Apparently, I wrote this in the spring, but I just stumbled upon it in my files. I don’t remember having written the piece, though parts of it are familiar when I read it. I think I decided against posting it on Mother’s Day so as not to depress my audience during the holiday. Very thoughtful of me, right? You should know, that although my mother is still functioning all of these months later, the “decline” I mention in this piece has become more pronounced, which is to be expected, I”m sure. That doesn’t make it easy.
Mother’s Day, 2014, and in terms of the weather, it’s one of ten perfect days we get each year in Boston. A perfect day is 80 degrees, no humidity, no clouds, crystal blue sky, and soft breezes. Aside from these ten days, the weather sucks: it’s too hot, too humid, too cold, too windy, too rainy, too gray, too stifling, too raw, too anything. But today is perfect. There are nine perfect days left, so I expect a few in June and a few in September, and one or two sprinkled amid the stifling hot summer months.
There is nothing else perfect about today. I said it’s Mother’s Day. When I read Facebook I realize Mother’s Day is supposed to be a joyous event to celebrate our wonderful mothers, dead or alive. My own mother is in between dead and alive.
She should be out in this sunshine with the perfect breezes and sky, before it’s all lost to the body she resides in, the one that is slowly declining. But she can’t get out. I can’t get her out. It’s as if there is a glass wall between us and she must stay on the inside of it, while I look reluctantly in at her from the outside. I turn my head and leave.
I am at the deli, cheered up by the endorphins and caffeine streaming through my blood, ordering my mother sliced deli meats, cream cheese, buying a quartered pullet because she wants to cook chicken soup. These are part of her Mother’s Day gifts. There was the time when she would have driven down to the deli and market herself to buy these things. There was a day when I would have driven her, but she would have gone into the stores herself. That particular day was just a couple of years ago. Now she can’t get there, even if I take her.
It’s Mother’s Day, the weather is perfect, and my mother is in decline. She has stage 4 breast cancer. She is 84.
Yesterday I was shopping in Bob’s to try to find her polyester stretch pants, the kind she wore in the 1960s and 1970s, like Laura Petrie wore on the old Dick Van Dyke show. I tried to explain to her that they may not make such slacks anymore, not in the way she remembers them.
“Polyester pants were now basically workout gear,” I say to her.
“I know that, I know that,” she said, a little abruptly. The answer was miraculous enough – that she knows that, which I believe she does, but that she heard what I said, without the nearly constant, “What?” .
As I was driving to Bob’s yesterday, and while I was in the store trying to find polyester pants, I kept seeing my mother bent over. These days, 90% of the time, she walks through the house bent over and gasping, as if she’s in great pain. For the first time since her cancer diagnosis, I thought: I think she’s going downhill, she can’t stand up straight. I felt so sad, nearly sad to the point of speechless, maybe to the point of tears, although most of the time, she makes me feels so frustrated. It’s very hard to repeat oneself up to four times in nearly every attempt at communication.
It’s Mother’s Day and I’m not even home with her right now. It seems cruel, on the one hand, to leave her alone on what might be our last Mother’s Day together, and yet, I don’t know what I would do with her if I stayed home. She would still insist on creaking up and down the staircase bent over in pain to do the washes, to load and unload the dishwasher, to get in my way as I try to prepare some food. I cannot offer to help her. I cannot say, “Look, let me do the washes.” She would look at me dumbly, as if I’d just spoken in Greek or Chinese. Her mouth would hang open. Her aged faced would look nearly ghastly and close to dead. I can’t take it, the emotions inside me crash and bang and I have to keep it all in so I don’t make the situation worse for both of us.
On a very bad day, she will let me load the dishwasher, and that’s when I understand she is terminally ill. I have been banned from the dishwasher in the past because I apparently am very bad at loading it. So I watch her load and unload it, and the laundry, bent over like a what? Like an old lady on her last legs. Like a dying woman.
I don’t know if being bent over so much of the time is from the cancer, the osteoporosis, the collapsed vertebrae, or just from old age. But she has most definitely declined. And as she declines, it becomes more and more difficult to talk to her.
I received a call a few days ago from a woman who works for the Steward Medical Group, a company that owns all kinds of doctors’ practices and medical facilities in the area. Although the call, and the knowledge the woman had of my mother’s medical condition, felt a bit like invasion of privacy, I suppose as owner of these facilities, they have access to medical records.
She was an older woman herself. I could tell from the crackle in her voice. She said, “I’ve seen your mother’s diagnosis. I’m calling to find out if she’s able to afford her medication. I see here that she just wants comfort. I’m trying to find out if she has the pain medication she needs.”
I tried to explain the situation.
“Well, she lives with me, you see,and right now, she’s still functional. She can go up and down the stairs, use the bathroom, take a shower, all that. I’m there with her, well, actually, I’m at work, but I’m home with her, I mean I live there. I mean, she lives in my house.”
“We will also be having a social worker call on a regular basis to see if she can be of assistance to her and to you.” That would be nice, to have someone of assistance to me. I could have used that person eight months ago, when I was trying to get referrals and appointments, but I am sure I will need the help now or soon.
“Um, okay.” The help sounded like a good idea to me, yet I’m always suspicious when some outside entity starts watching over you. Yet, what’s the difference if they try to control my mother’s life, which I don’t think they are trying to do, but if they were, what’s the difference? How much longer can she have left?
“You can try calling her if you want,” I said to the lady on the phone, since she had expressed an interested in doing so. “I will warn you that she doesn’t always get what you’re saying. You might have to repeat yourself. I don’t know if she’s kind of deaf. I don’t believe she is demented, but she’s hard to communicate with. Here is the number.”
When I arrive home in that evening, my mother tentatively walks into the kitchen and hesitates, and I know she has something to say about the woman who had called me, and then her, earlier in the day.
“I don’t understand what she called for. You’ll have to explain it to me.” I do my best, not entirely sure either what the woman had called for since she is not Hospice.
“It’s the Steward Group,” I try to explain. “You know, they own the hospitals and even Dr. Choi’s practice.”
So I say it louder, no response. So I say it louder still, no response, so I say it perhaps a fourth time followed by, “Do you understand what I’m saying?” and a bit pissed, she replies, “Yes, I understand.” I guess she chooses not to respond
“They are a company that owns the hospitals and the doctor’s practices.”
“I know who they are!” she says.
I say, “Don’t worry, they are just calling because it’s their job.”
“She said some other nurse would be calling me. I told her to call you, that you are handling all this.” It is the social worker who was going to call her, who will now be calling me. My mother doesn’t understand, and this makes it so hard to help her. And this is why she is alone right now on Mother’s Day, because it is so hard to help her. And I’m a bitch, or I’m at the end of my rope, but the rope needs to be longer, because she isn’t gone yet.
A few hours later, my mother says, “What a jerk that woman was. You know what she asks me? She says, if it’s an emergency, you will call 911? What does she think I don’t know that? Why doesn’t she call 911 for me?”
“She’s just trying to be supportive.”
“What?” That eternal “what?”
“Nothing,” I say.
I have been trying to decide about where I will live when she’s gone. Will I stay in my house, give it a makeover, maybe find a roommate and feel comfortable again within those walls? It is my home, after all, and there is so much good about it. But will her ghost in every room freak me out? Will the house just feel strange and bereft and make me feel insane with her missing from it? I don’t know.
I have been looking at condos in the area, most of which give me a great deal of anxiety – the complexes look horrible, some of them are nothing more than converted apartment buildings from the 1970s. Projects once, projects still with the low owner occupancy rate. I might be sharing walls with noisy neighbors, punks, screaming children, heavy metal played at full blast at 2 a.m., or maybe the condo association will piss me off and I’ll walk into a meeting with an automatic pistol. The automatic pistol, you should understand, would be my mouth.
But today, before I went to the deli, I drove into Knollsbrook, which is a condominium community I lived in as a teenager. It’s one of the nicer developments in my area, like a small town all its own. Way, way in the back, there is a one-floor, 1,200 square foot, 2-bedroom- 2-bath unit for sale. I’ve seen those units. They are beautiful. I could afford it. The outdoor porch is enclosed in screen. The view is of the woods. I want to sit in that screened in porch with my two cats, listen to some soft music, read a book, do some writing, and start my life over. I want to buy this place, probably one of the nicest and one of the most affordable units in the complex, but I hear they won’t take animals. I hear you can get fined or even thrown out, if you have pets. Yet I hear they may not enforce that. And as I drove in the first thing I saw was a couple unloading two dogs. They might have just been visiting.
I want to look out my windows and see the perfect landscape, the snow removed without any effort from me, swim in the three outdoor pools and the one indoor pool, as I did as a teenager.
I am searching for the place I will live when my mother is dead.
It’s Mother’s Day, and Knollsbrook looks perfect for me, but I have to leave and buy deli meat and a quartered chicken and cream cheese and bulkie rolls and bring them home to my mother and try to talk to her so she won’t feel alone on this day, perhaps the last Mother’s Day she will know.
Those last days… especially holidays can be beyond painful. There is a helplessness that paints everything with anxiety and desperation as an accent color. I read a book on death and dying when my Mom got sick. It gave helpful information on what the dying person experiences emotionally and psychologically. It explained that the dying person, whether they realize it or not, begins to pull away from life and those they love. They sleep more and decline invitations to activities, and usual responsibilities. In a way, they are preparing themselves for death, where they will not have those people and those things to do. It was also explained that the dying person is preparing those they love for the loss of their presence. I have no idea if this is the answer as to why they do this, but I do know that my Mom, who was always social and busy, and loved spending time with us, began to pull away in the last few months of her life. She slept more and would decline or cancel activities she normally loved. Watching this decline as well with my Grandma, I believe there is some truth to it. It isn’t easy, but I hope that it does in some way make things easier for them. Their Hell was beyond comprehension, but if they found some comfort in the isolation, I know they need it. I hope that you have some comfort in knowing your Mom is not alone… you are not alone. It is a common occurrence in the process of decline. If you need to talk more about it, or just need to talk about anything, just let me know.
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Kris, you are always so thoughtful and compassionate. I know right now you are struggling with your own medical problems, so to provide this kind of comment, along with the offer to talk, speaks volumes as to the size of your heart and soul. You are one of a kind and I feel lucky to know you. I hope you feel better soon. I expect you are home by now. Take care and we will talk at some point. xo
This was heartbreaking to read. As you know, I lost my father in April after a long decline, and the feelings of sadness and loss and trying to cope resonate. I know that nothing a friend can say or do can ease the time. But there are many people thinking of you and so sorry you and your mom are going through this.
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Faye, actually, friendship, such as yours, does help to ease some of this pain, so I thank you for being such a great friend. I know you can relate, having lost your dad in the spring. It is very difficult to watch a parent, who once was your caretaker, become unable to care for you as they did when you were a child and soon become unable to care for themselves. I’m sorry this was heartbreaking to read. I’m sorry we must all experience such things. Thank god we have good friends.