Now and Then

My pondering this week has been circling around the concept of quality of life. What are, could be, should be, the perimeters around this? Every person would probably answer that question differently. We know with the option of MAID in Canada the choice can now be made (interesting homonyms when you think about it) to end one’s life if one deems one’s quality of life is not enough to keep living (and you meet the MAID criteria). 

My sister and I were discussing this. She has a brother in law who is special needs, in his early 50’s, now residing in a long term care home as he is no longer able to walk on his own. 

I am supporting a religious sister in a similar situation. 

We wondered aloud why painkillers like Tylenol given out whether the person is in pain or not? The sister I support will not swallow the pills so they are ground up and fed to her with yogurt. You can see how bitter they are when ground up by the look on her face when she tastes the concoction.

She was walking before she got admitted to the hospital on a social admission then many weeks later placed in a care home. In her dementia she was rude to staff and her incontinence was a problem. She would take off her depends in the hallway after having a bowel movement in them.

After being in the hospital with the limited resources there she is no longer able to walk. The system from my perspective has failed her. On the spectrum of one’s final chapter of life and care, as kind and helpful as the home staff are, the system has failed her, is failing her.

Why do I say that? I say that because it seems to me that her quality of life does not seem to be the central concern. The central concern is that as long as we somewhat meet her physical needs we have done our job. There are some quality of life activities that she gets connected to in the home. Music entertainers when they are in, and the other day she was sitting at a quilting table just smoothing down the fabric and enjoying it.

I guess the real question I am struggling with is once again a question of enough: what is enough care? How is enough defined in a checklist for living a quality of life until the end, to natural death?

Suffering is also a part of life, and MAID removes that reality for those who seek it. I am not saying bring the suffering on, I am just wondering about long term effects on the human spirit if we no longer have to deal with  pain. I do not know how I would handle long term care if it was me, or terrible pain and illness if it was me. I just know that when I am with this sister I am constantly challenged to ponder the baseline of what is enough care for quality of life, and wondering if there are better ways through these final life chapter besides MAID. I do not have a medical background, so perhaps I am not even entitled to raise the question. 

Yet, this is what I have seen: 

• Visiting her in emergency ( starting place for hospital placement until a nursing home bed can be found) and seeing her arms black and blue from inserting IV’s in case she may need meds or liquids delivered that way. She was perfectly fine without the IV before arriving in the hospital.
• Seeing her in the hospital in restraints as she kept pulling the IV’s out as she did not like them or understand them. 
• Seeing her physical state deteriorate day after day from being able to walk to having curled feet unable to walk, from eating herself to not having manual dexterity to do that. 

After visiting her in the hospital the day after her admittance there I told the community leader that I would never allow anyone to be put in this situation again if I had access to resources to do it differently. It was like a scene from those old movies in which someone was involuntarily placed in a psych hospital. 

The challenge though is just that: having the resources – be it finance, knowledge, health world connections – to never have to do it again. The reality is that many people are living a long time. We do not have the resources lined up to provide a positive quality of life when they do, when we do. 

I do not know what the answers are, I just know that I need to allow myself to be disturbed by this situation so that I do not become complacent and say it is what it is. From my world of education to my new world of elder support and medical issues, complacency is not an option in either. Serving our young and their families is one of the ways we ensure the elders are cared for too. 

May we be blessed with wise hearts that seek to serve the other in whatever situation they may find themselves.