, we came to know him better in a funny sort of way. And we were certain that his deep traits stayed within a raw form, like his determination. He retained his charm and many of his social skills. A week or so after our mother's death, we had a reception for their friends. We saw our father greet and converse with people whom we realized he had little or no memory of. They didn’t catch on. He navigated the situation with appropriate but vague questions. Never "How's your wife" but simply, "How's your family?" "Do you remember that time we saw you in Minnesota?" one friend asked. "Of course, now when was that?" my father replied, having, we are sure, no idea whether it was a year ago or at a Summer Camp in 1925.
It was a difficult two and a half years, at the end of which my sister and I were all that was left of the thriving family of five we grew up with. It is difficult to contemplate the difficulties our situation would have posed if my parents had no money, and we had no time --- the difficulties most people would have had in our situation. As it was, although painful to witness, we both came away with a heightened understanding of our father's character. We heard many memories of World War II, a time that shaped who he was in important ways, but which earlier in our lives, he had never wanted to talk about. Alzheimer's is a sad malady to see someone struggle with, but it does present certain gateways into a person's soul. The memories Dad shared in this odd way left us a greater understanding and appreciation of why he was the person he was.
John’s sister Susan Perry helped write and edit this story.
By Chris Kitch
My mother married my father, her college sweetheart right after graduation at the age of 22. She had me at 23 and my sister at 25. Years later after my father's successful business career came to an end, my parents retired from Connecticut to Florida. Several months after the move my father was diagnosed with prostate cancer. They continued to live a full life together for 14 years until about 6 months before Dad passed away. 54 years of a pretty great marriage so far as we could all tell.
What happened after Dad's death is not a unique story. Millions have gone through this kind of pain and sorrow before my mother. The loneliness, sadness, the empty heart, the piles of paperwork, the void, but by her account you might have thought that she was a first.
Mom had never lived alone in her whole life before this. She was in a type of shock and yes, very lonely. The televison noise was a constant companion. Friends reached out but it was just not the same. My sister and I would visit for occassional long weekends from NY and CA and a week or 2 a year. They were good visits but we both dreaded the drive to the airport at the end of our trips when Mom would start crying and squeeze out her question of when we would visit next. She longed to have something to "look forward to."
This lifestyle continued. She began to play some golf and continued with her tennis.
As time passed the situation improved but it became clear it was time to consider a move to a retirement commmuntity if for nothing else but the socialization aspect of it. After a protracted search for the perfect community and then waiting for the perfect unit, the move took place.
Moving from 14 years of Florida condo living was stressful. Mom went with a small amount of kicking and screaming but eventually "landed" happily in her new home, which by the way looked very much like her "old" home. I am told it often works this way.
So now comes the good news! Three weeks into being the "new resident kid on the block" Mom met a wonderful man at the retirement home. As it turned out, they had both attended the same college in Ohio but did not know each other there. He had also known who my father was but did not know him. His wife had passed away suddenly 6 years earlier. He too had enjoyed a long successful marriage.
Friends introduced them at a dinner. Their chats became lenghty "life talks," frequent visits, home cooked meals at each other's condos and then they announced they were falling in love. He at 86; my mom at 83. Wow.
What seemed to be something that would never happen - happened! As my mother puts it "I have had the good fortune to have fallen in love twice in my lifetime." She called to say hello one day early on in the relationship and ended up in "happy tears," saying, "I thought I was happy but I never knew how happy I could be."
It is weird? Yes, a bit because he is not my Dad. Strange? It shouldn't be but it is a little. Remember this is my mother! Different? Yes definitely different but wonderful and my sister and I could not be happier for this shared companionship! Retirement homes are a huge leap for active people. In our case it really worked out well!
I share this story because I have many friends who have lonely parents who claim that they are not ready for a retirement community. This is of course certainly understandable. Not everyone will meet a second love but active entrants will enjoy warm and welcoming companionship. People need people and are almost always happier with special people in their lives.
By Barbara Trainin Blank
My mother passed away more than two years ago, but I still think of her every day and often miss her intensely. There are times, though less frequent than previously, when I pick up the phone to call her as I did every Friday when she was well and twice a day when she was not.
The passage of time has given me the distance to think about what I might have done differently to make my Mom's final days more fulfilling for her and easier for me. The actions and attitudes I didn’t have the presence of mind nor time to consider while care-giving.
Hindsight is 20-20, as they say, but if I had to do it all over again, I would have given my brother specific tasks so he would have become (one can only hope) more involved in our mother's care. I would have tried to be more understanding of the aides, particularly the one I didn't like. They did come from a different cultural background than myself. Losing my temper wasn’t constructive.
At the same time, I would have tried, whether through charm or toughness or both, to get the caregivers to do what I wanted and what my mother needed. They were not neglectful. But at times they watched over her passively, not allowing her to come to harm but little more.
I would have encouraged my mother to participate in social and other programs outside the house. Though between the withdrawal and depression, which often accompany patients with dementia, that would have been hard to do. I would have tried to persuade her to take art therapy, using the talents she had but had given up.
I would have asked for help from friends and family members when I couldn’t go to New York. My kids lived with my mother at one point or another during her illness, but were unable to oversee her care in the way that was needed. They were too young.
Above all, having learned since then about innovative and accepting ways of working with dementia patients, I would have been more patient with my mother, accepting her where she was, e.g., watching silly TV programs, rather than where I wanted her to be. I would have argued less with her irrational statements and taken things as they came.
For all that late-found awareness, I know that no one in my situation could emerge unscathed without feelings of guilt, sadness, and inadequacy. Dementia justifiably frightens people more than cancer. Ultimately, though, one has to forgive oneself. We all do the best we can, without the advantage of hindsight but with a lot of love and good intentions.
By Barbara Trainin Blank
It’s human nature to compare, to envy and to admire. So when I heard from a new friend that she had gone in to see her mother every 10 days (a distance of 220 miles) for several years, I was impressed.
After all, I had to traverse only 180 miles to see my mother, and “only” for about three years.
I was even more awed that her my friend’s sister had taken their mother into her home and cared for her for 14 years. My friend felt her visits were a way of “sharing the burden,” though, she added, “It wasn’t a burden. She was my mother.”
Maybe it was my own “fault” for getting into a remote-care situation, because I didn’t take my mother into my home. The “excuse” I gave myself then, and in retrospect, was that the professionals recommended that she stay in comfortable and familiar surroundings because of her dementia. But maybe I should have...
What also awed me was that, for the past two years, my friend had slowed down the pace of going to see her mother. But she never told her mother the reason for the decline in visits—she herself was ill and had a lot of doctor appointments.
Thinking about my friend and her sister, I asked myself: What reason did I have to complain? After all, during the years of taking care of my mother long distance, there had been a few other family and work crises, but I was in perfect health. I had ample energy. I was able to make the frequent trips between Harrisburg, PA., and New York City without great physical difficulty. It was exhausting, but doable.
Yet, going back and forth did take its toll. I was constantly in a mode of catch-up, and constantly wanting to be where I wasn’t. It was an emotional seesaw.
Moreover, support was limited. At the time—something that’s changed—the caregivers I knew in Harrisburg had family members who lived nearby. Most of the family caregivers I knew in New York—where I had grown up—had to travel to a different borough to visit a parent, but it didn’t involve suitcases and three-hour Amtrak trips. These included the friendly visitor who came to see my mother regularly, although she had to tend to an aging parent in another borough as well.
People would say of my situation, “That must be really hard,” but it was a theoretical thing for them. It was only later, for example, that one friend told me she couldn’t imagine doing what I did—that life was tough enough with her elderly father nearby.
The challenge of long-distance caregiving was one of the inspirations for my (co-authored) self-help elder care book, What to Do about Mama: A Guide to Caring for Aging Family Members (Sunbury Press, 2013). One challenge common to all caregivers, though, is the attempt to find a support group with others who understand what you’re going through. But that eluded me as well. I don’t know if there statistics about what percentage of caregivers are long-distance ones. But we can figure that with an estimate of 54-million Americans serving as unpaid caregivers to family members, there must be a lot of people doing it remotely.
Turns out I was the only person in that particular support group dealing with long-distance caregiving. Not that all kinds of caregiving don’t have their share of frustration—for one thing, long-distance caregivers aren’t bearing the total day-to-day, hands-on responsibilities for their loved one. I felt kind of isolated.
Sure, there were other caregiver groups, but this was the one comprised people closest to my background in general. Who had time to keep looking and also work and do what I was doing for my mother?
Ironically, I found the right support group—or framework for one—after my mother’s passing. Recently I facilitated a group of caregivers, who came together to share and compare experiences. As I listened to them I realized how important it is for caregivers, past and present, to talk to each other. It makes all the difference in the world, whether you’re caregiving near or far.
I also realized how lucky I had been. Some caregivers travel a lot farther than I had; some have full-time jobs instead of “flexible” freelance careers. Some have young children or more than one loved one to care for. Some do caregiving for many years. Though I was sorry to lose my mother when I did and miss her every day, I’m not sure I would have had the strength to go on for 14 years.
Still, at the time, it seemed like an impossible task to give care remotely. I was amazed the Amtrak conductors didn’t say, “Oh, it’s you again,” when they saw me with that small suitcase and laptop case looking frazzled and lost—sometimes crying or kvetching into my cell phone to someone for whom it was theoretical.
My husband tells a joke about Russia in Soviet days, when emigration was severely limited. A man demands to leave the country. Finally, he’s allowed to and goes to Israel. He comes back to Russia. Then he goes back to Israel again. Then he comes back to Russia, but this time, the KGB is waiting for him. They tell him he can stay or he can leave, but he can’t keep going back and forth. He has a half an hour to decide.
When the time is up, the man is asked his decision. He says: “I don’t know. Here it’s bad, there it’s bad, but the service on the airlines is terrific.”
It was stressful being home, feeling guilty and worried about my mother. It was heartbreaking being there, having a million things to do and watching my mother decline. Yet for all the occasional hassles of Amtrak (and the expense), there was something comforting about it. Especially when the Wi-Fi was working, and I could work. In between two points of tension was a feeling of liberation.
By Jane Flint
My mother, almost 95, lives independently, as we say of the elderly living alone. Here in California, her low-rent senior housing costs just under a thousand dollars per month. When she was a schoolteacher in the Midwest, our family of five all lived on a thousand dollars per month. Although she is frugal to a fault and very clever in guarding her monies, she never expected to live this long and there was no long-term care insurance when she retired. In any case, she refused to talk of death or dying or planning for either until they were upon her, and even now is hesitant.
She’s still healthy by the standards of being elderly. But she’s frail, and can no longer think away the inevitable. Besides rent and food, her monthly income just covers a once-a-week, half-day private home health aide to help her bathe, shop, and clean. One set back could send her spiraling. She has one choice now, to die at home.
Fortunately, in a way, this matches her own desires. Her town is hers. She chose it as her dream place to live when she retired, even though she knew no one there. Now, thirty years later, she has many friends, albeit fewer by the day. But she still maintains a small book club, a scrabble buddy, and people young enough to be her Lifeline responders. She knows the hospital and the grocery stores, and the people in the library and post office know her.
So why not stay at home? Isn’t that, really, what we all want – to die, preferably in our sleep? At home? In our own beds? Isn’t that how it's been done for centuries?
Except that nearly every process, custom, system, and service that currently supports the elderly seems to work with a very different set of assumptions. In our economic culture today, every human milestone is being mined for profit: the mortgage bubble became the school debt bubble. Companies are eager to data mine the shopping habits of young women to capitalize on the milestone of pregnancy.
And now it is the cost of dying that is expanding. Home care agencies, while they are making the work of home health care providers better, are also building in more profits and therefore costs. Doctors are expanding their markets to own these agencies, in addition to the specialty clinics, which their partnerships may also own. If agencies follow the model of specialty clinics, we can all look forward to markedly increased expenses for end-of-life care services.
Add to this the myth of the “miracles of medicine” and the unspoken reality that many “hospitals don’t do death.” The way to have choice is to have money but at a price that is beyond the means of most of us. The way to get help is to have no money, but the trade-off is to synchronize spending dollars down with the moment of need and then accepting severely limited options.
Scratch a little deeper and you find assumptions about family: the family should take over. If they can’t, there’s something wrong with the family or the elderly person. If they can, someone, often a daughter or daughter-in-law, sacrifices career, friends and family to the care of the elderly person. Many families need to choose between end-of-life care for their parents and health care, schooling, and retirement for their children and themselves.
Friends who have lived through this stage of life have had their own unique set of circumstances. My story is about living with the changing family dynamics wrought by my aging parent, against the current backdrop of economic reality and expectations of society.
We are three: my older brother, my younger sister and myself. We all work and see ourselves needing to continue work well into our sixties. An additional complexity is that our mother, who thankfully suffers no signs of mental incapacity, is a challenging person: willful, determined, desirous of control. As a young adult, one of us disowned her and then came slowly back to her. One of us bonded tightly and now needs to separate. The third decided long ago that an email once a week and a visit once a year would suffice for duty. One sibling lives at considerable distance. My mother has repeatedly declined a long-standing offer to live in the in-law apartment one of us maintains, and wasn't ready for residential care when she had a bit more savings, so the other two of us remain a minimum of three hours away from her by car.
Despite our differing relationships to our mother, we all came to an agreement after her last health crisis. A fall two months ago made it clear that staying in her own apartment is her last and only choice. Whichever of the three of us is physically closest and most able to go to her at the time of crisis will deal with it.
There is comfort in knowing the three of us agreed we don't want what happens at the end of life for our mother to estrange us from one another. But as I sit with our decision, I’m feeling uneasy. I realize that whoever happens to respond to the last crisis will have the additional burden of working out all the details in real time.
Has she, in a pique of anxiety, overwritten her DNR? Is it better to call 911 knowing that could lead to great expense and her dying in a hospital? Or is it better just to be caretakers? Are there personal liabilities for that decision? What would a commitment to caretaking look like and for how long? None of us can afford extended time away from work. None of us have sufficient savings to fill the financial gap. How much is she willing to cede decision-making to any of us in crisis? How would decisions be negotiated between her and us during a crisis? What decisions might lead to one of us having to inform her of and implement on her behalf a choice she will refuse? How much can we really ask her local network of friends, elderly themselves, to play a role?
If I am the one on hand, how will I deal with the not-knowing? With the doubt? Betrayal? Second guessing? With the judgment of others who will say, “You should have...” “Tough love...” etc. Will I empathize or rescue? Resent or pull away? Will I be able to ask my siblings for their participation? Will I know what to ask for? Can their help come in time? Will they be willing? Where will we each be in our sometimes stormy, sometimes friendly relationships with our mother? Each other?
I don’t know. But today my plan is to use this time before her end to prepare myself. Is there such a thing as an “intuition push up” or a “sensory crunch” that I could be practicing? What are the exercises for breathing, trusting, letting go that will work for me? Can I really know inside myself and accept that her end could be incomplete, imperfect, conflicted for me? Could I imagine passing the responsibility for what happens off my shoulders to be held, instead, by the fact of my humanity?
What I want to be is ready to be there, willing to hold her hand, able to forgive myself if love eludes me in the moment and I feel like I'm acting out of necessity or duty, able to feel whatever love is there.
By Amy Abbott
She has always had her own speed.
On the day - many years ago - we were to pick up my wedding dress, we stopped to have a sandwich. The store was thirty minutes away and I was ready to go and pick up my beautiful lace dress.
Mom ordered a hamburger and cup of coffee. When the hamburger came, she took the bun off and arranged the pickles just so. She picked up the ketchup bottle, examined it, and put three dots of the red substance on the top of the burger. She replaced the bun. She flipped the burger over, removed the bottom bun, and dotted it with mustard. She arranged a tomato slice and a piece of lettuce to her liking. Then she took her first deliberate bite.
Meanwhile I had downed a Cherry Coke, a double burger, and French fries. I was eager to move on. I let her know clearly that it was my day and I was angry for her needless lingering.
Fast forward three decades.
I am "watching" my mother for a day while my father has some recreational time with his grandson. Mother is in the later stages of dementia, staged by a neurologist somewhere between moderate and severe. She sometimes knows me, and sometimes doesn't.
Even though I saw her fourteen days ago, there are changes. Dementia does not wear evenly. It takes snatches of personality away in uneven grasps. Sometimes you do not miss what was there until it is gone, and then you remember. It is sad to see the changes over time.
When I am with her, I remember that day of picking up the wedding dress, a beautiful white lace dress with a short lace train. I remember another day, of how happy we both were when we found that perfect dress, how she clasped her hands to her face and smiled and cried at the same time. I regret my behavior on the day of picking up the dress, and I have vowed to be patient with her no matter what.
She is slower now than ever before. As we leave the retirement home where my parents live, I have to hold the automatic door open. Even the doors with the blue buttons and the wide, slow arc are too fast for her. I remind myself to be patient no matter what.
We drive to Silver Dipper for ice cream cones, she orders one dip of butter pecan, and I get chocolate.
The ice cream store is full of children. My mother loves babies and she is enthralled. Children are drawn to her like a magnet. One small boy with a Purdue football shirt on walks to her, holds out his cone, and says, "I have ice cream."
It is evident he has ice cream. It is all over his face, above his nose, and down his neck. She laughs aloud.
I said, "Mom, did you and dad go for ice cream when you lived here 55 years ago?" (They moved back here to their college town five years ago after half a century away.) She looks at me as if she does not know who I am. I remind myself to be patient no matter what.
"No, my husband and I couldn't go out for treats a lot because we were saving money to have a baby. He and I were teachers, you know." Of course, that baby would be me.
Just then, she realizes her butter pecan is dripping all over the table, and she laps it up, enjoying the rich, butterfat of real ice cream. Instead of being impatient as I would have been years ago, I laugh and lap at my chocolate cone.
By Donald Rodrigue
It’s always difficult for a child to watch an elderly parent gradually lose his or her independence, but it‘s even more difficult to look after them from a distance.
For the past several years, my wife Gloria and I have watched the steady decline of my parents, Joe and Betty Rodrigue of St. Cloud, Fla., a small community about 20 minutes south of Orlando. We live on the Treasure Coast, about two hours to the southeast. My father, 87, suffers from Parkinston’s Disease and dementia, while my mother, 80, is his primary caregiver. My father gradually lost his ability to walk unassisted and take care of his own needs after a severe fall in the summer of 2010.
My mother refuses to institutionalize him and is fortunate to have my grown sister Patricia living with them. My mother’s caregiving efforts are augmented by the assistance of home health aides who come in for a few hours a day while Patricia works full time at a nearby Wal-Mart. Even with help, watching over my parents from a distance is very stressful. My wife Gloria and I have seen my mother age over the last several years as she struggles with the emotional and physical challenges of caring for her husband of almost 60 years.
In order to be closer to them, we moved to Port St. Lucie from Miami in 2007. Now it’s even feasible to go up and come back in the same day, which has been necessary a few times.
My mother’s increasing insecurity of being left alone with my father is also becoming a matter of concern. She can no longer get him off the floor if he falls. And she has frequently had to call 911 or a neighbor to help get him up. Now whenever I am visiting on the weekends, my mother will usually beg me to stay longer to avoid being without help. She frequently asks me to come earlier than planned as well.
About a year ago, my mother fell while outside tending her garden. She hurt her ankle so bad that she was unable to put any pressure on it. Needless to say, her getting my father out of bed or a chair became almost impossible. I had to change my plans and make an unexpected trip that weekend in order to help out.
I found it essential to have the telephone number of at least one neighbor. One weekend a while back I could never get anyone to answer the phone at their home. I was at the point of making the drive when I remembered to call the neighbor, who graciously agreed to check on them for me.
Early on in her caregiving, I was able to help them with some much-needed home repairs from a distance, however. Through their local Council on Aging, I discovered they qualified for some free home weatherization. Within a couple of weeks, work crews had installed new solar window screens, water-saving bath fixtures, a digital control for their central air unit and a new, energy-saving water heater, all at no cost.
Long distance caregiving has failed me in at least one financial situation, however. About a year ago, my father’s life insurance company decided to more than double the monthly premiums on his whole life policy due to his advanced age. My mother said she was working to resolve the issue but could not afford the difference in the payment. I failed to keep up with the matter and only recently found out they had completely lost the policy he’d been paying on for 20 years. Now, as my father enters the twilight of his life, I realize he has neither life or burial insurance to help cover his final expenses. Perhaps had we been living closer to my parents, this outcome might have been different.
Anonymous
I live on the East Coast and my parents live on the West Coast, in a rural setting. They have been together for more than 60 years and have always been self-sufficient-- priding themselves on doing things their way. After all, they are children of the Great Depression who have always done what’s necessary to make their lives work. My two brothers live closer to my parents, but they are both several hours away.
A few years ago, my mother—who had already survived colon cancer—was diagnosed with a Parkinson’s-like neurological disorder. Slowly she has lost the ability to walk and care for herself. These days—at age 89— her ability to speak and swallow is also impaired. She remains, however, mentally alert and engaged.
Being so far away from my parents has been troubling. I felt increasingly anxious as my mother began to have falls in the house. As the one unmarried son, I felt particular guilt about being so far away from them and unable to help them with their day-to-day lives. My mother and I have always been close, but my relationship with my father has been complicated. He has always been a strong patriarchal figure—in charge, stubborn and short-tempered. And, as he has aged, he has also become a major procrastinator, wary of change.
As my mother’s health continued to fail, my brothers and I became certain that additional care was needed. My father at first refused help, even from members of the church community who wanted to offer assistance. My brothers and I kept pressing for change but it became clear that we had to dance around my father’s ego. I have friends who encouraged me to sweep in, lay down the law, and demand that things be done differently—something not in my nature. On occasion I did lose my temper with my father. During my visits, I witnessed him becoming increasingly impatient and cranky with Mom, and it drove me nuts. But exploding at him only worsened the situation.
Fortunately, my brothers and I are close and have been able to work as a team to prompt some gradual change. Eventually my father hired someone to come help with my mother three days a week. That later increased to five days, and now someone is there seven days a week, although no one is with them at night when my father must help my mother use the commode.
My brothers and I have worked out a system by which we take regular turns communicating with my parents by phone at several points during the week. We—along with my adult niece—time our visits so that not too much time elapses without Mom and Dad seeing one of us. We have also kept in touch with representatives of the care-giving establishment and with my parents’ neighbors, who have been very supportive and loyal.
I cannot say that everything is perfect. But my parents have made changes that have allowed them to stay in the home they have shared for six-plus decades. And my relationships with my brothers and my niece have grown stronger because we have faced this challenge together. There are difficult days yet to come, but I am extremely grateful that the four of us are there for one another.
By Barbara Trainin Blank
Be careful what you wish for. When my parents aged, I found myself praying my father would pass away first. My reasoning seemed sound: like many successful career men at the time, he was highly intelligent. But he couldn’t cook or sew or do laundry well, and if he went shopping, he’d often come back with the “wrong thing.” My mother, on the other hand, was less educated, but practical. Theirs was a traditional division of labor. I figured my mother would do fine, except for the grief, whereas my father would be “helpless.”
In January 2008, my father passed away. Suddenly. Under treatment for cancer, and doing well, he had a stroke. My mother was in a state of shock and intense grief, or so we thought. Pretty quickly we realized another element was complicating the picture: dementia. It wasn’t changing her personality much, at least not yet. But it was affecting her short-term memory and ability to function and focus. Usually the one to pay the bills, she couldn’t understand how to balance a checkbook. Once totally organized, she’d obsessively look for her keys or credit card, even when she had seen them the second before. She seemed lost in the world.
Although my brother lived only 40 miles away compared to my 180, I found myself assuming most of the responsibilities for our mother’s care. He visited, but I did most of the work. Many people assumed it was a male-female thing, but the experts said, “That’s just the way it is in families,” unrelated to gender.
Every two to three weeks, for nearly three years, I took the train from Harrisburg, Pa., to New York City to see her. Much more than visiting was involved. I became a companion, caretaker, tax preparer, banker, shopper, organizer, and walking medical record. I hired and supervised home health aides and case managers, a process that was sometimes excruciating when aides came and went, and filled out long-term-care-insurance forms. I recruited friendly visitors and volunteers and consulted with physicians, physical therapists, nurses, and hospice workers when the dementia was followed by cancer.
When leaving my mother, I was exhausted, relieved, and guilt-ridden. At home, I worried so much I immediately thought of going back. Watching her deteriorate mentally, though she continued to recognize us, was more painful than almost anything in my life. When she died, in November 2010, I could have felt relieved. Somehow, all I could think of was how hard it was to watch her that way.
It could have been worse. My mother could have lived farther away, or somewhere Amtrak didn’t serve. I could have been a single parent or only child or had a husband who pressured me to stay home more often. My mother-in-law could have been sick at the same time, or my kids could have been smaller. But things were tough enough.
There was one consolation. My mother had begged me in the early stages of her illness not to put her in a nursing home. By traveling hundreds of miles on Amtrak and the subway, and stretching myself to the limit, I fulfilled her wish.
By James Croxon
I often tell people I grew up between a hospital and a military base. My father retired from the Air Force a few years ago and my mother spent her life as a nurse. Unlike my father, Mom never really retired. She just doesn’t get paid anymore.
Mom is the only nurse in the family. She’s the de facto person for all medical issues. In practice this means she’s permanently on call, answering questions about every illness, soreness or general boo-boo. She’s also the assumed go-to person to handle any death in the family- logistics, grief counseling, hospice arrangements. She’s cool under pressure and has correctly questioned diagnoses from physicians on more than one occasion.
In 2004 I joined the Air Force. Military life was familiar to me but moving thousands of miles away was new and uncomfortable. Knowing my mother was a phone call away made moving and starting a family of my own easier. I called her when my first son wouldn’t stop crying, when my second son was hospitalized with RSV, and when I cut off my fingertip in the kitchen. She was always there.
In 2010, I called Mom to complain about another medical issue. Like always, she joked that I only called her for medical advice. She sounded tired, less like herself. She answered my questions, told me she loved me and then told me she was diagnosed with thyroid cancer, as if she was telling me it was getting cold outside.
Flooded with emotion I asked questions, drug out every detail. When? How? What happens next? Only, I couldn’t call and ask Mom her advice this time. She was the one who needed care, and I was 1,500 miles away.
The logistics of living far from one’s parents is often overlooked until it poses a problem. For a number of reasons I was not able to come home to be with my mother when she had cancer treatment. I couldn’t be there when she had brain surgery shortly after. She never complained. She maintained that it was no big deal, but the helplessness of life shamed me.
Due to her illness, I forced myself to change how I interacted with her. I called to ask about her, sent photos more often, used my vacation time to return home. I used technology like Skype to see her and let her see her grandsons.
It’s not perfect, but it’s life. I can’t be with my mother as often as I’d like and help as she ages. However, I’ve joined her support system, made up of my siblings and family, and now we are more connected than we have been in years. Of no surprise to anyone, Mom beat cancer almost effortlessly. If she is ill again the family, me included, will rally behind her. But for now, the nurse is back on call.
