Today is my mother’s 68th Birthday. She lives in a nursing home near me and is in the final, agonizing stages of Huntington’s Disease. When I called her, to wish her happy birthday, she was really happy. She “didn’t remember it was (her) birthday, but she was glad to hear (my) voice.” She’s been in the nursing home since she was 64 and has been unable to fully care for herself for nearly 6 years now. That is far too young to be living like this, but then, there is nothing fair about Huntington’s Disease. It’s a heartless, kick you in the head, genetic disease (called by many scientists “The most devastating genetic disease known”), that does not discriminate and is devastating for everyone involved. If you have the gene: you will get the disease, you will get sick and you will die a horrible death. There are no maybes. All of your children, will have a 50/50 chance of getting it as well. Those are odds that would be much more appealing with say, the lottery. We’d all line up for that ticket! There are no silver linings here, no bright side. Sadly, in my family, we have not had good numbers. My grandmother died of HD; my aunt (mom’s younger sister) died at 49 of it, three years ago; my mother is in the final stages; my younger sister has it and we believe my brother has it. I do not. There is reason to suspect that my great-grandmother and great-uncle had it as well, but it was only diagnosed in our family, when my grandmother, a social dynamo in the community where I grew up, started displaying signs that she had a drinking problem. It was Huntingtons, but is often mis-interpreted as alcoholism, because HD patient frequently appear drunk. She lost her job and some friends, before we all knew what it was.
It has loomed like a dark shadow over us since we got that news. While I get it when people say “you’re so lucky you don’t have it,” it doesn’t always feel or look that way from where I’m sitting. I will not get HD and my children are safe from it (the greatest blessing), but I have watched two people I loved, deeply, die; I am watching my mother wither and disappear daily; I will lose my sister, who I love dearly; I’ll lose my brother, and I will be left to worry alongside my incredible nieces and nephews as they face the decision to get tested (spin that roulette wheel), and grieve for their parents. I will be the keeper of memories. The average age of death from HD is 51-57. Lucky? I guess I am lucky that I’ve had my mother and had grandmother longer than that, but some days, frankly, that doesn’t feel so lucky either. Sitting with my mom and repeating each question, each thought and not knowing which days she gets it; which days she can’t remember that she has a grandson named Middle Man (we use his real name with her!); which days (recently) when she is anxiously waiting for a helicopter to arrive and which days she will tell me she misses me and would like to go out, something that happens less and less. Which days will I feel compassion and handle this well, and with grace, and which days will I resent her for not answering or get frustrated that she can’t buckle her seat belt and I have to get out and help her.
My mom was 19 when she had me, an age that now seems younger than I can actually imagine, for having a child. My daughter is 21 and I can no more imagine her a mother than I could imagine me a grandmother. In 1963 it wasn’t that unusual, but mom was still young… considering that many of her peers were getting involved in the Civil Rights Movement, becoming hippies or just watching the world change. My mom fell in love with a handsome boy: “wearing a beautiful camel colored sweater, loafers and standing across the bar from (her),” got pregnant, dropped out of college and started her life as a young mother. In a life that, frankly, has had an awful lot of tragedies and unfair sadness, she once told me that meeting my father and having me was one of the happiest times of her life. Pictures from that time show two very young people, with an orange haired little girl, who was always surrounded by people who loved her. My parents look happy in those pictures, and for a while they were. (My mother, very pregnant with my sister; my dad, in a camel colored sweater; my grandparents and aunt, and my brother with balloons. Circa 1968. My mother was 25.—>)
That didn’t last however, and my mother was a widow by 28, with three small children… me being the oldest, at ten. She worked hard to make her life one that she thought had meaning, though that was defined by things that I felt then, and feel even more now, were neither tangible nor affirming. She wanted the nice car, the fancy trips and things… it meant something to her: that she’d arrived or was successful. But those things were often fleeting and when lost, left her feeling unfulfilled and worthless. She wasn’t worthless, but she seemed to chase an image that didn’t mirror reality. In the small town where I grew up, my mom felt that looking well-off meant something, while early on I realized that it only made you look like you didn’t fit in. She didn’t fit in but she just kept spinning her (sleek Black Thunderbird) wheels. She chased after an illusive something that would make her feel like she was worth noticing, that she was better than her true finances and means were. As a kid, I watched my single mom with a fancy car, her own business (that she could barely hold on to) and stylish clothes that were better suited to a city, in a town where large families with middle class values prevailed. Silently, I wished we could just blend in. Her sadness, her drive to be shiny and different, and her palpable inability to be happy were a mystery to me, one that I wanted to solve … and then fix.
That was my role as oldest child: my mother’s partner, other parent to my siblings, fixer of all things. It’s taken me a very long time (way too f’ing long) to figure out that not all things can or should be fixed and that I can’t always be the one to do it anyway. As a kid however, I just wanted to see my mom happy, really happy. Later, I would truly understand the depths of her struggle and that the scars from her childhood and youth, followed her and left her feeling unlovable, helpless and hopeless sometimes, but as a kid, I just wanted to make it better and see her smile. And let me paint this picture with all the colors that apply; it wasn’t all grays and blacks. Mom could also be vibrantly full of reds, blues, greens and yellows. My mom had a wicked sense of humor and had a silly and playful side that made her the life of many of our (extended) family gatherings. She was a beautiful dancer and definitely passed on her love of music to all three of her children. I can still remember hearing the Woodstock album, on an old record player, when I was only nine. She loved Barbara Streisand, Jane Oliver (one of her favorite songs, appropriately), especially drawn to those beautifully sad songs that she probably connected to because she felt that way herself. I didn’t know that then, but I knew that my mother was always listening to music. For a while, she would play the piano for us and I would sit there listening, rapt that my mother could make such stirring music. When my grandmother gave away the piano, I never heard her play again, nor did she express an interest.
She dressed to the nines where ever she went, and she made us do the same. I longed to wear Levi’s straight leg chords, like all the other girls, but she insisted on gauchos and outfits that I thought were better suited to the models in the magazines she read. When she finally let me buy my first pair of powder blue Levis, I walked in stiffly, the tight chords rubbing together, and she said: “hmm, those look comfortable.” They were horrible, but I wore them just to prove her wrong. They got softer, with about 15 washes. She became a hairdresser and we had every new and conceivable hair cut or style before anyone else. Bouffants for Christmas and pixies when every other girl had long hair. My bright red hair would be twisted, shagged and “ratted” in to all kinds of shapes, and my brother, sister and I thought she was so glamorous for being ahead of the local curves… until we were teens, and then we hated it. Her business, Salon D’Carole (which she thought was elegantly French sounding) was wiped out in the Blizzard of 1978 (<–check out this video), and she soon gave up on our small town and moved with my brother and sister, to Florida. I was a Junior in high school and stayed behind, to break free and stay near my boyfriend, if truth be told.
(<– My sister, Mom and me. Dressed for a wedding, 1986)
She married again, briefly, when I was in Graduate school, but he was a jerk and she was a fool; it didn’t work out. He was very wealthy, and she loved him, but I think that ever-illusive desire to really “make it” blinded her to all his short-comings. Once again, she had chased and fallen into the trap of looking happy (things) versus being happy, for real. Aside from those few years of marriage, she has spent most of her life single. There are so many crooked roads my Mom traveled down, and as I got older and eventually sought a very different outcome for myself and my family, I vacillated between adoration; enmeshment; distance; resentment; anger; righteous indignation; hopefulness; judgement, and eventually, when she was diagnosed with Huntington’s 12 years ago, acceptance: that I would never really see her content and I would never really get to resolve and untangle the enormous ball of emotion that ties us together. (Photo: Just after her diagnosis, Halloween with Principessa, in disguise; Middle Man and Little Man– they adored her!)
She has slipped away from me, from us, in bits and pieces. Her movements are a tipsy turvy crap shoot. When will she break another rib, her back, her hip again? This month alone, it has been three broken ribs, head lacerations, leg and arm injuries and numerous painful bruises and “skin tears.” My sister spent a couple of years living in the same apartment complex, checking in daily and panicking when mom didn’t answer her phone. It was a broken back that landed her in assisted living, finally. Mom’s ability to communicate has slowly disappeared, to the point where most of our phone calls involve me talking into the phone, and occasionally asking her if she’s still there. Our visits are generally her staring at me/us, while I try to manage my frustration and sadness in losing her right before my eyes.
She has become a hugger, as the illness progresses. When we greet her, she wraps her rigid arms around our necks, pulls us close and holds on for life. She often plants wet, loud kisses on our heads or cheeks, that make my kids cringe. They roll their eyes at me as she holds tight, but they know it is the only thing she can still do to tell us she loves us, and they love her back. (<–Mom hugging Little Man, a few years ago, before she was wheel chair bound) This is not something she did before the illness, but now you have to work to get free of the those hugs. Some days I linger a bit longer, but often it is hard not to feel a little suffocated, as if I might catch the disease, or my emotions might be squeezed to the surface. I am aware that lots of emotions are still there, pushed down, and I wonder what will happen when she finally dies and they make their way up. I am working to tame them now, in the hopes that I don’t drown when they bubble up later. Other times, I can see her looking at me and whether or not I just imagine it, I believe I can see her still in there. I may be having an argument with one of my children, or she’ll see me upset, and I can feel her eyes bore into me, as if she is stroking my hair, like she did when I was a teenager and didn’t get asked to dance. Her face still frozen by the HD, but her eyes talking to me.
Once a year, at Christmas, when she agrees to stay over, I wait until she is sleeping and I go to her bedside. When she is sound asleep, her face relaxes and the chorea and tension that the HD brings to her while awake, melts away, and I see my mother: whole and at peace, there before me. I imagine her opening her eyes and talking to me. I want to hold on to that moment as long as possible, knowing that when she actually opens her eyes, she will be gone to me again. It is always brief, but so sweet, when I can see my mother and not her illness.
So today is her birthday. I took her shopping a couple of weeks ago and bought her new clothes. She no longer cares about things, an irony that is not lost on me. The vain woman she once was, who cared about each label and piece of jewelry, each detail, has been replaced by one that often looks like a harried, homeless women: with food stains on her outfits, her hair sticking up and her face confused and lost. She is drawn to the same outfits over and over, regardless of whether there are cleaner, nicer items in her closet. I told her that we would throw out all of the really stained items and she would wear these new ones, and she agreed. So today, I put name tags on each of the things we bought, so that they don’t inadvertently disappear in other nursing home residents’ rooms. These are simple clothes, bought for comfort and easy on and off. She wants to dress herself still, but it is very hard, and often leads to falls. Long gone are the expensive designer names and perfect hair and make up, but now she’ll look clean for a while. I still take her, once a month, for a manicure and pedicure but while she likes her nails to look good, it is more for function now: she needs them short, so she doesn’t scratch her fragile, paper-thin skin. I’ll head over early, to help her put on one of her new outfits and make sure her hair looks nice, for her birthday dinner out.
In this final stage, I have let go of most of the previously unresolved feelings. I am not looking for her to own that she wasn’t really there for me when I was young. I don’t judge her the way I did for so long, or try to work it all out. I see her for what she is: a 68 year old woman who did the best she could, given the true limitations she had. Her life was not easy, and she was barely an adult when she became a mother. That made for lots of possible mistakes, and plenty were made. That was a long time ago. I can’t truthfully say that I don’t still have days when I wish it was all different or resent that it’s not, but mostly I see her for where she is now and I feel love, compassion, release from the past and enormous empathy, for her. My sister and I, and our families are all she has. My brother is far away and unable to be here, for many complex reasons. Her only sibling, her brother, has not called in ten years and they did not speak for several years before that. She didn’t know it was her birthday when she woke up this morning, but she will when we take her out and sing to her. She doesn’t care about material things anymore, so for my gift tonight: I will let her hug me, for as long as she needs to.
Happy Birthday Mom! (<—On her 68th Birthday. The waiter bought her a 2nd drink and it made her very happy! And I took all those old, crappy clothes away and filled her closet with the new ones.)
There’s nothing I can say except that I think you are doing right by your mother. And that’s better than I did for my own mother, honestly. I understand complicated mom relationships and what it’s like to see the end coming from pretty far away (my own mother’s health declined for many years before she died). And I feel a great deal of empathy for your situation. You should be proud of yourself!
Thanks Rebecca. It has been a complicated, twisty road for sure! Letting go of stuff that I wanted to resolve and accepting what I need to… frankly, I feel sure that when she finally dies, it will all come bubbling up, but I’m hoping I’ve tamed it enough by then, that I don’t drown in it. Thanks so much for reading. I truly appreciate your feedback!
Hold your head high and know you are giving your mom the greatest gifts of all when she needs them most– love and time shared. There are many similarities between our stories growing up… my mom did the best she could to hold it together and raise five kids after my parents divorced. It is now Alzheimer’s which has taken hold of her mind. Without a doubt, it is difficult to watch your parent slip away a day at a time and terrifying to worry about what comes tomorrow. Be good to yourself and be strong!
Thanks Sarah. Yes, this is much like Alzheimer’s. I often tell people, when they ask, that HD is like taking Alzheimer’s and Parkinson’s, putting them in a shaker and pouring them over someone… Both are just terrible things for a family to get around. I really appreciate your thoughts and feedback. Same good thoughts to you as well… xox
She is so lucky to have you. You are doing right by your mom. Incredible piece of writing. JM
Thanks JM… not sure she feels lucky most days, but I’m glad she has us! My sister has done so much for her and I do what I can. It sucks no matter how you slice it. Thanks for the feedback. : )
OMG, this was hard to read (through the tears). You brought back so many memories of being around your family, so vividly. And filled in so many blanks that I never knew about. I always saw your mom as a mod-goddess! But I knew the other side, too, through you. LOVE the photos, they speak volumes. This is a novel. I’ve been trying to get my own mom to write a book about her family & mother in particular. Yours would be stunning. Do it!
Thanks Valery! Novel: done, working on final edits. We’ll see if it stands up. I was always grateful to hang out at your “normal” home. 🙂 My mom was a Goddess in many ways, but that’s not always what a kid wants. I didn’t start really figuring out what was not good until late hs and college. Life. Thanks for your wonderful support!
Aha, so I got a hint as to the topic of said novel! Can’t stand the wait!
Good things come to those that wait? 🙂
You are a Saint! Plain and simple. I think I remember the beauty salon in the harbor, but cannot say for sure. Please remind me exactly where it was, which building or next to what, thanks.
I too watched my mother waste away. I know that sounds harsh, but that is what it is, or was I should say. She battled breast cancer for 16 years and lost at the age of 61. Dealing with the demise of a loved one really puts you to the test, it brings out the true you. Hold her tight while you can!
That’s me Saint Dawn. I think most of us do what’s right, and there are few other options. Just the same, thanks for that. I imagine you can understand much of it, having watched your own mom. It’s really a bitch, whatever the diagnosis.
The salon was in the small business “mall”/building one block down from the movie theater. Her shop window looked out on main street, so she was the front, right shop/window. Thanks again for reading the posts and taking the time to share your thoughts. Always appreciated.
Reblogged this on The Huntington's Chronicles and commented:
This is the first post I wrote that addressed Huntington’s. There have been many more since, but when I wrote this one, I had no way of knowing that my mother, Caroled, would be dead three months later. When it came, it was a bitter sweet blessing. In every way.
If Huntington involves excessive production of CAG as cancer involved excess duplication of cells, why wouldn’t chemotherapy be a possibility. I have searched for an answer, it seems there were a few early studies showing some promise but nothing happened. Can’t say this would work but wouldn’t it be a worth a try since the chemotherapy drugs have already been approved and their side effects understood.
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Howard, thanks for checking out my blog and sharing your thoughts. I’m not a researcher or scientist, so I don’t know the answer to the questions/ideas you pose. I’m sure there’s something out there. Thanks for sharing!