13 December 2015

Dying, Death, and Respecting Final Wishes

It's been a few weeks, but they have not been unnoteworthy.  Mid~December is upon us and we're barreling to the end of the year rather quickly.  In many ways, it doesn't feel like December, certainly not as far as the weather is concerned anyway.  At seventy degrees outdoors and oh so much warmer indoors {we were using the oven as well as forgetting to turn off the heaters}, I felt as tho these past few days were a lil too unseasonable for my taste.  The ACs been on for the last several days.  I hope it's the hurrah for the year.

But in other ways, this December feels appropriately dreary and mournful.  Jerry's first wife had died ten years ago ten days ago; and that's when we learned that Jerry's mother failed her partial barium test {this measures and gauges the swallow reaction to the various thicknesses of fluids}.  At first, Jerry felt that this was bad timing in general {not that he was saying that his mother could have picked at better time, she couldn't have, because she didn't choose to stop swallowing, ya know?}.  But I felt a bit differently and when I explained to him my perspective, he thought that made some sense.

Last year, my mother died on December fifth; and lots of folks said about it being so hard for the holidays for those of us mourning her death.  I felt differently.  I felt like December is an entirely appropriate time for death to occur, because it is when the natural world in the northern hemisphere is lying dormant, having "died" for the year.  I felt like the dreary weather of damp, cool days and foggy nights was in keeping with my frame of mind.  I felt like it was suitable that the world around me was a reflection of my inner world.  It felt like it would have been wrong for June's warmth and sunniness and laughter and happiness to be when Mom died, so to me, it felt super appropriate that my mom died in December.

So this year, with the combination of two important women's deaths and another impending death of a woman who is loved by us both; what would be a better time for death to occur?  Dying is the process of death, and death is a necessary part of life.  Lots of folks tend to forget that death is inevitable and tend to prolong someone's misery well past the end of any meaningful quality of life for that person, so that that person is just existing for some one else's peace of mind or benefit.  That's pretty selfish, especially when that is NOT your own life but someone else's life you are messing about with.

Jerry's mother is dying.  We brought her home, to a calm loving environment where we can see to her comfort and focus on seeing that her wishes are respected and carried out.  We know that not everyone agrees with her do not resuscitate orders or her advanced directive that specifies her wishes.

We are also aware that many folks really are not very well educated on the process of dying and how smart the body is.  There is a reason that the body ceases swallowing when it does, and that is because the systems are shutting down so that stress is minimized.  Swallowing is associated with taking nutrition and processing that food and liquid is demanding, it puts a huge burden on the body and incorporates everything from the mouth to the anus.  All the stages of digestion, producing acids to breakdown food, and extracting the nutrients, and using them where they are needed and storing them, and eliminating the waste involves a huge expenditure of energy the body doesn't have the ability to produce because various systems are either malfunctioning, shutting down, or shifting into another stage due to the dying process.

If you feed someone who cannot swallow, you run the very high risk that they will aspirate that liquid or food into their lungs and that sets up infection, fever, and other demands the body is not capable of addressing at such a time.  You are putting that person thru great discomfort, pain, and anxiety in order for YOU to feel better about providing nourishment.  Feeding tubes are perhaps appropriate at certain times, but not so when a person is dying and in the end stages of life.  Again, the demands you are placing upon the body are enormous.

Carolyn is not capable of sustaining a feeding tube.  A few years ago, her aging body's inner tissues were slow to heal and infection would easily set in when she had an internal bleed such as a scratch on her esophageal sphincter during an endoscopy.  That scratch which was not a tear or leak, but a relatively minor scrape resulted in a two week hospital stay due to the slow healing time and the infection that developed.  A feeding tube that is inserted into her stomach via an incision in her trunk is more likely to be a greater danger, involving completely unnecessary stresses and demands on her body.

There are many other things that can be addressed, but the absolute bottom line is that Carolyn expressed her wishes to an attorney who drew up her advanced directive, and also discussed those wishes and concerns with several others, including my husband {her son} and myself {I was her caregiver for a few years}.  I urge YOU to discuss your own wishes with your loved ones, and be sure to clearly state your wishes in a living will or advanced directive.  Encourage your loved ones to do the same.  It eases the decision making process for you and your loved ones when that time comes, as it does for us all.

A few weeks ago, before this development with Carolyn, but after her health was already in swift decline, a distant family member had voiced to Jerry that he should make sure that I didn't arrange Carolyn's funeral, because "after all Debra didn't even have a funeral for her own mother".  I will do exactly the same thing for Carolyn as I did for my mom:  RESPECT THEIR WISHES.

My mother did not want the obituary, the viewing, the memorial service, the casket, the headstone, the burial, etc.  She opted for cremation, and counted on us to notify whom we wished, in whatever way we wanted to.  So that's what I did.

Carolyn prearranged most of her funeral details in 1992, months after her husband had died.  More recently, she discussed with me often what suit she wanted to wear, how she wanted to be arranged, that she wanted a viewing, memorial service in the funeral home, and a graveside service.  She discussed so many details that I have very little doubt that for her these things are of great importance.  So I will be sure that I do those things that she wants when the time comes.

In the meantime, we see that Carolyn is as comfortable as she can be.  She is bathed, lotioned, powdered, and her linens changed so that she has fresh sheets and night gowns next to her thin skin.  She is given appropriate medication via appropriate methods, so that her anxiety and pain are addressed.  She is soothed and comforted, with familiar music that she prefers, temperature that is not extreme, light that is not harsh, darkness that is restful, and a limit to any commotion that might be taxing and stressful for her.  Sometimes we talk to her, she doesn't respond verbally and sometimes doesn't do so at all~~but the auditory system is one of the very last things to shut down, because it is a receptive skill and not requiring a response.  Sometimes we give her quiet because that is what she seems to prefer at times, especially when deeply asleep.

So our main priority at this point is to see to her comfort.  Hospice is involved, so we can ask any questions, express any concerns, and seek assurances and advice.  We got this; we love her and feel that she deserves our love right through to the end.

AGAIN:  I urge YOU to discuss your own wishes with your loved ones, and be sure to clearly state your wishes in a living will or advanced directive.  Encourage your loved ones to do the same.  It eases the decision making process for you and your loved ones when that time comes, as it does for us all.

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