I’ve said it before, life is not about fairness; it isn’t fair.  Each of us has our own troubles to work through and who hasn’t said, at some point, this just isn’t fair. However, this weekend felt like being smacked over and over by that clichéd message, watching my Mom go to the hospital and have emergency surgery, for yet another fall, yet another broken bone. I’m long past brooding and asking why, when it comes to Mom’s Huntington’s Disease and the endless decline it has forced on her. There’s simply no point. However, it’s really hard sometimes, times like the last several days, to not say “What the fuck? Really?”  Sorry, but I really don’t think in clean language when under duress. I don’t think in clean language most of the time. Hard times call for hard f’ing language in my book, and this weekend was hard, really f’ing hard.

Mom’s decline has been so long. I wrote about it recently in Ode To Birthdays Missed. She has disappeared in bits and pieces over weeks, months and years.  She’d already tested positive for Huntington’s by the time we all were forced to watch my grandmother (her mother) slip away and finally die. However, when grandma was diagnosed, it felt different. We all still had the luxury of resting in denial for a little longer. We all knew what might lie ahead for some of us, but until tested, we each pretended we were safe. It didn’t seem real, even though we watched it take down a goliath of a woman.

(Perhaps the only “pretty” thing about Huntington’s: microscopic imagery of HD –> neurons)

After Mom was diagnosed, however, it all felt a lot more real, pretty damned fast. We (her children) each knew we had a 50/50 chance of having it too, and until I was tested and heard that I was negative, each day was an agonizing effort to not see each forgetful moment, each trip, as a death sentence.  With Mom, nothing seemed overtly different at first, but I definitely started watching, looking for signs that she was symptomatic. Was she snappy with me because her symptoms had started, or was she just being difficult again? Did she get lost driving home because she was new to the area, or because she was confused? Would I have tripped over that step too? Which came first,  the chicken or the Huntington’s egg?  Everything became a possible clue, to confirm what DNA testing had already told us, but what our minds and hearts couldn’t quite accept: she was leaving us.

I still remember so clearly the first time I really thought, Oh my God, there it is; she really does have it. My husband and I had taken her to dinner at a very nice restaurant in Michigan, where we all lived at the time. The owner, a friend, came over to meet Mom and suggested a wine he loved.  As I watched her talk to him, something seemed off, something in her expression. And then it clicked: her eyes, here eyes seemed empty, for a flash, lifeless. It was so upsetting and so clear to me, that I went outside for a minute, feeling tearful and shocked. My husband followed me out and wanted to know what had happened. I explained what I was seeing, and that it was just sinking in that mom did in fact have HD. He comforted me, and reassured me that I was seeing things that weren’t there. However, what I saw was not visible to his surgical eye, it was something only a daughter could see. It was not long after that that others began to notice the change. Her once deep blue eyes were just not the same, and while not everyone could put a finger on it, friends and other family members started noticing that she just didn’t seem to be “focused.”

 (<– Mom as a new, young grandmother. So beautiful and happy, 1990)                      The decline began there and has continued, without relief. Now, she often stares off and says little. It is rare that we see prolonged life in those eyes, though we know that she sometimes reaches out to us with them and tries to communicate what she can no longer say.  The hardest part, aside from my own personal loss, has been watching her disappear to her grandchildren. Once the favorite, the “Grammy” who took them to the beach, crawled on the floor to play silly games, cuddled each of them when they were with her, has been replaced by a grandmother that makes them uncomfortable, leaves them struggling to know how to act, how to feel around her. Now they feel sorry for her, they know they should care, but they don’t really know her anymore. They don’t know what to say to her.  They’re all good people, so they know they should feel something, but they don’t really.  They love her, but it’s become an obligatory love, not the unabashed adoration they felt when she was healthy and made each of them feel special to her. And they were so special to her.  Mom adored each of her grandchildren and spent as much time with them as she could. She was the best baby cuddler and frankly, as a young mother I resented her insistence that maybe my babies preferred to be held by her. Now, through the gauze of wistful memory, I want to give her that one. They each loved Grammy hugs.

 (<– The gang grew and she loved it. Two more grand babies would still come,  1996)                When she lived near us in Michigan, each of my children vied to be the one who got to have sleep-overs at Grammy’s house. She would take turns letting them stay over, eating out at favorite restaurants and eating junk food, while watching a movie. I’m not sure how many times she and Principessa saw Titanic together, but they saw if for the first time without my permission and Principessa loved Grammy for that. The boys put up with movies they may not have wanted to see as much, just to have the same fun their sister did. They loved to walk her dog Meea, an annoying pug puppy, who we all came to love. Everything was fun at Grammy’s house. I miss that my kids barely remember that anymore, and have a hard time seeing her beyond the withered shell she has become, beyond her injuries, her awkward sounds and gestures, the embarrassment they can’t help but feel, in public with her. They, like others, see her disorder first and then remember she is their grandmother as well. I resent that loss most of all.

(<–Some of the best days were at the beach.  Florida 1999)                                          This weekend, Mom had yet another fall. We’ve stopped keeping count, but there have been way too many of them lately and frankly, sometimes when I get a call from the nurses, it is more of an annoyance than a concern. There’s little I can do, but they call me because I’m the one they notify. Most of the time, the call consists of letting me know the details around the fall and then an accounting of the injuries and what’s been done. Lots of lacerations, skin tears, bumps and bruising these days. Not much to be done about them. She’s had two pretty ugly head wounds lately and taking her out, she looks like someone beat her up. Sometimes, I can’t help but feel self-conscious, wondering what other people think might have happened. It’s petty of me, but it’s the reality of this decline. A lot of what I think and feel seems wrong, dark and devoid of compassion. I can’t help it, it’s hard to remain upbeat or hopeful, think positively.  Hell, those emotions became obsolete here a long time ago. There are rare occasions when I can still tease Mom and she laughs, and gives me an exaggerated grin that makes us all laugh back.  Sometimes we get a glimpse of her sense of humor, once dry and sarcastic and it makes us all smile, to see her instead of the Huntington’s for a moment. In her former life, she was often the life of the party or family event. Now she fades into the background and we all politely ask her things from time to time to make ourselves feel better. We pretend that she wants to be part of things, but she doesn’t. She is happy to be with us (or that’s what I keep telling myself) but she is no longer all that concerned with what’s going on around her. Still we ask: How was your day grammy? Do you like that mom? To convince ourselves that she’s there, that she’s part of things. Often she doesn’t answer.

(<— Still happy around animals. The llama visited her nursing home! 2010)

So this weekend I got a call at 12:30 AM on Saturday. Honestly, it was annoying. I was almost asleep and the nurse on duty, who was not the sharpest nurse I’ve dealt with, told me in very vague terms that Mom had fallen again and had a “bump, about 8 cms on her elbow.” I asked if it seemed broken, and the nurse became flustered and said she “wasn’t sure, maybe not, (she) would call the doctor.” I was tired, but something nagged at me and I took the phone to bed with me. When there was no call back, I presumed there was another bruise another bump. I called when I got up and the much sharper morning nurse told me that Mom’s elbow looked “really bad” and they had ordered an x-ray. In short order, the x-ray confirmed a break and I was on my way over to take Mom to the hospital. Even then, I imagined a cast and a few hours at the hospital. I was frustrated; it was a friend’s last day at the Farmer’s Market and I promised I’d stop by her stand. The sun was out and I was now going to spend my day in a hospital. Daughter of the year. Seriously.

When we got Mom’s jacket off and I finally saw her elbow, I truly felt ill. Her arm was so discolored and swollen that it was actually shocking. I felt guilty and remorseful that I’d been whining about Market salads and sunny days when mom was clearly in far more pain than I’d believed. I’d been (insincerely) pacifying her for an hour or more already, convinced that this was all another small thing to manage. The sight of her injury was sobering in a kick you in the head kind of way. From then on, I was acutely aware of making sure that she got pain medication and that the various techs, nurses and aids, understood her condition and didn’t talk down to her or didn’t address her at all, as so often happens.

It was determined that she would need surgery, but since she’d eaten late morning, it would need to wait until Sunday morning.  Morphine brought relief from the pain she’d been in for nearly thirteen hours with the added benefit helping mom speak much more clearly and in full sentences. Interesting thought that a low dose narcotics patch might help her communicate better? More challenging was the discussions we needed to have about her DNR (do not resuscitate orders) with a friend, who would also be her surgeon. Such a surreal moment to talk to a friend and reassure him that “whatever happens,” we didn’t want him to feel responsible and that if things were to go very badly, we would not want him to take measures to save her, my mother. He has had Thanksgiving dinners with her. He knew her when she still drove her own car. Now we were discussing the fact that he might  have to let her die, and we are telling him that we know that might be best.

There, it’s said. It is the ugliest part of this entire ordeal: the endless space we live in, waiting for… her to die. We live from one crisis to another and it’s become so regular that I don’t even jump when the phone rings late at night. I don’t rush over and check to see what a 8 cm bump on her elbow looks like. I don’t hope for her to come out of this whole or better, because she wasn’t whole when she went in. I spend so much time imagining what it will feel like when we finally lose her, what will be the cause. Will she fall, will she choke (one of the most common ways HD patients die), how long will she linger in this terrible state where quality of life is so vague and meaningless that I jump on any smile as an indication of any quality? Honestly, I there is no real quality to her life and it’s nearly impossible to not just wish it was over. The mother I knew would hate this and I hate watching it. How will I feel when this happens: when the nebulous becomes real?

Selfish? I feel selfish so much of the time. Please, spare me the reassurances that I’m not. I appreciate the kind words and support, really I do. I have good friends and loved ones who reassure me all the time. However, much of what I do, many others would do in these shoes. We all have our  challenges and difficult life issues, and we just get through them. We do what we can. But so much of the time, I honestly just feel selfish and callous.  I didn’t rush over there at 12:30 AM Saturday because I wanted to go back to sleep. Granted, the information I got was useless and it made it easy for me to dismiss it and go to bed. But, I felt it. I knew something wasn’t right, in my gut, and I went to sleep anyway. Mom, lay there in what had to be agony until the next day. All these false alarms and near disasters make the real ones easy to miss… or easy to dismiss. Nurses passing by in the ER, telling me what a good daughter I am as I rub her feet, and silently pray that she will just slip away peacefully when they take her in that sterile room.  That would be kind, that would be fair.

(<– 2 days ago, pre-op)                                                                                                                As she lay waiting to go into the Operating Room, she drifted in and out of her morphine dreams. She would begin talking quietly, but in clear, complete sentences and I couldn’t help but hold my head very close and hope to hear something that would tell me what she’s thinking, what she wants. She talked about her dog (who died three years ago); she talked about her surgeon and her hope that he helps her pain and doesn’t make it worse; she mentioned seeing an old friend. Who? As she lay there, eyes closed, her face relaxed, she seemed almost well again. She smiled and I hoped that her dreams were sweet. Maybe she was dreaming of babies to hold or dogs to cuddle with. Maybe she sees herself whole and well? I wish I could see inside those smiles, hear her thoughts. Selfishly, again, I wonder if she is thinking of me, of my sister and brother, of her grandchildren. In those dreams, does she see us all and know us? Does she know that we don’t really want to lose her, but that we already have?

As a joke that she once would have done herself, I pulled up her gown and wrote in black pen, just above the area where the surgeon, our friend, would cut her arm:  “My surgeon’s hot!”  (For the record, he is and she would tell you that, if you asked her). The OR nurse chuckled and I told her that Mom would have done it herself if she could. Later her surgeon told me that they all laughed when they pulled back the drape and saw it. He’d never had that happen, and it mad him blush. Mom would really like that. He put in a metal plate and several large screws, to hold her fragile elbow together. The recovery will be 8-10 weeks, a very long time in my mother’s world.

Those weeks will be so difficult. She’s lost the use of her left arm, and she’s left handed. She can no longer use a walker, the only way she could move actively around the nursing home. She can’t feed herself and she is in constant pain. Her risk for infection is very high and that too becomes something to wonder and hope for?  In discussing the various things that her doctors fear, I ask:  would she suffer? They reassure me that if she developed any of these complications, they would keep her comfortable. Again, I find myself thinking that keeping her comfortable would be a better quality of life than what she currently has. Oh the irony, that she may feel the most relief, the most peace at the very end. Life has not been fair to her, but neither has death. They both taunt her, play with her and with us, and it’s just not fair.

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