It Was Everything We Wished For—And So Much Less

Note:  If you have just suffered the loss of a loved one, you might want to pass on this one, or it might help.  If you are caring for a loved one and have wondered about hospice and end-of-life issues, then this might be informative.

Once my sister and I decided that 89-year-old mother’s dementia had reached the point where she could no longer live alone, we toured a number of “board and care” homes and found a comfortable place for her to live, surrounded by caring and competent attendants. The home was only three miles from my house so I could visit daily and make sure she got to her doctor visits or quickly attend to any emergencies. We both recognized the inevitability of her decline, and we stuck to the mantra, “We just want her to be comfortable.”

My sister was always a great source of support and comfort to me, but once she returned to her home in Maui, the burden of decision making, finances, and the occasional all-nighter in the emergency room fell to me.

That period of my life stretched out over the past three years. I had a front row seat in watching my mom slowly lose more and more of herself, and I struggled with the constant responsibility of living up to what I thought it meant to be a “good son” when I quietly knew, I really wanted it all to be over.

I thought I was prepared, but it all happened so fast. I got a call from the home telling me mom wasn’t breathing well, and we got her into the doctor who diagnosed her with pneumonia and gave her some new meds. The pneumonia persisted, and I finally made the call that it was time to seek out hospice care.

When you sign up a loved one for hospice the first thing that the glossy brochure will tell you is that “you are not giving up, not throwing in the towel” because, in fact, that is exactly what it feels like. But as my orientation went on, it became clear that this service would provide exactly what my sister and I had promised ourselves we would do—keep mom comfortable. She would get in-home care, around the clock if necessary—no more exhausting doctor visits or runs to the emergency room. And most importantly, they said, “we won’t do anything without your approval and consent.”

I started her on hospice services on Friday, June 5 and she passed away on Friday, June 12.

There is no doubt in my mind that I made the right decision and that I had placed her in the hands of caring professionals, but it also was a week full of awful decisions for me, all of which were papered over with words like “letting nature take its course” and “keeping your mother comfortable.” What all of these decisions really amounted to was my being complicit in, being responsible for aiding in the process that would end with my mother’s passing.

It began with being presented with a list of medications that they wanted to take her off of because they no longer were necessary to keep her comfortable or prolong her life. By this time my mom had drifted into a semi-conscious state and it was becoming more and more clear to me how near we were to the end. The most wrenching decision for me was when they asked me to agree to stop feeding her. The danger of her choking was now so great because of her state of awareness that it was time to begin withholding food.

I had to go deep inside of myself to be able to say yes to this. I had to remind myself that my mother was never, ever going to get better, that her immune system was so compromised that there was nothing to be done, that I had sworn to keep her peaceful and comfortable to the end.

After that, it was just a couple of phone calls asking if it was OK to up her morphine. By then, I had conceded to the inevitable—that she would, in fact, never wake up again.

I went over to the home on that Friday evening, planning on spending the night, but knowing that her time was short. Before midnight the nurse called out to me and I stood at her bedside, trying to say something comforting, feeling a little bit numb, and watched her drift off.

I had been able to accomplish exactly what I had told myself I had wanted for her. She died in a home-like environment, without pain or dramatic and useless interventions. But as I drove home around 1 AM, it was so much less than what I had thought it would be. It was a comfortable, unremarkable death that left me feeling both hollow and relieved.



Did Anyone Happen To Notice Where I Set My Brain Down?


I never had a great memory to begin with. For years, I relied on my sister and mother to fill in significant gaps in my childhood memories, and my sister continues to be a great help with this. I apparently lived a vibrant and active life as a youngster, and I do remember significant portions of it, but other parts are long gone and have been for some time.

As I age (62 currently), I have become more and more aware of lapses in memory mostly because it is awfully inconvenient at times and also because my family tree is pretty heavily infested with dementia, and I sometimes get concerned as I feel the memories drift away.

However, I’ve gotten reassurance from a number of sources. I have a lot of younger friends who all report similar memory experiences to the ones that I have had. Ever noticed how easy it is to walk out of some movies and 30 minutes later be unable to really explain what it was all about? Need to re-read the chapter you just read last night to remind yourself what’s going on in the book you are totally into? Or have you ever had to to search your mind frantically to list the critical things you accomplished during the day when confronted with the question, “So, what have you been up to?”

So when something slips my mind, I don’t feel so bad anymore. In fact, I’ve come to sort of enjoy my coping mechanisms. I almost always remember to put my keys and wallet in the same place every night before I go to bed. For the first time in my adult life, I not only write things down on my calendar, but actually check it regularly. I often post a big note on the bookcase that is directly across from my bed with a list of any appointments or things I need to get done the next day so I see it first thing in the morning. Since my car lacks GPS, I use directions like those below to get me on my way.


However, some of the slips can be maddening. I cannot count the number of times I have marched into my garage, straight from another room of the house, and stood peering about in the heat absolutely knowing that it contains an object that 10 seconds ago I had a critical need of. I will stubbornly stand there for minutes at a time searching the room for… what? No clue. The only solution is slink back to my previous location where somehow, magically, my memory snaps back and I know exactly what tool, hardware, or device it was I needed.

I have become almost used to the fact that when introduced to someone new, my brain will vaporize that person’s name within 3 seconds of the introduction.  Even when I make a conscious effort, preparing myself to remember a new person’s name, something erases it upon arrival. I’ve become so resigned to this that I am less and less bashful about breaking in with, “I’m sorry, and you said your name was….?”  I take some comfort in the number of times they too have had to ask me my name.

Maybe we are simply so overstimulated by the barrage of information that we have to process that our brains just can’t keep up.  I tell myself that often because I often forget what I’ve already told myself.

I have, however, become convinced that I do have one particular memory disorder so unique that I have named it—displacia. It is a condition that causes me, most frequently in the kitchen, to search for a needed object in the cupboard or drawer exactly one cupboard or drawer over where the object lives. If I need some Comet to clean the sink, I will find myself staring dumbly at baked and canned goods wondering what in the hell I am looking for, knowing I have no interest in baking or cooking. But if I should need some corn meal, my first stop will likely be next door where we keep all of the cleaning supplies, again staring, stumped and confused.

So I now look at memory as a sort of game, even as a battlefield, where I know I have to use my wits to keep my life in order and to fill it with moments that are landmarks I simply must not lose. I do not want to become an unmoored boat that simply slips away from the dock, having forgotten to load up with memories that make me who I am.


DAY 5 (see note) A Parent To My Parent

Note: I’m starting this only because a friend that I like and respect very much invited me to be part of the club. And also because as a blogger, I’ve discovered a creative kick in the pants can be very helpful at times. Also, I am going to call this DAY 5, even though it is my first contribution, just so I don’t feel hopelessly behind for the next month.

Just like there was no manual for living my through my 30’s and raising small children, I have longed at times for the manual that would guide me through the difficulties of being a parent to my parents.

My mom is now 92, has dementia, can barely converse with me or anyone else, is incontinent, is hard of hearing, and requires nearly constant supervision. She also has a fragile immune system and just this Sunday it was compromised by something, probably an infection of her lungs. As the only child living in the vicinity, I’ve been on call for 4 years now and once I arrived at her board and care home on Sunday, I could see her labored breathing was going to land us in the emergency room.

I’m not sure if it is worse to be attending someone in the emergency room or to be the actual sick person. Mom was agitated for the two hours we waited to get into a room, which meant she would rock back and forth and jabber incoherently and loudly at times while I would try to calm her and get her to stop.

I’m far beyond being embarrassed by this behavior or worried about the reaction of others. They can move if they don’t like it. Hell, I don’t like it, but not liking it isn’t going to change anything. And here’s where I struggle. To all those waiting sick folk, I appeared to be a patient, attentive, loving son. I comfort her and make silly jokes and do anything to break the cycle of moaning and tension that seems to seize her like a wave that will slowly, and only temporarily, recede. I’m sure they look at me and think, “He’s a good son.”

But I’m not. I hate all of this. I hate the constant, seemingly useless visits I make to her every day, the disturbing emergencies, and even the routine doctor’s visit that usually results in a three-hour commitment. I know that none of my efforts or the doctor’s efforts will improve the quality of her life. Every time I leave her I feel sad and depressed. I’m long past the point where I can tell if I’m sad for her or for me. That’s why I feel like a fraud. I told my wife once that everything I was doing was actually “remorse insurance” for myself—a desire that when she passes I could honestly feel that I had done everything possible to make her last years, if not joyful, at least comfortable.

It seems to me that the true good sons out there have hearts that are much more full of love than mine is. My maddeningly detailed, obsessive, neat freak of a mother left long ago, and I’m now caring for what is left. I desperately want it to be over. I hate myself for saying it, but there it is.