I walked through the airport gift shop on my way to baggage claim in my home airport, just returning from a visit to Mom and Dad’s. There they were, a beautiful pair of handmade rose mittens with beautiful flowers embroidered on the back. They were generous in size, colorful, and beautiful, just the thing for my mother’s cold hands.
Mom was struggling with an at the time undiagnosed neurological problem that was making her hands and arms weak and weirdly causing her ring fingers to bend in toward her palms. She couldn’t get gloves on anymore, and with winter in northern Wisconsin, her hands got ice-cold as she rode in the truck with Dad. While with them on this last visit, I mentioned I’d try to come up with something to keep her hands warm. Now, here was the perfect thing …a beautiful pair of mittens big enough to slip over her uncooperative fingers and awesome enough to “make a statement.” Mom loved color and loved to “make a statement” with her clothes, with her toenails, with her home, with her car. Now, as the disease we would later learn was ALS1 started its awful progression, making a statement was harder, since Dad had to dress her, and she could no longer do her hair or nails herself. Gone were the exuberant hugs and room entrances, the twirling and little dance steps. These mittens would make a nice statement in the truck and at the restaurant where they ate lunch and dinner out.
I checked the price tag. Oh my, way too much! Dad probably wouldn’t put them on her anyway, I thought. I walked away and was just about to leave the security area when tears started to flow. What did the price matter? I couldn’t do anything to stop Mom’s horrible disease, but I could keep her precious hands warm maybe even once. I went back and bought them. The next day, I put them in a shipping envelope with a note and sent them off to Mom. I don’t know if she wore them, but she did thank me when I called next. I think Dad did, too.
Mom’s decline and death were a very hard slog and once Mom died, she just felt like she was gone. I feel this turbulence in the end of her life, like a nauseating airplane ride through a storm, leaving one vomiting and exhausted and just glad to be on the ground again, glad it’s over. But I’m not glad it’s over. I feel somehow cheated.
When I remembered the mittens, tears welled up unbidden, seeming to open something, perhaps a space of the love I had and have for her that I couldn’t allow myself to feel in the thick of things. Back then, I had to hold together. Dad and Mom needed, even expected, me to be the strong one. They needed me to show up and be with them, perhaps so they could make it through the difficult, bittersweet end of their lives. I would fly from my home in Montana at least once a month, sometimes twice, to hang out with them for a couple of days. We’d go to the “resternt” (that’s how they pronounced it) for lunch and dinner when Mom was well enough to leave the house. Later, Dad and I would go out for lunch, while the nurses stayed with Mom. Mealtimes were the constant timekeepers of the day. There were some five different northern Wisconsin restaurants they liked to go to, decided by which one was having a special. My parents were well off by that time, but they still shopped for bargains, so we’d go to spaghetti buffet at Guches, or half price pizza a PI Pub, or the fish fry buffet at Zastro’s across the lake. Mom never liked to cook, and Dad had never learned. But mostly the restaurants were an important social outlet, bringing the companionship of familiar people. The food was typical north country diner fare, not very interesting or tasty, but suiting Mom and Dad’s tastes.
I usually visited over a weekend, flying into the regional airport two hours away, renting some 4WD vehicle because my parents’ driveway was too treacherous to get up otherwise in the winter. The folks at the car rental counter became familiar and recognized me because I came so often, and it was small town America. Then, I would drive the two hours to Mom and Dad’s. Dad wanted me to arrive in time to go to dinner, but sometimes there were delays and I’d spend the night in Wausau. Mom and Dad were always glad to see me in those days. They had become isolated with just the visits from nurses and the company of CNN or RRTV (rural route TV) that Dad kept blaring in the living room. They had largely run out of things to talk to each other about, especially as Mom’s memory became fluid and spotty. Dad was never a very talkative person, but he would want to commiserate with me about Mom’s care and what he was doing. Never a caretaker before, he surprised us by doing all of Mom’s care until about the last year when he hired in-home nurses to help him out. He was as gentle as his nature and ability allowed and dedicated himself to ensuring every detail of her care was thought through and managed. He was slow to ask for help outside of the family resulting in some suffering on their part, and eventual suffering for me when I had to enforce boundaries to my caretaking. Although Dad was strong enough to lift Mom once she could no longer assist I was not and Dad didn’t understand this. He wanted me to take care of her by myself while he took a trip, as I had done before. I agonized, knowing how much Dad wanted to go and knowing he needed to get away, but I was terrified I would drop her or somehow cause her death. Finally I was able to say no with the encouragement of my husband and brothers. Dad hired their nurses to stay full time for his trip, with a lot of resulting anxiety for Dad and for Mom. We all made it through that, nonetheless.
In earlier years, I would feel a lot of dread and anxiety when arriving at my parents’ house. Dad could be reactive and angry; Mom was skilled at inducing guilt and shame. They could be very demanding and expected me to do what they wanted. But as they became older, and as Mom declined, that fear started to relax, and they felt more genuinely welcoming to me. What Dad was going through as Mom declined was hard and he would sometimes lash out by email at me and my brothers, probably because he didn’t know what to do. Mom was always an anxious person, and for her, losing her physical mobility seemed terrifying. When she became highly anxious or upset, I think that’s when Dad would lash out. He couldn’t help her and that made him mad. Likely, he felt helpless. As a successful businessman, entrepreneur, boss, and person used to being in control, helplessness was not something Dad accepted. He was aggressive about getting what he wanted and expected, yet he couldn’t change what was happening to Mom. When that became overwhelming, he lashed out at us by email. That was irritating and hurtful, but I came to recognize it as his version of calling for help.
Translation is everything when dealing with family.
I knew Mom was dying at least a year before she was given the ALS diagnosis. I knew too much with my medical training and general intuitive nature, yet I couldn’t tell anyone but my husband. The rest of my family still held hope that she had something that could be slowed or would improve because the doctors didn’t have a definitive diagnosis. Organized by Dad, they tried lots of treatments. Some of them, like a type of chemotherapy, were miserable for Mom. I felt I needed to respect Mom and Dad and let them work it out, since I didn’t have any inside scoop on some helpful treatment. My intuition was that she had something very bad that she was not going to recover from, so they needed to enjoy their lives as best as possible and that included having hope, having something to do. Dad insisted Mom try the treatments. Mom certainly didn’t want to be so disabled and would try things if there was a chance she might get better. I suspect she was also afraid to die, although she was never direct in speaking about that. And Mom usually deferred to Dad on these decisions, especially as she became weak and struggled with even the little daily decisions.
I remember having conversations with Dad and Mom about accepting hospice care when the time came. Mom was given the ALS diagnosis almost two years before she died, but they were resistant to hospice care for a long time – partly because the hospice paperwork talks about people being candidates when they are within six months of death and having an incurable, terminal illness. Those are difficult ideas to accept, particularly for a make-it-so kind of person like my dad. For a while, Dad even had a healer coming to the house to work with Mom, even though Dad was usually not much of a believer in things like that. They met the healer through the hairdresser where Dad would take Mom every week to have her hair and nails done when she could no longer do it herself. The healer was a kind woman, but healing wasn’t Mom’s path. In time, Dad eventually accepted hospice. To do that, they had to have an end-of-life plan. If they called the rescue squad, the first responders and hospital needed to know how much to do and to have permission not to do a full code. And so, I sat in the living room with Mom and Dad, as I had with so many families of patients before them, going over what do not resuscitate meant and the choices they had to make ahead of time. Did it make sense to have chest compressions and to be shocked (defibrillated) - probably not. Should she be intubated? Mom was already on CPAP, but she agreed she didn’t want a tube in her trachea or a ventilator. Together we got the necessary forms filled out; Dad would get them to the hospice providers. I helped them with these things because I could, and because that was my place in the family…to help Mom and Dad through things. I didn’t let myself think about how this felt at the time, focused instead on doing that was expected and needed in the moment…until recently I thought about those mittens and those tears came. Having something to do, feeling useful during these hard times was helpful in the moment, yet being strong created a constricted place where my loss and sadness was packed away, like a suitcase, for later. Now, later has arrived.
Mom confided her anxieties and pain to me throughout our lives. I was privy to the intimate struggles she had in her marriage to Dad, all her suffering and sense of being not good enough for her mother, her agony at being sent home from the business she helped Dad start - right when she thought she was reaching a pinnacle of her career. She shared these things as complaints, not things to understand and perhaps act upon. She was someone who had a deep heart, but she kept no confidences and was openly judgmental, so I was guarded and careful about what I shared with her.
I wanted to have deep, meaningful conversations with her about the meaning of life and death, what it meant to be a woman, and a mother. I wanted to know what her real hopes and dreams were beneath the vivacious personality and performance of what she wanted people to see. But, instead, she faded away becoming more and more dependent upon Dad, me, her nurses, my brothers. She didn’t talk about how she felt about her disease and impending death, except through being anxious. “My nerves are shot!” was the closest we came. Strange how that life long expression of hers was literally true in the end; her nerves were indeed worn out. In those last months, she told the same two or three stories over and over, then when tired and out of breath, she listened to the same playlist of songs - songs written by her grandson and son - telling whoever was nearby “Play Andrew’s song” (the song written by her grandson). She would see animals in the trees and faces in clouds visible only to her. She wondered aloud what they were. She seemed to live in a pseudo dream state, emerging into intense anxiety or to comment on the invisible animals she was seeing, and then fade again into a dream world.
I played my part of being strong, well held together, taking care of things. Many a Sunday night, I sat with Mom and Dad watching reruns of Heehaw and Grand Ole Opry shows as Dad tapped his knee, occasionally singing a few words until he inevitably dozed off in his chair. I’d sing along sometimes too. Mom usually dozed off too, and their beagle, Lil Fella, snored as he lay behind Dad’s chair. A sweetness remains as this memory brings tears to my eyes, now as I type this. The simple quietness of being together warmed my heart. I was acutely, achingly aware that I never knew when this would be my last time doing this. I couldn’t hold the thought for very long, because I believed my crying would scare them. After they went to bed, I’d cry a bit in my room, and cry a bit more on the drive back to the airport, then suck it up for the next round challenges.
I never got to have those deep conversations with Mom. She might not have been a deep conversation type of person. Instead, she gave lots of gifts - oh, how she loved to shop and send gifts until she got too sick to do so. She drove us nuts with the amount of stuff she bought and sent. And she made things for everyone; she painted, knit, and did every imaginable needle craft deftly with those hands until they eventually failed her.
And she wrote. She left poems, letters, school papers, newsletters. Most of her writing seemed lighthearted and gossipy to me- things I found disappointing and irritating when I read them later hoping for insight into who she was. I wanted real conversation, deep meaning but I felt like I just got fluff from Mom.
But maybe Mom’s deep conversation was what she left us with, and I just haven’t found the key to unlock her meaning, the story behind the story. I miss the deep love and caretaking that I wanted from her, but that I gave to her instead. Likely, I was an intense and searching child, too much for most any mother to have deep conversations with, especially from her generation. And perhaps deep meaning wasn’t Mom’s style and all there is to know is packed in her signature question “Are we having fun, yet?”
Translation is everything in family, in grief, in seeking to understand a finding peace.
There are deep gifts in this heartache, in opening to the grief. Something in those mittens put a key to the lock on my heart behind which this enormous love wells up, spilling out all over the place. It’s messy, like Mom was. It’s complex and unbounded like my heart.
ALS stands for amyotrophic lateral sclerosis, also know as Lou Gerig’s disease. ALS is a progressively degenerative neurological disease of the nerve cells in the brain and spinal cord. No cure of affective treatment yet exists. You can find good information at the ALS Association.
This is such a touching testament to your deep sensitivity Cynthia.. to seeing "behind" the appearances of ordinary interactions with people (your mother in this case) and choosing to love her even though she couldn't meet you in your desire for more meaningful interactions. I had a very similar situation growing up (of course with very different circumstances) but the same desire for more realness and depth and sadness that my mother or father couldn't meet me anywhere near where my desire for real communication was coming from. I made very different choices than you made with those circumstances.. Instead of your in depth care and focus on them in spite of that lack, I just choose to move further away, as i found it too hurtful to remain in a stagnant position of never talking about anything that remotely looked like real or meaningful. I began to wonder with your offering here, if I had done the best thing in that choice. It felt life affirming and reasonable for me, but I am sure they missed interacting with me, perhaps never really understanding why I had chosen to distance myself from them. I have to hope that they haven't judged me for my choices. My mother, who is still alive at 99 y ears old, is very loving and kind to me, so whatever it was, she has let go of. So now I am left with just doing the same! Thanks for bringing this sweet mitten story to its full bloom, with what was behind the symbol of those mittens. You have a real knack, as I said, for seeing behind the obvious into the depth and meaning behind any idea or symbol. Thank you for choosing to write about this very personal and REAL subject. It has touched me deeply!!
PS.. You have achieved "Sainted status" in my books, for how you handled that soul curriculum with your parents in your life! Kudos!! love;.... ariel
Thank you Cindy…