I began posting on this website not quite a year ago, intending to share my experiences with, among other things, my parents as they went through this last chapter of their lives. But a short while ago, as the going got tough, I, I have to admit, got going. I didn’t show up here. The moment shit got real, the moment my mother started to really, seriously fail, I found it almost impossible to sit at my computer and put my thoughts together, to barely even record what was happening.
In truth, I had taken an unintentional break and had gone to New England with my husband for a few weeks in the fall, determined to see the foliage, slow down, watch less election coverage, enjoy nature and a slower pace of life. Oh, and to write. But somehow, away from my usual writing spots and rituals I never got into a groove. The day after I returned I visited my parents. They weren’t great, but they were pretty much the same as they had been when I left, and any worry/guilt I might have had was quickly assuaged as soon as I realized that they had no idea I had been gone for three and a half weeks.
Three days after that visit I got a very early morning text from Jen, one of the caregivers: Your mother hasn’t eaten in two days and isn’t drinking much. Two hours later I was there to take her with Jen to the doctor. Until about a year ago I could take my mom alone to doctor appointments, or occasionally meet her there with Jen. But once I saw her, so weak, so thin, so brittle, unable to barely speak, I wondered how we were even going to transfer her from the wheelchair into the passenger seat. As it turned out, it was exhausting for all three of us and mildly dangerous, and this venture turned out to be my mom’s last normal car ride. (The following week she had to go in for a test and I rode with her in a wheelchair van, the heat blasting inexplicably on a sunny and warm afternoon, her bumping around in her wheelchair, strapped in like cargo.) I couldn’t believe the change in her that day we rushed her to the doctor, she honestly looked like she was close to dying. I don’t think I took a full, real breath for a week.
Her doctor confirmed what I could see, which is that she was dangerously dehydrated and wasting away. We needed to get nourishment, particularly fluids, in her right away. What was wrong,what was happening? He didn’t seem to know. Possibly a UTI, possibly just the dementia quickly progressing. Somehow as soon as we got back to her condo we immediately got liquids into her, her favorite lemonade, ginger ale, whatever we could get her to drink with a straw. With group encouragement, she ate applesauce and even some pureed squash. The next morning I packed up my blender and went to the grocery story for a major smoothie fixings run and for the next few days I was over at her place whipping up healthy, fatty, caloric smoothies. It seemed to do the trick and the caregivers got the hang of feeding her softer foods. That, along with a prescribed appetite stimulant, brought her back from, as they say, the dead.
I went through a brief, mildly neurotic period of obsessively cooking and baking for her and bringing the food over, as if this would solve the problem, the problem being that she is dying.
She will never go back to the way she was before this episode. She speaks only occasionally, and usually just a few words at a time, if that. She can no longer eat solid foods, can barely hold a fork, needs her swallowing to be highly supervised, she almost, unless she is eating/drinking through a straw, needs to be fed like a baby. On good days, like a toddler. On those days she can eat finger foods, soft pieces of avocado or toast. But, unlike a baby or toddler, she doesn’t seem to have a mechanism for telling her when she is hungry or when she is full, she will usually just eat what you put in front of her, up to a point. She never asks for food or drink.
After a surprisingly straightforward conversation with her doctor, my brother and I conferred and decided it was appropriate to bring in hospice care. Because my parents already have full time caregivers working at their condo, this hadn’t been a huge change in terms of their household. What it does mean is that any of her care now is about nothing but comfort, that a doctor cannot recommend hospice care unless he or she believes it is reasonable not to expect the patient to last more than six months. As she declines, more care will be brought in, but the house now has a “comfort” kit which includes oxygen, a tranquilizer for anxiety and morphine. There have been more meetings recently at their place, different hospice people coming in with paper work and explanations of how things work. These meetings included one with a social worker with an otherwise quiet voice who, for some reason, kept on asking about MORTUARY arrangements in a loud enough voice that I was worried my mom or dad (who are quite deaf) would hear. I don’t believe my mom understands how much she has declined, that she is now in a different stage. I have asked her, as did my brother when he visited this past week, if there is anything she needs to tell us and, besides the very appreciated I love you, there is nothing. All of her wishes were recorded decades ago in her will, so I am grateful there is no confusion there.
But I need to get back to the real reason I am sorry. I just didn’t get it.
I want to at least acknowledge that to those who have lost one or both parents. I thought I could empathize, but I did not truly understand what it was like to go through this time. I had this idea that because it was a normal life passage, parent gets old, leaves a middle aged or even older “child”, that there is a sense of loss, but that it’s softened by the idea that it’s the way life is supposed to be. My general take on it was — I am sorry, but your dad was 83, good long life, this is the way, if we are lucky, it happens. I had compassion, but then I kinda expected you to be over it fairly soon. I didn’t understand that a grieving process is not decided by the age of the person who dies. You can grieve the loss of the ninety year old in your life differently, but not necessarily less, than the fifty year old. It depends more on your relationship to the ninety year old, both present and past. There is, of course, the tragic layer of losing someone too soon, of a young person going well before what feels like their time. But it has surprised me how little grief respects those concepts, grief doesn’t care about what you “should” feel. Losing my mother, and it hasn’t even happened yet, feels monumental in a way I never would have imagined.
My mother in law died in September, after a very long descent into dementia, with her last few years leaving her completely unable to communicate. I desperately don’t want that for my mother, but it isn’t my call. My brain tells me that her time is coming, that, while we can do everything possible to ease this transition, she is on her own timeline. And it does FEEL like it’s time for her to go. But then my heart, my heart can’t stand it, can’t stand to see her like this, her face mostly in a grim, unhappy and tense mask, her eyes big and watery and often quite confused. I want to scream, no, don’t go yet! And then another part of me wants this to be over, as much for her as for anyone else. My chest sometimes literally aches being with her. It’s kind of insane.
Her “good” days, when her eyes reflect understanding, when her face softens, when she smiles kindly at me, they are getting fewer. She seems to sleep much of the time, there is less and less of a schedule to her days, there are no high or low points….After some research, I decided to see if I could arrange for some of her favorite music to be available. I found a collection of my parent’s CDs, recognizing music that I had heard over and over again on vinyl growing up. But my dad had always been TERRIBLE about putting CDs back in their cases, so all of them were wrecked. In an effort to work with what they have (a decent CD player), I replaced a bunch of these CDs, ones that seemed the most loved, and bought new versions. I will take them over tomorrow. I have read that sound and the recognition of familiar music is one of the last things that is left as the body shuts down, and I am hoping it will make things more comfortable. But then the question comes up….Vivaldi? Frank Sinatra? Neil Diamond? Sarah Vaughan?….Am I supposed to put together a “on the way out” playlist?
She could last several months in God knows what kind of condition. My father, very demented himself but physically much stronger and still able to speak, has noticed that something has changed with her. In a recent visit he told me about my mom’s car accident (didn’t happen), he was clearly trying to find a narrative as to why his wife was suddenly so very, very frail. If I allow myself I can obsess on how hard this will be for him, and wonder what he will be like without her, this woman he met in 1949 and spent almost every day of his life with since marrying her in 1953. This woman who, as he once wrote, was there when “all the pages of my life were blank.” I can’t help but think he will go fast after her, but who knows.
This reminds me a bit of when your kid goes off to college and you (well, some of you) are left feeling bereft, missing not so much the eighteen year old as the two year old, and the five year old, the gap toothed eight year old’s grin. The person who I think of as my mother is mostly already gone. But as I gear up for this final goodbye, I am being haunted by vivid memories of her at all these different stages, and find myself anxious to go through old pictures, to remember her at different times, before she is completely gone.
I am humbled by how truly difficult I am finding this last part. I see my parents at least every other day, and soon I will probably need to go more often. There are times when it takes everything I have to make the drive and visit my mother, and more than half the time she is asleep for my whole visit and I end up making small talk with the caregivers or trying to have some kind of conversation with my father. I still bring them food or occasionally flowers, walking in with a big, fake grin plastered across my face. It’s not great. It’s not easy. It’s exhausting and boring. In a completely unexpected way, this may be the hardest thing I have ever had to do, because there is so little reward. At this point, it’s pretty much all sad. There is nothing really left to do, no way out. My Dad often used an old expression that keeps coming back at me, I don’t know where he got it, to express a hopeless situation –“no ass to kick, no heart to plead to.” Yeah, it’s something like that.
Which I guess is another way of saying acceptance.