As I have written for, and worked on this site over the years, most of what I have written about has been more academic, or based on research. I have really not had too much experience in dealing with health issues, care, and end-of-life for a parent or close relative – until now.
My mother-in-law is dying. How quickly that happens is anyone’s guess. What she has going for her, or against her depending on your point-of-view, is that she is a feisty fighter, and she wants to live. After all, she has quite a lot to live for.
My “MIL” – short for Mother-in-Law, just turned 81. She has worked almost her entire life, and just recently retired at age 80. She was a dedicated, hard-working wife, mother, and employee. Her husband passed away about 10 years ago, so she has become incredibly independent and self-reliant. She has a loving extended famlily sith daughters, sons, and a handful of awesome grandchildren. Life should be getting good for her right about now.
It didn’t happen that way. Around the time she turned 80, she was diagnosed with Cancer. Anyone who is in their 8th decade would probably be done shortly after such a diagnosis, but she fought, did chemo, exercised, and cussed out this cancer thing – and apparently won the battle..but not the war. Up until this past July, she seemed to be getting back to normal, and clear of Cancer. We had a wonderful family vacation, and took her along with us. She partied like a rock-star, and wore the rest of us out with her energy.
Fast forward a few months later, and she can hardly move, and is bedridden in a skilled nursing facility. A whole new cackle of heath issues have surfaced, and we believe, without the doctor’s official confirmation, that her new issues are a result of the harsh effects of chemo. She has now taken on Myositis, which, in sum, has made her too weak to even lift her arms, swallow, or breathe properly. She’s on a feeding tube, oxygen, and hasn’t had a solid meal in 2 months. There’s many other problems, but the Myositis is at the top of the serious-meter.
My wife is the one I am worried about.
My wife is a wonderful, dutiful, and loving daughter. She has called her mom every week for as long as I have known her, and for the past 3 months, she has called her daily, and has made several trips to see her. She worries, frets, and cries for her mom to be better, or to be comfortable (delicately saying that the ‘end’ wouldn’t be a bad thing at this point). My wife, and I live on the other side of the country from “MIL.” We have a 6-year old son, and one on the way. We both work full-time.
We are soundly and squarely now members of the “Sandwich Generation” caring for an aging parent(s), and young kids simultaneously. Being ‘sandwiched,’ and not able to help an aging parent effectively has caused a roller-coaster of emotions in our family, and a feeling of helplessness.
One of the most upsetting things that my wife has been feeling lately is an enormous degree of guilt – guilt that she can’t help her mom more, and can’t be with her to comfort her, and keep her company during this difficut, end-of-life journey. This guilt, from a logical standpoint, shouldn’t exist. I have tried to explain to my wife that there is nothing more that we can do, really, within our power, schedules, and financial situation. We can’t make $1000 round-trip visits every month, also taking the time off of work and the missed income that would result from that. It’s not fair for us to be absent from our young child during his first-grade year at school, and there’s no magic wand that could be waved once she got to her mom that would make her situation better. It’s an unfortunate truth – we have responsibilities here that we can’t abandon.
We’ve also nudged, encouraged, and strongly suggested to our MIL that she move away from her home to be closer to one of her kids – so when this day came, she would already be close to family that can help care for her. She refused, and now -being on a feeding tube, she is not mobile, and has to stay put.
My wife has felt anger as well. She’s angry, at times that her mother didn’t make better decisions regarding her care, her personal affairs, and health. She’s angry that her mom worked her butt off until she was 80, when she could have retired much sooner, and now has no time to enjoy her retirement. Angry that very few of her friends, neighbors or ‘churchmates’ have bothered to visit her, or ask how she is doing. Angry that she has refused to consider a supportive living environment like assisted living until just very recently, and now she is too sick to move out of the mediocre-at-best skilled nursing place she is in now. She’s angry, at times, that her mom is so stubborn, and continues to suffer, and won’t go peacefully. This sounds horrible, but, to see MIL with no hair, tubes coming out her everywhere, unable to even enjoy the sensation of tasting food any more, there is absolutely no quality of life any more – you might understand. There’s been very little hope that this will change for the better.
She’s angry at times that she has to watch all of this unfold from the sidelines.
We have felt hope, at times during this process. There have been several times where we have spoken to MIL on the phone – sounding so horrible and unable to speak clearly – that we have thought that she may only have days left in her “life account.” Then, a day later we will speak to her again, and she is almost spunky, clear-spoken, and may have actually stood up next to her bed (with a little help from the nursing staff). Is she getting better? Will she surprise us? Are we giving up on her too soon?
In the end, we have to stop and realize that all of the emotions and feelings that have come up during this process is only because we love MIL deeply. She is such an important part of our family, and it is sad, and seemingly unfair that her physical presence with us will be coming to an end. We feel guilty for not showing our love more, angry that we have no control, and hopeful that there will be a resolution and that her suffering will stop – whatever road that may take.
For now, I try to remind my wife that we are human – not superhuman – and that her mom does know how much we all love her. We’re doing our best, and that’s all anyone can ask of us.
*** The inspiration for this article was inspired, in-part, by reading Alzheimer’s – My Mom is My Hero – Lisa Hirsh’s story of her growing love and frindship for her aging mom who is suffering from Alzheimer’s.