1997 was my third year of living ‘at risk’, while dealing with my sister who had Huntington’s. Why, I wonder now, as I lived those years and even when I initially looked back, did it seem such a long time? The only answer I can summon is that time was compacted. We had no more than a minute to digest the information and implications of my sister’s having Huntington’s, than began a series of issues, crises and events that were pathway to the downward progression of her disease.
1997 was a year of big losses for my sister. After my brother-in-law informed her employer after she tested HD+ (who might have otherwise fired her) about her disease, the company (a major banking concern) quite laudably kept her on, offering her time off as needed, a lighter schedule and a position at the most unskilled level of banking operations. She was failing still and I heard about her husband’s ‘telling on her’, and her demotion, in phone calls I did not want to receive. The one thing, she would tell me, that kept her going was the fact that she had vacation time coming in the late spring and was looking forward to ‘our’ trip to Mexico.
Deb lost her driving privileges that year, though not formally. Driving had always been important to her, a symbol of her freedom and independence. There had been concern for some time, but I blissfully ignored, allowing Deb to make the trips up here for her ‘mini-vacations’. On one of those trips, I got in the car with her because she wanted to find an ATM and needed my directions. Never have I been so scared in my life, as when I made that drive with her. I convinced her, after we found the branch of her bank here, to forgo the rest of the excursion and come back with me to get my car. After that we did a round-robin discussion by phone with family members and concluded that one of us should contact the DMV. We did not know that her doctor, aware of her condition should also have been contacted. My sister was so outraged at all of us for going behind her back once again, and then wanting to remove something else from her life. My brother-in-law as usual took the reigns and, as he was an authority figure for her (she had all sorts of obscene nicknames when she referred to him in our conversations, but she did usually obey his mandates). My sister was allowed to drive only certain distances, to the parking lot for her public transportation to work, and later, when she stopped working, to her son’s school and back, and to the grocery store.
1997 was a series of phone calls I did not want to receive. I quit my fun part-time job because my grandson’s free childcare had ended when my daughter graduated from high school. I was, from this point wholly and totally responsible for this little boy, as well as my own two-‘older’ children’. I sometimes let the machine take Deb’s phone calls, and on hearing her messages, waited until I was properly fortified (beer again), to return them. Right after her testing result, she phoned in a suicide threat and this I answered immediately. I later learned that she had done this several other times with her ex-husband (he filed for divorce strictly for financial reasons, leaving her options for care open and himself free of debts she might run up as she was fairly indiscriminate in her spending). My brother-in-law had raced from his job in the City, to be at her side, when my sister called to say she was going to kill herself.
I had no answers for the suicidal threats. “Don’t do it because cure is right around the corner?” My research to date indicated no such thing. “Don’t do it because we need you, your son needs you.” Ah, that was better, but not what her sorrow, quickly turned to rage, demanded. Mexico, was the cure and so I sang along with her upswing of mood when it came to talking up this trip.
There were other calls, not from Deb herself, where she had gone out to the store and was missing, hours later. We would call each other back and forth and then finally, as I was putting my children to bed, I would learn that Deb had gotten lost, been ‘found’ by the police and when she refused to release her because she still wouldn’t speak her ‘disease’, they held her until her ex-husband, whom they had called on her behalf, came for her. One other call, most disturbing, came from my brother-in-law, then Deb herself, both wanting to know if my nephew had called or arrived up here, as he had gone missing. He eventually showed up that particular night.
Deb went to a travel agent and booked our Mexico trip, and then called me. She gave me the dates and the price for my ‘half’ and I set up gentle warnings. I had recently gone back to my part-time job, weekends only (while my husband was here to care for the kids). My older daughter was working and I didn’t think any of us could get the time off for that particular week. Deb would not listen and simply told me to work it out. When I could not do that, she raged at me like never before.
I deserved that rage. I had been using the Mexico vacation to divert her rage, depression and other crisis calls. And, though my reasons for not being able to go were factual, the truth was that I could not see myself surviving a week along with my sister in a foreign country. I saw myself ‘babysitting’ in the extreme and worse, much worse. Deb was terribly unsteady on her feet, her movements, and her facial contortions, her deteriorating memory and communication skills were all things I barely managed in our visits on home turf. I was, in fact, embarrassed and terrified when I was around her.
My brother-in-law called after my sister called HIM, expressing extreme distress over my backing out on the vacation. My husband and I had already worked out that we would pay ‘my half’ of the trip if my nephew would accompany his mom, but after I explained this, the conversation continued. My brother-in-law, who had been losing time from work because of my sister’s distress calls, who had taken her to all of her appointments, who was attending a support group himself and trying to get her into one, had an agenda...and its expression was well overdue. He wanted to know why my younger sister and I were not helping to care for Deb. My younger sister was exempted because of her divorce situation and condemned lightly for her non-participation. I, on the other hand, was not so fortunate. My brother-in-law wanted to have his son, my nephew move in with him and to have my sister move up here and stay with me. For the first time I played the card I’d never expected to use. “I am at-risk for this disease, too. How can I take care of my sister, when in a few years, I might be the one needing care taking, too?”
The situation got very nasty. My sister and nephew did take the trip, but after the phone calls regarding it, there was an estrangement. I tried calling my sister after her vacation but she wouldn’t speak with me and when I reached my nephew he said that his dad said he couldn’t talk to me.
I suppose a part of me was relieved at the break was Huntington’s Disease. I could pretend while not in contact with my sister, that it did not exist at all. I did miss her and I missed the way she and her son had, barring our estrangement periods, constantly been part of each other’s lives.
In August of 1997, we got a Saint Bernard puppy. He was huge and cute and I sent pictures and a letter to my sister telling her about him. She phoned right after receiving this and we went down to get her the following weekend, to bring her up here for a visit. Deb had stopped working and was receiving disability, so she was home and we spoke on the phone every morning on days I was not working. In October of 1997, we got a second Saint Bernard puppy, a girl this time and Deb couldn’t wait to come up and see her. I credit those dogs for bringing my sister back into my life.
The holidays arrived. Deb and my nephew came up for Thanksgiving, but unlike all other bygone years, she stayed an entire week after while her son went to stay with my other sister because he had school. When I did my Christmas shopping that year, I took great pains to find gifts for Deb, searching for what I thought she would like and would bring her joy. She came up Christmas morning, complaining that the gifts her in-laws, my brother-in-law’s family who loved her dearly, had given her were all juvenile and insulting (hair clips, cartoon character tee shirts). Immediately, I removed the Mickey Mouse sweatshirt I’d gotten Deb, from under our tree. She seemed to like her gifts and enjoy the day and it’s funny, but I still wear that Mickey Mouse shirt, myself, today.
Deb and my nephew stayed over the entire Christmas break. I had to fortify myself with alcohol more times than I’d like to recall, but she liked beer too, so there was my excuse. Deb was in the habit, this past year, of going to bed quite early, watching a movie or two after dinner and then retiring for the night. I embraced those hours, after 10:00 p.m. when I could play games with the kids and joke with them, balance, once again, my normal against her not.
We did have a night, just ahead of New Year’s Eve, where Deb and I were drinking as we played board games with the older kids. Deb was having a terribly difficult time with the Trivial Pursuit-type games, and getting frustrated, so we went to the garage to smoke and talk. I watched the ashes of her cigarette as they dangled, precipitously in the air while she waved her arm around. I could not keep up with the conversation and reached for another beer instead, only to discover that we had run out. Deb wanted to get more beer then and I told her I could not drive because I had consumed too many. She came inside and asked my husband who was in the middle of a game with the kids, to take her to the store. He refused and she grabbed her purse, angrily and said she would walk. He angrily relented then and took her to the store.
While my sister was gone I had the unprecedented, unequaled candid conversation with my nephew. He sat with me in the garage where exists the only privacy in our crowded household, and told me about life with his mom. He said that one of his former friends from school, after watching his mom who picked him up each day, had asked, “What’s wrong with her? Why is your mom so weird?” My nephew punched him. Then my nephew told me about the night he ‘ran away’, the time I’d gotten all the frantic phone calls because no one knew his whereabouts. He was angry because his mom had yelled at him about not cleaning up or something. He had an ATM card (furnished by his dad) and he walked to the grocery store a half-mile away, bought three bags of groceries and walked them back home. I felt so privileged to peer into a part of his soul, a thing that has not happened since.