Angela F., author of the blog A Survivor’s Guide to Huntington’s Disease?, learned on November 8 that she had tested positive for the genetic defect that causes Huntington’s disease. She asked me: “I am curious about how you coped when you got your results. How did you pull yourself back together to get on with life again?” Angela was especially upset – as I was – that her geneticist had told her she could do “nothing” to avoid the onset of HD.
I had to face the news of Huntington’s disease tests three times in just a little more than four years.
First, on the day after Christmas in 1995, I learned the explanation for my mother’s decline: a positive test for HD. (Ever since then, the holidays bring the stark reminder of how the threat of this disease has penetrated into every part of our lives and all of our discussions about the future.) The news came as a complete shock – especially because I learned that I had a 50-50 chance of inheriting HD.
Like many people, I had no knowledge of Huntington’s disease. I immediately called my mother’s geneticist back in my hometown to get more information.
Considering the news
I told him that I wanted to get tested immediately. But he cautioned me to take my time and to consider all of the consequences, including the danger of being denied insurance coverage. I contacted the head of the local chapter of the Huntington’s Disease Society of America (HDSA), a woman whose mother also had HD. She further counseled against a rash decision about the test. I began researching HD, especially the news of potential treatments, and I attended the next HDSA support group meeting, where I met other people at risk and, for the first time in my life, saw a group of individuals severely affected by the disease.
For the next three and a half years, I attended as many support group meetings as possible. I heard one scientist give a presentation on coenzyme Q-10, a supplement thought to be potentially effective against HD, and I started taking it. I listened to at-risk people tell of their wrenching decisions to test or not to test. I volunteered for the local chapter of HDSA, helping at fundraising events and dedicating increasing amounts of time to other activities.
This was my rational side in action. It was my way of fighting back and answering that inner voice that kept telling me, “You must do something!”
Emotions take over
However, as much as I unconsciously tried to cover them up, my emotions began to take over. A complex mixture of overwhelming fear and powerful denial regulated my life in the first few years after learning about HD.
On the one hand, I felt my life changing forever because of the possible onslaught of dementia and chorea, the shaking movements of HD. One night not long after the news about my mother, my wife and I lay in bed discussing HD. She held me tighter than ever before.
On the other hand, I became reckless in my pursuit of professional success and pleasure. Over a year, I took a big professional risk by focusing on a project that would bring me more immediate satisfaction and a shot at glory. That project kept me from confronting HD more seriously. I devoted very little time and effort to other parts of my life, including my relationship with my wife. My passion for life ran wild, but often in the wrong direction. Instead of solidifying what was most important in my life, I tried to escape into dreams of grandiosity. Because HD loomed as a specter in my life, I wanted to pack in as many experiences as I could before falling ill.
Throughout this period I put the question of testing for HD in the background. At the HDSA support group and from my readings, I learned that ignorance could be bliss. Living without the knowledge of my status was better than having to face the rest of my life knowing that I would die a long and horrible death caused by HD. I preferred not to play the 50-50 odds that I might have the genetic defect. After all, there was no cure or treatment for HD, so why suffer beforehand?
Facing the inevitable
I probably would have remained untested if it were not for the growing pressure from my wife to have a baby. Because of our careers we had not seriously talked of children in the early years of our marriage. But in 1998 and 1999, after the new stresses of my at-risk status had complicated our relationship and further caused us to delay having children, she gave me an ultimatum: have a child or end the marriage.
Agreeing to have a child was like a cold shower of reality. My at-risk status meant that our child could inherit HD from me. We absolutely wanted to avoid this, because we did not think we could withstand the pain of raising a child at risk for this horrible disease.
It was an especially gruesome possibility because of a particular twist in the genetics of HD: in the process of conception a man, unlike a woman, can pass on a worse version of the genetic defect to the child than he himself has.
Because of this, in some HD families the children actually get the disease much earlier than the age of onset of their fathers. My wife stated unequivocally that she did not want to care for both a husband and a child stricken with Huntington’s disease.
Wanting to conceive
We began to steel ourselves for the possibilities. One was preimplantation genetic diagnosis (PGD), a new procedure in which an embryo is tested for HD in a test tube and is then implanted in the womb. PGD would have allowed us to have a baby without HD and, if I wished, I could avoid knowing whether I actually had the defect.
However, to obtain PGD we would have had to spend many weeks in distant Washington, D.C. and far more money than we could afford: $100,000. (PGD has since dropped to about one-tenth of that cost and is now available in other parts of the country.) PGD was out of the question, and there was no guarantee the embryo would develop successfully.
Another option involved testing the fetus in the womb. If the baby did not have HD, I could still continue with the ignorance of my own status. However, if it did have HD, I would know for sure that I too would get the disease.
The third option was logistically the simplest and cheapest, but emotionally the hardest: I could get the test before we checked the fetus. If I tested negative, we could forget about Huntington’s ever affecting our own family. However, if I tested positive, we would immediately have to deal with my results and prepare to test the fetus in the womb.
A tough choice
I decided on the third option. I was 39 and felt life passing quickly, and if I were ever to become a father, it would be then and with my wife. I also tapped into a reserve of bravery and stoicism that I inherited from my father. (He ultimately cared for my mother every day for more than ten years before she died on February 13 of this year.) And so I began preparing for the news of a second Huntington’s disease test.
It was the spring of 1999. A sense of calm and resoluteness overtook me. Most people go through counseling and a specific protocol for getting tested, but I skipped parts of this process. I had my own very effective therapist and, with my experience at the HDSA chapter support group, was already familiar with the issues involved in testing.
We also had a very intelligent, level-headed, experienced, and compassionate geneticist who carefully explained all of the details of the testing process and patiently answered all of our questions. Looking back on it, I think I handled quite well the weeks preceding my test results.
Gathering for the results
The day of the results began like any other, but as we approached the hour its momentousness weighed like a millstone around our necks. My wife, who was my official support person, and I drove to the office where we were to receive the results. We tried to keep an upbeat attitude until the very last minute. She and I sat together on one side of the table, holding hands on the table, while the geneticist and a counselor sat on the other side. My wife was convinced that I would test negative. One of my best friends thought so too. We were looking forward to a celebration and getting on with our lives.
The geneticist this day was very businesslike, objective, and maybe even detached. His job could be very unpleasant, this revealing of a person’s future in few sentences, as if he were reading someone’s palm or tarot cards. He needed to be professional and to maintain a respectful distance. He stated that we were gathered to receive the results of my test. Without pause he began to read the results rather quickly and without hint as to what the results would be.
In Huntington’s disease everything hinges on the number of CAG repeats that a person has on the gene called huntingtin. (CAG repeats refer to the sequence of three nucleotide bases – cytosine, adenine, and guanine, building blocks of DNA – on the DNA molecule.) Everybody has this gene, but it usually has only 20 or fewer CAG repeats. My mother had twice as many, and that is what caused her to start having symptoms of HD in her late forties.
When the geneticist read the results for the first allele (an alternate form of a gene, for example, alleles for eye color, hair color, etc.), which came from my father, it was in the normal range. I gained a great sense of expectation, and I could sense that my wife was beginning to let out a sigh of relief.
All we needed to hear was the number “20” one more time.
The reading for the second allele, which came from my mother, was …
…
40.
Everything changes
40. It is a number stamped in our memories and in every cell of my body, slowly but surely wreaking havoc in my brain cells and leading to the moment when I will become like my mother.
40. It’s part of the primer we give to people unfamiliar with HD.
40. It’s like a code for everything my wife and I have discussed and suffered over the past eleven years of dealing with HD.
40. Would the child we wanted also have to live with this number, or, because I was a man, an even higher one?
40. I was almost at that age, the prime of a typical adulthood, but mine was not to be that.
After hearing the results, we were speechless and suddenly drained of energy. It reminds me of the day my childhood best friend died in a car accident just days before his high school graduation. I collapsed in a chair and cried.
On that day in 1999, we were clearly shaken. I am a very careful driver, but as I pulled our new car out of the space in the parking garage, I unintentionally scraped the right front fender against a column. My wife became scared. We had just learned that I could die of a debilitating brain disease, and here, out of fear and anxiety, I was already acting erratically.
But we did not cry. We remained determined to move ahead with our lives and our plans to start a family.
Moving forward
The geneticist had helped a lot by leaving us with words he would repeat on other occasions: “a positive test is not a diagnosis for the disease.” I was gene-positive, but I did not yet have any noticeable symptoms. That phrase has often given me hope in moments of fear.
For the next few weeks we solemnly went on with our lives. Like a shaman trying to preserve the life of a patient, my wife filmed me as I spoke about the test results, my fears, and my hopes for the future.
My positive result required us to think about a third HD test. My wife was already pregnant, so we began to make plans for testing the fetus in the womb. In July, however, she had a miscarriage. It was a devastating experience, especially for her, but I have always looked back on it as possibly a fortunate one, because I suspect that baby was positive for HD.
By October of 1999 my wife was pregnant again. We met with the geneticist once again to map out a strategy for testing the fetus.
It was a very complex affair. For fear of losing health coverage in the future or jeopardizing the purchase of other types of insurance, we had not mentioned HD to representatives of my health plan.
A tragic irony
This is one of the great and tragic ironies of living at risk for a devastating brain disease. The insurance one pays for often cannot be used because of the deep fear and very real possibility of suffering discrimination.
Our geneticist worked with the local Huntington’s disease clinic but not our health plan. My HD test was done anonymously at that clinic. But the HD clinic could not conduct the amniocentesis necessary for drawing the genetic material to be used for testing our baby for HD. Luckily, two things worked in our favor. The geneticist had a contact at the health plan, and that person arranged for my wife to have a standard amniocentesis done to check for Down’s syndrome. The lab that tested for this happened to be the same lab where the geneticist worked and tested genetic material for HD, so when the sample came over for Down’s syndrome screening, the geneticist also prepared to test it for HD. The health plan would get the Down’s syndrome results, which were negative, but only we and the geneticist would learn the results of the HD test.
Working around the health bureaucracy was a harrowing experience, but nearly as much as what we now faced. My wife was already sixteen weeks into the pregnancy when the amniocentesis was performed. The HD test, however, would take place only several weeks later, after the lab had been able to grow the genetic material sufficiently so that a reading for Huntington’s disease could be obtained. The results would come when the pregnancy was already nearing the fifth month.
Facing abortion
And what would we do if our little daughter-to-be were positive?
My wife and I had started debating this question even before I received my test results. During the pregnancy it paralyzed her emotionally, because she could not fully commit to a baby whom we might abort because of a positive test for HD. Every night as I put my hand on my wife’s stomach and talked with her about the new life growing inside of her, a wave of fear and uncertainty overtook us.
We are both Catholic and do not like abortion, but we also believe in a family’s right to choose. My wife insisted again that she did not want to take care of two HD patients. If the baby tested positive, she wanted to have an abortion. I understood her concerns but wanted us to await the results first.
My result of 40 CAG repeats once again impinged on our lives. I argued that if the baby had 40 repeats like me, we should go ahead with the pregnancy. Why should we deny life to a child who would probably live as long as I had, then 39, without symptoms? Surely, I argued, treatments or even a cure would be found by the time she grew up.
But my 40 could become our daughter’s 41 or more. With each additional repeat, the likelihood of an earlier onset and a harsher version of the disease increased. For weeks we debated what number would become our maximum tolerance of risk. I would accept anything in the low forties, which was the likely outcome. But my wife kept worrying about the doubt that would exist about our daughter’s health.
The horrifying thoughts of the abortion itself traumatized us more than anything else. The middle of the second trimester was awfully close to viability. My wife would have to undergo an operation and spend at least one night in the hospital. We knew this experience would scar us for the rest of our lives, and maybe for eternity.
Living with uncertainty
We continued our lives as best we could, but HD once again dampened our holiday spirit. Each night my wife and I held hands in bed, and I kept my other hand over her growing belly. Very soon we expected the baby to start kicking.
To get my results we had traveled to the HD clinic. This time we wanted to be alone at home, so the geneticist agreed to call us on the phone with the results.
He called on the evening of January 28, 2000. I got on the phone in one room, and my wife got on the extension in the other room. This time I noticed his voice was more upbeat, offering a sense of anticipation.
“Your child has tested negative,” he said.
I thanked him more enthusiastically then I had ever thanked anybody before.
It is no wonder that each year we send him a family Christmas card.
As soon as we got off the phone, my wife and I fell into each other’s arms on the couch and cried with relief. Aside from the day of our daughter’s birth, it was the happiest moment of our lives.
She became our “miracle baby.” I would someday fall victim to HD, but she would not, forever wiping HD’s horrible legacy from our family tree. Now each day, as I watch her grow, I delight in my daughter. If I ever think about her and HD in the same context, it is not about her suffering, but about her seeing me become like her grandma.
Maintaining a positive attitude
To answer Angela F.’s question, there’s a lot we have done to pull our lives back together after Huntington’s disease entered the picture, and the stories I’ve related are just a part of it.
It is not true that there is nothing to be done. Every moment is a challenge. Big decisions are frequent. Along the way we have taken control over our lives as much as possible. HD is there, but at least we know our enemy and can try to fight it through activism, research, and maintaining a positive attitude.
Sunday, November 19, 2006
Friday, October 27, 2006
Mourning mom
It has been almost nine months since I’ve written in this blog. Last March I began to write the following:
My mother died in her sleep on February 13.
So ended 15 years of struggle with Huntington’s disease.
I still cannot believe that she is dead.
But in many ways she had already died long before February 13. The dementia of HD had slowly but inexorably done away with her ability to communicate and to lead a normal life.
Seeing her in the casket at the funeral home, I could not cry. She seemed to still be with us. Only after the wake, when the time neared for the lid to be closed, did I finally break down.
In some ways my mother’s death was a relief. HD had dehumanized her. That’s why we had decided against connecting her stomach to a feeding tube. Her suffering has ended. Indeed, in death she had a look of peace on her face.
I am tired of thinking of Huntington’s disease, this threat from my genes that taunts me every day but has yet to manifest itself.
Now that Mom is gone, I am preparing myself to renew my energies for the continuing battle to find a cure.
After I wrote that – which I did not post to this site – I could not bring myself to write again. Starting around that time, and extending into May, I went into a dual spiral of anxiety and depression.
I also went into denial about my mother’s death and Huntington’s disease, especially because I had traveled home to see her just a couple weeks before her death. At the nursing home I squirmed with fear as I looked into the genetic mirror that revealed the symptoms and decay that I myself likely will experience in the not-too-distant future, because I too have tested positive for HD.
I badly needed a break from HD, and staying away from this blog has been part of that process.
Without realizing it, I began to take on the symptoms of an HD person. The littlest of tasks became like mountains to climb, and thinking about bigger responsibilities and plans terrified me. Whenever I became anxious, I started to rock back and forth on my feet or bow my head ever more quickly and ever closer to the floor. My hands fidgeted too. My wife had to keep telling me to get a hold of myself. I simply didn’t know how I was going to get through the next minute, let alone the next day, week, or month. I couldn’t enjoy anything. I rocked back and forth even when playing with my daughter, although I tried to do it only when she wasn’t looking.
I was acting out my feelings of doom. Seeing my mother in such a horrible state before her death drove home more than ever the utter destruction wrought by the disease and the inevitability of its arrival in my own body. On a deep level I was convinced that I would get this disease.
On another level I was identifying with my mother by taking on her suffering. This was my way of being close to her in death. I was her son, I had inherited her gene-positive status, and now I would be just like her.
I also felt guilty about her death. Why had I not visited her more often? Why did I often ignore her when I was in the same room with her? Could I have done more to save her? I began to ask myself these questions in the months following her death and realized that avoiding her was a way of repressing my own fears about the disease. Maybe I deserved to get HD.
And I was struggling to come to terms with death itself – not death as most people think of it, but death in one of the most excruciatingly painful ways imaginable, dragged out over many years and pronounced to oneself and to everybody else as the HD-stricken adult disintegrates into a creature more helpless than a toddler, incontinent, unable to swallow, speechless.
I don’t know how I got to the month of June without totally breaking down. Luckily, I got on some new medications for anxiety and depression. They helped enormously, and now I feel better than I have felt in years.
Denial has helped, as well. For many months after my crisis I have simply blocked out of my mind the possibility that I am gene-positive for HD. I stopped fantasizing about symptoms. I stopped worrying about when I would get sick. I tried to live in the moment as best I could.
I also started taking time out to enjoy life. In July we splurged and went on a week-long family cruise to Alaska. Seeing whales, eagles, green mountains, fjords, and glaciers calmed me and renewed my spirits. Being at one with nature made my worries and the death of my mother seem less ominous. Lately I have been thinking that my fate with HD is just another act of nature, part of the grand mystery of God and the universe.
Above all the trip was important because my dad came with us. He was crying every day about my mom. He wondered what he was going to do with his life, and he talked about how he would soon join her. Even though HD had destroyed her mind, she had been his companion. As he kept reminding me, 48 years with a person was a very long time. He’s 79.
The trip got his mind off of mom and focused on the living members of his family, especially his granddaughter. At six, she now has an understanding relationship with her grandfather. When my wife asked her if she wanted to see grandma in the casket, my daughter said yes. She stared for a long time. It was the first time she saw a dead person. She attended the funeral, laid a flower on the casket at the cemetery, and witnessed the pain of all of us. She clearly made the connection between Huntington’s disease and death. At our home and on the cruise ship she saw her grandfather without his spouse. She held his hand and in her own special way helped draw him out of himself and his suffering.
It was also a time for my father and me to bond again. We shared a room for the first time in more than twenty years. He watched me take supplements that I hope will delay the onset of HD. After so many years of focusing on my mother, for the first time he has realized that this disease can affect me too.
As fall sets in and the first holiday season without my mom approaches, we are back at the routine of life. My daughter is in first grade, and my wife and I are in full swing at work. My dad visits his doctors, goes to weekly Mass, helps the neighbors, and feeds the squirrels and birds that appear in his yard.
And we are all girding ourselves for the next battle with HD: a father wondering whether his son will follow in the footsteps of his spouse, a wife worrying about raising a child and caring at the same time for a sick husband, a daughter reassuring herself that all will be okay with her parents.
And I, taking many months to get up the courage to write again, am finally coming to grips with the death of my mother at the hands of Huntington’s disease.
My mother died in her sleep on February 13.
So ended 15 years of struggle with Huntington’s disease.
I still cannot believe that she is dead.
But in many ways she had already died long before February 13. The dementia of HD had slowly but inexorably done away with her ability to communicate and to lead a normal life.
Seeing her in the casket at the funeral home, I could not cry. She seemed to still be with us. Only after the wake, when the time neared for the lid to be closed, did I finally break down.
In some ways my mother’s death was a relief. HD had dehumanized her. That’s why we had decided against connecting her stomach to a feeding tube. Her suffering has ended. Indeed, in death she had a look of peace on her face.
I am tired of thinking of Huntington’s disease, this threat from my genes that taunts me every day but has yet to manifest itself.
Now that Mom is gone, I am preparing myself to renew my energies for the continuing battle to find a cure.
After I wrote that – which I did not post to this site – I could not bring myself to write again. Starting around that time, and extending into May, I went into a dual spiral of anxiety and depression.
I also went into denial about my mother’s death and Huntington’s disease, especially because I had traveled home to see her just a couple weeks before her death. At the nursing home I squirmed with fear as I looked into the genetic mirror that revealed the symptoms and decay that I myself likely will experience in the not-too-distant future, because I too have tested positive for HD.
I badly needed a break from HD, and staying away from this blog has been part of that process.
Without realizing it, I began to take on the symptoms of an HD person. The littlest of tasks became like mountains to climb, and thinking about bigger responsibilities and plans terrified me. Whenever I became anxious, I started to rock back and forth on my feet or bow my head ever more quickly and ever closer to the floor. My hands fidgeted too. My wife had to keep telling me to get a hold of myself. I simply didn’t know how I was going to get through the next minute, let alone the next day, week, or month. I couldn’t enjoy anything. I rocked back and forth even when playing with my daughter, although I tried to do it only when she wasn’t looking.
I was acting out my feelings of doom. Seeing my mother in such a horrible state before her death drove home more than ever the utter destruction wrought by the disease and the inevitability of its arrival in my own body. On a deep level I was convinced that I would get this disease.
On another level I was identifying with my mother by taking on her suffering. This was my way of being close to her in death. I was her son, I had inherited her gene-positive status, and now I would be just like her.
I also felt guilty about her death. Why had I not visited her more often? Why did I often ignore her when I was in the same room with her? Could I have done more to save her? I began to ask myself these questions in the months following her death and realized that avoiding her was a way of repressing my own fears about the disease. Maybe I deserved to get HD.
And I was struggling to come to terms with death itself – not death as most people think of it, but death in one of the most excruciatingly painful ways imaginable, dragged out over many years and pronounced to oneself and to everybody else as the HD-stricken adult disintegrates into a creature more helpless than a toddler, incontinent, unable to swallow, speechless.
I don’t know how I got to the month of June without totally breaking down. Luckily, I got on some new medications for anxiety and depression. They helped enormously, and now I feel better than I have felt in years.
Denial has helped, as well. For many months after my crisis I have simply blocked out of my mind the possibility that I am gene-positive for HD. I stopped fantasizing about symptoms. I stopped worrying about when I would get sick. I tried to live in the moment as best I could.
I also started taking time out to enjoy life. In July we splurged and went on a week-long family cruise to Alaska. Seeing whales, eagles, green mountains, fjords, and glaciers calmed me and renewed my spirits. Being at one with nature made my worries and the death of my mother seem less ominous. Lately I have been thinking that my fate with HD is just another act of nature, part of the grand mystery of God and the universe.
Above all the trip was important because my dad came with us. He was crying every day about my mom. He wondered what he was going to do with his life, and he talked about how he would soon join her. Even though HD had destroyed her mind, she had been his companion. As he kept reminding me, 48 years with a person was a very long time. He’s 79.
The trip got his mind off of mom and focused on the living members of his family, especially his granddaughter. At six, she now has an understanding relationship with her grandfather. When my wife asked her if she wanted to see grandma in the casket, my daughter said yes. She stared for a long time. It was the first time she saw a dead person. She attended the funeral, laid a flower on the casket at the cemetery, and witnessed the pain of all of us. She clearly made the connection between Huntington’s disease and death. At our home and on the cruise ship she saw her grandfather without his spouse. She held his hand and in her own special way helped draw him out of himself and his suffering.
It was also a time for my father and me to bond again. We shared a room for the first time in more than twenty years. He watched me take supplements that I hope will delay the onset of HD. After so many years of focusing on my mother, for the first time he has realized that this disease can affect me too.
As fall sets in and the first holiday season without my mom approaches, we are back at the routine of life. My daughter is in first grade, and my wife and I are in full swing at work. My dad visits his doctors, goes to weekly Mass, helps the neighbors, and feeds the squirrels and birds that appear in his yard.
And we are all girding ourselves for the next battle with HD: a father wondering whether his son will follow in the footsteps of his spouse, a wife worrying about raising a child and caring at the same time for a sick husband, a daughter reassuring herself that all will be okay with her parents.
And I, taking many months to get up the courage to write again, am finally coming to grips with the death of my mother at the hands of Huntington’s disease.
Wednesday, February 01, 2006
Saying good-bye to Mom
My father decided last week that he did not want my mother, who has had Huntington’s disease for about 15 years, to have a feeding tube. My sister and I reluctantly agreed. Mom can no longer swallow properly – one of the final symptoms of HD before death. She runs the risk of taking food into her lungs. My father and my sister contacted a hospice, which will assist with my mother’s care until her death, attempting to make her passing as painless and as comfortable as possible.
On Thursday night I called the nursing home where my mother is living. The nurse suggested that I visit as soon as possible, because death could come quickly. Mom has had two incidents of serious dehydration in the past couple weeks and, without a feeding tube connected to her stomach, she might not last much longer. The nurse bluntly revealed an emotional bombshell: Mom had said that she was “not afraid to die.”
I decided to travel on Friday for a weekend trip to my hometown to visit Mom for what could be the last time. I dropped everything I was doing, frantically packed, and reserved a last-minute flight. Throughout the long, emotionally-draining trip across the country I could not stop thinking about our family’s decision about the feeding tube, my Mom’s illness, and my own at-risk status.
After my father and sister picked me up at the airport and we got a quick dinner on Friday night, Dad and I drove to the nursing home. I insisted that we go, even though it was already a couple of hours past her bedtime. I had come on a mission to see Mom, and I did not want anything to prevent me from doing so. My adrenalin flowed as I braced myself for what I knew would be a depressing scene in the nursing home.
Mom was asleep when we entered the room. She lay in a simple bed with two railings to stop her from falling out. On the other side of a curtain slept another woman, a paraplegic who can only whisper her words. But, as if Mom sensed our presence, she suddenly awoke. I bent down over her in the dark and asked her if she knew who I was.
Mom did not recognize me. At first she referred to me as her “husband,” then as “Grandpa.” HD-driven dementia has clearly taken its final toll on her mind. When I saw her nearly a year ago, she had no difficulties in recognizing me. Only a couple times throughout the nearly six hours that I spent by her side over the weekend did she really seem to understand who I was.
I hugged her and kissed her and then bade her good night, as we would be returning to see her again the next day.
That night I dreamt nervously of visiting Mom and walking through the somber halls of the nursing home.
On Saturday we arrived around 12:30. Mom was sitting in the hallway in a special padded lounge chair provided by the hospice. Dad called it the “Cadillac,” because it was much nicer than the chair she had used earlier, and certainly more comfortable than a wheelchair. It had wheels, so we could roll Mom around the nursing home.
Mom again had trouble recognizing me. She just sat immobile in the chair, turning only her head and moving her legs a little from time to time.
But when I showed Mom a picture of a little girl, she immediately called out her granddaughter’s name. I felt good.
Dozens of times Mom said, “I love you,” to us, to the nursing home personnel, and to the lady who comes to fix her hair, a person who has helped care for her the past eight years. She still understood the essence of life and wanted us to know what she felt for us.
My sister, my dad, and I conversed about HD and my Mom as we contemplated her in the chair. HD people have a hard time focusing their eyesight, but Mom was able to fix her gaze to meet up with mine a number of times. I felt close to her. And I felt as if I were once again looking into a genetic mirror, seeing how I myself could end up if a treatment or cure for HD is not found soon.
That was the most unnerving aspect of the whole visit: having to see Mom in such a deteriorated situation and knowing that I carry the indelible mark of a defective huntingtin gene.
I also learned how difficult her swallowing has become. An aide brought over a glass of water with a thickening agent in it that is supposed to facilitate swallowing. My sister and I patiently helped Mom take sips from the glass. She had difficulty keeping the liquid in her mouth, so we put a towel across her chest. Over ten minutes she barely got down more than an ounce or two.
I now understood why the doctor had extended the possibility of a feeding tube, although we were also told that such a tube was no guarantee that Mom would not get food into her lungs.
Sunday would be the final day of my visit. I wanted to get to the nursing home as early as possible to be able to spend quality time with Mom.
I was very nervous and fidgety, thinking the whole time of how my life could become transformed by my genetic destiny. I kept sitting down and getting up from my chair as I looked at Mom and tried to concentrate on the conversation going on around me.
Mom’s caregiver friend washed, cut, and curled her hair to make her presentable for her visitors.
During the hairdo, an aide came into feed Mom. Because of her inadequate swallowing, she is now getting only “pleasure foods” that ostensibly go down easier. On the tray were a small bowl of mashed potatoes with gravy, some pureed apple pie, a small glass of milk, and a glass of water. Again both liquids contained a thickening agent.
Her swallowing difficulties became even more apparent. The aide had to tell Mom to get ready for each spoonful, then quickly stick it into her mouth, and then massage her throat to help her with swallowing. The aide also had Mom open her mouth to make sure that the food had gone down.
After 45 minutes of patient feeding Mom had eaten only about half her food. She drank most of the milk but practically none of the water.
It was no wonder that she easily became dehydrated.
We then wheeled Mom to a reception room with more comfortable furniture. There we took some pictures.
Then I asked my sister and father to leave the room briefly so that I could say my final farewell to Mom.
I told Mom that I was saying goodbye and that I might not see her again. I told her what an excellent mother she had been, and I apologized for all the times that I had not been the best of sons.
I looked her in the eyes.
I hugged and kissed her.
I put her hand on top of mine on top of the tray that was part of her special chair.
I told her I loved her. She said she loved me too.
In the past couple days Mom had not moved her hands at all. When we asked her to point out things, she had been unresponsive. But then, inexplicably, Mom started to move her left hand upwards. Slowly it moved until it touched my face.
I took her hand and pressed it against my face.
Miraculously we had touched each other’s hearts.
I felt a warm glow of love and relief.
Now, back home, I have nagging feelings about the feeding tube. Are we doing the right thing? Mom could be gone in a flash, whereas the tube might give her months or even years more. The problem is that it is all unpredictable. I am anguished and disturbed at the thought of her dying.
But part of me has a sense of peace. It was good to become close to my mother again. For so many years the dementia prevented her from expressing her feelings, and my fear of HD kept me from sitting down with her and attempting to converse.
At least we were able to say good-bye.
On Thursday night I called the nursing home where my mother is living. The nurse suggested that I visit as soon as possible, because death could come quickly. Mom has had two incidents of serious dehydration in the past couple weeks and, without a feeding tube connected to her stomach, she might not last much longer. The nurse bluntly revealed an emotional bombshell: Mom had said that she was “not afraid to die.”
I decided to travel on Friday for a weekend trip to my hometown to visit Mom for what could be the last time. I dropped everything I was doing, frantically packed, and reserved a last-minute flight. Throughout the long, emotionally-draining trip across the country I could not stop thinking about our family’s decision about the feeding tube, my Mom’s illness, and my own at-risk status.
After my father and sister picked me up at the airport and we got a quick dinner on Friday night, Dad and I drove to the nursing home. I insisted that we go, even though it was already a couple of hours past her bedtime. I had come on a mission to see Mom, and I did not want anything to prevent me from doing so. My adrenalin flowed as I braced myself for what I knew would be a depressing scene in the nursing home.
Mom was asleep when we entered the room. She lay in a simple bed with two railings to stop her from falling out. On the other side of a curtain slept another woman, a paraplegic who can only whisper her words. But, as if Mom sensed our presence, she suddenly awoke. I bent down over her in the dark and asked her if she knew who I was.
Mom did not recognize me. At first she referred to me as her “husband,” then as “Grandpa.” HD-driven dementia has clearly taken its final toll on her mind. When I saw her nearly a year ago, she had no difficulties in recognizing me. Only a couple times throughout the nearly six hours that I spent by her side over the weekend did she really seem to understand who I was.
I hugged her and kissed her and then bade her good night, as we would be returning to see her again the next day.
That night I dreamt nervously of visiting Mom and walking through the somber halls of the nursing home.
On Saturday we arrived around 12:30. Mom was sitting in the hallway in a special padded lounge chair provided by the hospice. Dad called it the “Cadillac,” because it was much nicer than the chair she had used earlier, and certainly more comfortable than a wheelchair. It had wheels, so we could roll Mom around the nursing home.
Mom again had trouble recognizing me. She just sat immobile in the chair, turning only her head and moving her legs a little from time to time.
But when I showed Mom a picture of a little girl, she immediately called out her granddaughter’s name. I felt good.
Dozens of times Mom said, “I love you,” to us, to the nursing home personnel, and to the lady who comes to fix her hair, a person who has helped care for her the past eight years. She still understood the essence of life and wanted us to know what she felt for us.
My sister, my dad, and I conversed about HD and my Mom as we contemplated her in the chair. HD people have a hard time focusing their eyesight, but Mom was able to fix her gaze to meet up with mine a number of times. I felt close to her. And I felt as if I were once again looking into a genetic mirror, seeing how I myself could end up if a treatment or cure for HD is not found soon.
That was the most unnerving aspect of the whole visit: having to see Mom in such a deteriorated situation and knowing that I carry the indelible mark of a defective huntingtin gene.
I also learned how difficult her swallowing has become. An aide brought over a glass of water with a thickening agent in it that is supposed to facilitate swallowing. My sister and I patiently helped Mom take sips from the glass. She had difficulty keeping the liquid in her mouth, so we put a towel across her chest. Over ten minutes she barely got down more than an ounce or two.
I now understood why the doctor had extended the possibility of a feeding tube, although we were also told that such a tube was no guarantee that Mom would not get food into her lungs.
Sunday would be the final day of my visit. I wanted to get to the nursing home as early as possible to be able to spend quality time with Mom.
I was very nervous and fidgety, thinking the whole time of how my life could become transformed by my genetic destiny. I kept sitting down and getting up from my chair as I looked at Mom and tried to concentrate on the conversation going on around me.
Mom’s caregiver friend washed, cut, and curled her hair to make her presentable for her visitors.
During the hairdo, an aide came into feed Mom. Because of her inadequate swallowing, she is now getting only “pleasure foods” that ostensibly go down easier. On the tray were a small bowl of mashed potatoes with gravy, some pureed apple pie, a small glass of milk, and a glass of water. Again both liquids contained a thickening agent.
Her swallowing difficulties became even more apparent. The aide had to tell Mom to get ready for each spoonful, then quickly stick it into her mouth, and then massage her throat to help her with swallowing. The aide also had Mom open her mouth to make sure that the food had gone down.
After 45 minutes of patient feeding Mom had eaten only about half her food. She drank most of the milk but practically none of the water.
It was no wonder that she easily became dehydrated.
We then wheeled Mom to a reception room with more comfortable furniture. There we took some pictures.
Then I asked my sister and father to leave the room briefly so that I could say my final farewell to Mom.
I told Mom that I was saying goodbye and that I might not see her again. I told her what an excellent mother she had been, and I apologized for all the times that I had not been the best of sons.
I looked her in the eyes.
I hugged and kissed her.
I put her hand on top of mine on top of the tray that was part of her special chair.
I told her I loved her. She said she loved me too.
In the past couple days Mom had not moved her hands at all. When we asked her to point out things, she had been unresponsive. But then, inexplicably, Mom started to move her left hand upwards. Slowly it moved until it touched my face.
I took her hand and pressed it against my face.
Miraculously we had touched each other’s hearts.
I felt a warm glow of love and relief.
Now, back home, I have nagging feelings about the feeding tube. Are we doing the right thing? Mom could be gone in a flash, whereas the tube might give her months or even years more. The problem is that it is all unpredictable. I am anguished and disturbed at the thought of her dying.
But part of me has a sense of peace. It was good to become close to my mother again. For so many years the dementia prevented her from expressing her feelings, and my fear of HD kept me from sitting down with her and attempting to converse.
At least we were able to say good-bye.
Thursday, January 26, 2006
Should Mom get a feeding tube?
My HD-stricken mother was rushed from her nursing home to the emergency room last week because of dehydration. She spent almost a week there. The hospital staff also found a urinary tract infection.
As is typical with late-stage HD, my mother can no longer eat normally. The food gets into her windpipe, causing her to spit it out.
As I write she is on intravenous fluids because of another crisis of dehydration. She is in good spirits and still smiles when my dad and sister come to visit her.
But the nursing home people say that it’s no longer possible to feed her through her mouth. She also cannot swallow her medications, which are necessary for alleviating the symptoms of HD such as chorea, or shaking.
My dad , my sister, and I now face one of the most difficult decisions we will ever make: should Mom get a feeding tube connected to her stomach?
It may be the only way to save her life.
But it would prolong her decline into the abyss of Huntington’s disease. We don’t want a Terry Schiavo-like situation, where Mom simply vegetates.
But we recognize that, despite HD’s devastation, she maintains a part of her humanity.
Her living will says that no heroic efforts should be made to save her. But she signed that in 2000, when HD had already assaulted her with serious dementia. Did she really know what she was assenting to?
How can we possibly know her thoughts now, when she cannot hold the simplest of conversations?
“She still says constantly, ‘I love you,’” my sister told me yesterday. “How could you let that go? That’s what’s bugging me now.”
As the nurses have explained it, “You never no how long someone will live with or without a feeding tube,” my sister added. She could go on for years, or just a few months.
And once the tube is connected, will we then face an even more terrible decision of having to disconnect it?
My dad and sister are scheduled to meet with hospice workers, who will give them the pros and cons of the different scenarios.
But no matter how much information we have, this decision isn’t going to become any easier.
As is typical with late-stage HD, my mother can no longer eat normally. The food gets into her windpipe, causing her to spit it out.
As I write she is on intravenous fluids because of another crisis of dehydration. She is in good spirits and still smiles when my dad and sister come to visit her.
But the nursing home people say that it’s no longer possible to feed her through her mouth. She also cannot swallow her medications, which are necessary for alleviating the symptoms of HD such as chorea, or shaking.
My dad , my sister, and I now face one of the most difficult decisions we will ever make: should Mom get a feeding tube connected to her stomach?
It may be the only way to save her life.
But it would prolong her decline into the abyss of Huntington’s disease. We don’t want a Terry Schiavo-like situation, where Mom simply vegetates.
But we recognize that, despite HD’s devastation, she maintains a part of her humanity.
Her living will says that no heroic efforts should be made to save her. But she signed that in 2000, when HD had already assaulted her with serious dementia. Did she really know what she was assenting to?
How can we possibly know her thoughts now, when she cannot hold the simplest of conversations?
“She still says constantly, ‘I love you,’” my sister told me yesterday. “How could you let that go? That’s what’s bugging me now.”
As the nurses have explained it, “You never no how long someone will live with or without a feeding tube,” my sister added. She could go on for years, or just a few months.
And once the tube is connected, will we then face an even more terrible decision of having to disconnect it?
My dad and sister are scheduled to meet with hospice workers, who will give them the pros and cons of the different scenarios.
But no matter how much information we have, this decision isn’t going to become any easier.
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