Friday, March 25, 2005

Seeing Mom (Part II): a family's emotions

I previously wrote of the terrible difficulties resulting from the way Huntington’s disease has immobilized my mother. During my visit to my parents many other aspects of HD also came into play, producing strong emotional repercussions for the entire family.

A heart patient, my father will soon turn 78. The strain of caring for a person with HD puts him at increased risk for suffering a health crisis. My mother’s continued decline will only make the situation worse. My father is a stoic, but even he is moved to almost crying when my mother falls.

I was the one who ten years ago urged my father to take my mother to a specialist. It took him months to do so. That process led to her diagnosis with HD in 1995, just two years after the discovery of the HD gene made a definitive test for the disease possible. After my father’s emergency triple bypass operation in 1998 I forced him to consider getting part-time in-home help for my mother. After much angry protest at my perceived meddling, he agreed. This visit I once again took the lead by calling an emergency family meeting and getting my father to focus on obtaining additional help in the home or moving my mother to a nursing home.

I could tell that my mother’s worsening condition has softened his resistance: this time he did not protest what could be the biggest change in his life since their marriage in 1957.

The trip once again drove home for me that my mother’s fate could be my own. Looking at her is like looking into a genetic mirror. It is a chilling experience. I especially noticed that her chorea – uncontrollable movements – had worsened since I last saw her in January 2004. Because of my fears, I didn’t get too close to her. The only way I could be in the same room was to deny my own at-risk status and the deep fears associated with it.

As I returned home, I felt the added burden of taking on a new leadership role in the family. From a distance I will need to help with finding the best legal and medical help for my parents. I am inexperienced, and the task feels daunting. The prospect of my mother living alone deeply saddens me.

The visit brought an unexpected reunion with my sister, my only sibling, who had cut off contact with me because I insisted that our family deal more openly with Huntington’s disease and that she help more with my parents, who live nearby. After three years of silence between us I called her to join my father and me in the meeting about our mother. In contrast to our last conversation, which she ended by hanging up on me, my sister thanked me for helping to press my father about our mother’s health. The damage from our falling out may never be repaired, but we now at least have the potential for a businesslike relationship regarding our parents.

The most important, most touching moments involved my daughter’s perceptions of her grandmother. Now four-and-a-half, my daughter consciously hugged her grandparents for the first time. She had fun being with them, and I was happy to see the joy that she brought to them. One time I asked my mother to hug her granddaughter, and, in a gesture that can be considered nearly miraculous for a person at this stage of HD, she moved her hands and arms down and over my daughter’s back.

But more often than not, it was clear HD has devastated my mother’s mind and body. During meals, as I coaxed my rambunctious daughter to eat by spoon-feeding her, across the table my dad cut my mother’s food for her and spoon-fed her too. As my daughter was progressing towards greater social awareness and responsibility, my mother was regressing into a deeper dependence on those around her.

My daughter carefully observed the many ordeals that both her grandparents experienced as Grandpa helped Grandma with feeding, walking, and going to the bathroom. Later she asked about her grandmother’s illness, which I had described as a “boo-boo on Grandma’s brain.” I was deeply proud to hear my daughter’s intelligent inquiries, but I answered her slowly and with great measure.

“When did Grandma get a boo-boo on her brain?” she asked.

“She got it when she was born,” I replied.

“How did Grandma get a boo-boo on her brain?”

“Sometimes people are born with a boo-boo on their brain because things did not go right when they were still inside their mommies’ tummies.”

“Why didn’t Grandma get sick when she was younger?”

“Sometimes a boo-boo takes a long time to develop, to come out.”

“Grandma is going to die from the boo-boo, right? We need to pray so that Grandma gets better. When Grandma dies, there will just be Grandpa.”

“Yes, we need to pray for Grandma.”

“Mommy and Daddy won’t die for a long, long time!” she said to reassure herself.

Luckily, the moment has not yet arrived for my daughter to learn that I, too, am at risk for HD.

And, of course, there were my mother’s emotions. Nobody can know what she really feels and thinks, because HD has stolen her ability to converse. But deep inside her being she struggles to express her desire to be human. If someone smiles at her, she can still smile back. She can also get out some light chuckles. On close contact with my father or with me, my mother uttered one of the few phrases that she can still eke out: “I love you.” She said this about two dozen times during the four days that I was with her and my father.

I asked her, “What do you think of your granddaughter?” She was able to muster a response: “I like her.” For all the sadness and tension that this visit generated, I will at least have this memory of a grandmother admiring and loving her granddaughter.

Thursday, March 24, 2005

Seeing Mom (Part I): falling down

My mother cannot walk anymore.

That was one of the stark outcomes of Huntington’s disease that I witnessed during a four-day visit to my hometown to see her and my father.

When I visited in early 2004, she could still shuffle her way for a few yards. But this time my father had to help her with every step. Each movement was painfully deliberate and slow. Sometimes she used a walker, but it did not help much.

When my father, my four-year-old daughter, and I went to another room for just a minute, my mother got up from her chair. We heard her fall and rushed to check on her. My father nearly broke into tears in a fit of anger and frustration as he bent over her and asked why she had tried to leave the chair on her own. Silenced by HD, she could not explain. She wanted, of course, to be near us. A few seconds later she nearly fell again as my father maneuvered her to a couch.

The next day my father was helping her out the door of a restaurant. Her 160-pound body went twisting to the ground. My dad and I had to help her up and into the car.

The strength and coordination have completely left my mother’s legs, now flimsy as rubber. She can no longer stand on her own two legs, that most basic part of humanity. I had to help my father get my mother in and out of the car and in and out of her wheelchair. Every couple hours my father asked my mother if she needed to use the bathroom. My dad asked people to stand guard at the bathroom door while he and I guided her in, took off her coat, and positioned her in the stall. It took my mother a long time to understand that she should put her hands on the grab bars.

As I looked at my mother, I feared the terrible impact this scene was having on my daughter. I worried about my dad, who struggled to maintain his patience as he gave instructions to my mom in the way he might speak to a child. I was angry and horrified at her total dependence on others for the simplest tasks. She could not even do what a two-year-old could.

Last year my mother broke her wrist after a fall. A couple months ago my mother fell during the night and hit her head on a nightstand. With blood running from her scalp, my father called 9-1-1. At the emergency room she received seven metal staples.

All of this immobility and falling convinced me that next time my mother could die. I had planned this trip as a vacation for my daughter to see her grandparents. But it now took on a different character. I immediately called an emergency family meeting to discuss my mother’s situation. My sister and brother-in-law, who live nearby, and I gently but firmly told my father what was obvious for us but unthinkable for the man who has spent nearly a half century at her side: the time had come to hire full-time help or to put my mother in a nursing home.

The next few months will bring a huge transition in my parents’ lives. First will come the quest for help, so difficult to find because of the lack of awareness about HD and because so many nursing homes are believed to charge exorbitant fees without caring adequately for their clients. Then the financial burden will become enormous as my father, my sister, and I try to figure a way to pay thousands of dollars per month in fees. My mother does not have long-term health care insurance, and Medicaid will not be available until my parents spend a good chunk of their assets. Finally and most serious of all will be the emotional adjustments both of my parents will have to make, either to having strangers in their home or to living separately.

As I said good-bye to them, I realized that it would probably be the last time I would see my mother at home. I imagined seeing her bed-ridden in a cold, impersonal institution, living her final years alone, misunderstood and unloved, away from her husband and no longer able to talk to the son she bore with such affection. The next day the sadness and apprehension about my mother’s future caused me to have several dizzy spells. Huntington’s disease, which has been slowly killing my mother, was victimizing the rest of our family too.

Saturday, March 12, 2005

What is wrong with Grandma?

Because my mother has HD and is incontinent, she can no longer travel on an airplane to visit me and my family. So next week I’m taking my 4-year-old daughter to my home state to see her grandma.

This trip will not be easy.

My mom knows she has a granddaughter, but she cannot talk to her. She cannot play with her or take her to the park or teach her how to sew (an activity she thoroughly enjoyed in her better years). She cannot even hold or hug her.

When we saw my parents in January 2004, my mother spent a good part of the time in a wheelchair. As my daughter romped around the museum and arboretum we visited, my mother simply sat and looked into the distance with the sad stare that seems like a slumber she cannot awake from.

We had to plan our outings based on my mother’s immobility and inability to spend long periods away from home. Moreover, getting in and out of places can be a serious logistical challenge. At the museum my daughter seemed intrigued at the fact that Grandma had to ride a special elevator alongside the stairs. As my daughter watched silently, I wondered what kind of meaning this image was leaving on her impressionable mind.

My daughter has not yet been too inquisitive about my mother. Until now I have simply explained that “Grandma has a boo-boo on her brain.” She understands.

But lately my daughter has been asking big questions. “Why do we have policemen?” she asks. “Why are some people bad?” No longer a toddler, this time my daughter will want to interact more with her grandparents and learn about their lives. I am bracing myself for even more difficult questions about my mother such as “what is wrong with Grandma?” or “why does Grandpa have to feed Grandma?” or “why can’t Grandma play the game with us?”

I don’t want to alarm my daughter about HD, but I also don’t want to shelter her from it. Someday she will have to learn that her very own daddy is at risk for the disease. I’d rather gradually accustom her to the idea than spring it on her suddenly when she’s a teenager.

So as our trip approaches, I am preparing myself to have my first serious conversation with my daughter about HD. It will be particularly wrenching for me because whenever I see my mother, I see what my future could very likely hold for me. I am thankful that for now I won’t have to tell my daughter that her dad could follow in her grandmother’s steps. But I also know that her intelligent mind will continue to form new questions about her family and life. My hope for now is that she can bring some joy to a grandmother who can no longer express such a feeling. And I would like her to have good memories of this trip.

It’s all such a big lesson for such a little girl to learn. And it’s equally hard for her dad to think of how he’s going to help her with it.

Tuesday, March 01, 2005

HD's financial devastation

HD is not just a threat to my health. It colors practically every decision my wife and I make about our finances.

The other night an acquaintance who is a real estate agent suggested to me that we take advantage of the large amount of equity in our home to buy another property, travel, or do anything else that we’ve wanted to do for a long time. My wife and I are still pretty young and in the long run could handle the extra payments on another loan.

It all made sense, I told her, until you factor in my at-risk status. If I become ill in a few years, disability insurance will cover only part of my income, and then only until I reach my mid-60s. The enormous loss in income would put a triple burden on my wife: handling the mortgage in the present, saving more for retirement, and finding money to help pay for my care. In addition, she would be supporting our daughter throughout high school and college. We’re already spending extra money on added insurance to cover my expected illness. And we donate a sizeable amount to HD research each year.

So instead of spending more, each month we pay off an extra $500 of the mortgage principal. We’re thinking of increasing the payment by several hundred more. Our financial advisor, who doesn’t know about HD in our family, urges us to stay in the market for the long haul. But if the stock market rises again, we have vowed to put take the profits out to pay off as much of the mortgage as possible.

Our dream of buying a vacation home has remained just that – a dream. We take short, modest trips. We’ve scaled down our current project of home remodeling.

A couple years ago we turned down a chance to co-sign a loan on a very promising business venture because we feared losing our good credit rating. The more my risk for HD approaches the probability of symptoms, the less we expose ourselves to financial risk.

Whenever we think of money, the question inevitably rises: “What if HD kicks in?”

“If it weren’t for HD” is a regular part of our vocabulary.

HD is like a big “no!” that screams at us every time we think of being adventurous.

Before I learned about HD I had always imagined myself working until well into my 60s and maybe even into my 70s. Now I will consider myself lucky if I can reach age 55. That’s a decade or two of lost income – about a quarter of my working life.

HD is medically –and financially – devastating. We were fortunate enough to learn of my risk early enough to plan for the future. Even so, the consequences are not bright. For families with less warning about HD or with multiple members affected by the disease over one or more generations, financial ruin is a harsh possibility.