Jul 24, 2009

On Hospice Care and the Slow Decline to the Hereafter

June Maples in late June of this year

I have not been much interested in the blogosphere the past week due to the poor health of my grandmother, who is affectionately known to her family members as "Grani." Her kidneys are slowly shutting down, and she and my grandfather made the decision a few days ago to opt for hospice care at home in favor of a medical prolongation of her life in a hospital or nursing home setting.

Dialysis might provide her with a few extra weeks or months of life, but this would mean multiple trips per week to a nephrology center. I suppose "quality of life" is a relatively meaningless term when a good portion of one's waking hours are spent being hooked up to a machine that does the work of a pair of worn-out kidneys.

So despite the desire of her younger family members for Grani to live forever, we are resigned to the fact that she is in the absolute twilight of her life.

Hospice is a mixed blessing. God has given us an uncertain time frame - perhaps a sort of advanced warning - of Grani's demise, so everyone who wants to say goodbye will get a chance to do so while she is still coherent and somewhat pain-free. Yet the American insurance system will only pay for a few hours a week of home visits by a nurse and health aides, so the family is thus responsible for 95 percent of the care she needs.

Funny: if Grani chose the hospital or a nursing home, 100 percent of these costs would be absorbed, and she would have access to the latest technology and monitoring equipment in her last few weeks on Earth. Yet because she chooses to die in the comfort of her own home, the most that Medicare will pay is for about 10 hours of care per week.

However, the extra work of caring for a loved one is in itself a sort of blessing. Certainly there are activities I would rather be doing than cleaning up after an elderly person who can no longer make it to the bathroom - the Tigers are playing well, and the end of the summer semester could mean a few days relaxing in the hammock - yet I would not shirk this responsibility. I would rather be "burdened" by helping out in this way and taking care shifts than to be denied the opportunity to say goodbye to a person who has meant so much to me.

So I write this post with a lump in my throat, brought on in part from being tired and rundown but mostly because I have to watch my grandmother slowly die. I also have to watch my fiercely independent grandfather suffer, as he watches his wife of 72 years inch closer to death, all the while knowing that he can do nothing to prevent the love of his life from dying.

And all the while in this unfolding drama of death I have to remind myself to be thankful, since most folks do not have the luxury of knowing that the end is near for loved ones, and many people would gladly trade places with me for a few final hours.

Bittersweet, these next few weeks.


Anonymous said...

sorry to hear about your grandma, mike, hope she is peaceful

Carol said...


I am truly heartbroken over your grandmother's health. It's so difficult to just sit by when the natural thing is to want to cure them.

But you should take heart in that her last wishes are being honored. That she has allowed herself to be surrounded by her loving family instead of a bunch of sterile strangers.

Cherish these last moments, support your grandfather, and keep those many years of memories alive. Your Grani may fade and pass, but nobody can ever take your memories from you. Ever.

Take care.

Anonymous said...

Having experienced what you describe, I can only suggest that feeling the way you do...your decision is right for you and your grandmother.

Painful as it was to witness the demise of a loved one, I would never have chosen not to provide my personal care at home as well as I was compable. Good luck Mike and God bless.

kateb said...

I'm so sorry to hear you're having this experience. I'm going through something like it with my Dad.

It's a good thing that they are making their own decisions - and sometimes I think it's rougher to have someone you love go through this than it is to be sick yourself. There's something elemental in the lack of control, the inability to do anything to change the course of these things.

My heart goes out to you - and my prayers.