Friday, September 18, 2015

Review: Being Mortal

Dr. Gawande was raised in India, and in this book he talks about how the elderly are treated in his birth country, and then how he was at first surprised, and then understanding, at how they are treated in the United States.  From the comforts once afforded by close family, our society has grown to prize freedom and independence – both parents and children are happy when children move off on their own --- often to far ends of the country, or even the world. 
The close family ties Dr. Gawande grew up with are the exception in America, and he does view our new norm with understanding and sympathy --- and a realism many don’t consider.
“Everyone grows old,” he notes, and with our good medical care, this is a much more extended, gradual process than in times past, where often death was sudden.  Now the point at which one begins to “feel the pains of old age” and when death actually arrives can be many years or even decades apart, a time of gradual decline. During this decline, many elderly become unable to do some of the basic things of living as well as they did in the past, and perhaps at some point not even at all.  Dementia and Alzheimer’s are two particularly cruel illnesses which affect most elderly at some point, to some degree.  And that degree is a large focus of this book.
When is mom or dad not able to take care of themselves, and when must the child step in to help, and when must he step to take charge?  Many don’t distinguish between the two, and “helping” often means putting mom or dad into assisted living, but as Dr. Gawande notes, most assisted living facilities are anything but assisted “living”.  They are places where caregivers and administrators set a routine, a schedule for everyone to follow:  when to wake, eat, get entertainment, take medications, and when to sleep.  This schedule is set for the most efficiency of the facility, and the safety of the residents:  to keep costs down and safety up, and the children who are “helping” mom or dad ---and who are paying the bills --- are then kept happy as they can be.
But mom and dad aren’t.
Dr. Gawande notes that old age homes are too concerned about safety, and lawsuits.  They have a staff which isn’t concerned about residents’ priorities or needs, but rather with timeliness and neatness.  Safety is valued over happiness.  He notes that the three plagues of nursing home existence are boredom, loneliness, and helplessness.  He provides real life examples of people in common facilities , and examples of exceptional facilities which challenged the status quo. 
One facility put green plants in every room, planted vegetable and flower gardens in the yard, brought in two dogs and a cat ---- and had parakeets in every resident’s room.  Elementary school children were brought in to sing, play, or even exercise --- and the residents joined in.  It was chaos to begin; it was change.  But what were the results?  He cited examples of the depressed mute who spoke, the non-ambulatory who walked, and of the bed-ridden dying man --- who went home!  People named the animals, children were patient with Alzheimer’s limitations, and residents found something to live for.  In two years drug use fell 38%, deaths 15%.  Having a degree of self-control improved lives, and residents were given freedom to choose when they woke, ate, went to bed, and staff was encouraged to interact with residents, and facilities/equipment/space provided for them to interact with each other --- even if there was some risk involved.  And the people were living happier lives.
I think this is a great book to read (esp. pages 100 – 150) for anyone caring for (or about to care for) an elderly loved one, and worried about all those things loved ones worry about.  This book will help you get past your worries about how good a job you are doing, and to being more considerate of how your loved ones want to live.  (I am now on the board of an organization caring for 90 developmentally disabled adults, many of whom are getting on in years.  This book will be a great resource for our implementation of even more loving care there.)
Having cared for my mom for seven years, and now coordinating a caregiver’s support group, I have seen some people present the loving care espoused in Dr Gawande’s book --- and their witness has given me great comfort.  I have seen many come to the caregiver’s support group afraid, wanting to do what is right, but not knowing where to begin; they were helped by other caring people there, who had learned without the benefit of Dr. Gawande’s book. 
I recall K., who’s dad at some point began to be confused on how to dress himself, sometimes wearing pajama tops for a shirt or mis-matched shoes ---- much to her mom’s horror:  “You can’t go out like that!”  But K., in love, calmed her mom down:  “Mom, who cares?  No one is watching, and if they do, so what!  That’s how dad feels comfortable; let’s go shopping.”  And she took her dad everywhere with her and her family as long as he was able.  What an example of love.
And I recall ME., who sat and looked into her husband’s eyes, holding his hand and offering encouragement, as he struggled for long periods of time, struggling to find the words to express his tangled thoughts.  But she waited patiently, hours each day, searching HER memory for where his might now be lost, so she could encourage him.  She loved him with a patience I’ve never before witnessed in my life.
And I recall H., who at 90 still carried his beloved wife around their apartment, and fed her every bite of food she ate.  And my own mom, who wanted to wear her favorite gown every day --- without ever washing it, and so I bought her 10 like it so she could wear the same one every day (as far as she knew).  And F. whose children moved her and her Alzheimer’s-stricken husband into an assisted living home near where they lived: “I know they mean well, and they want him safe, but he knows no one there, and is becoming even more confused and troubled ---- and even though we are now nearby, they don’t visit any more, maybe even less.”  And so F. told her children she was moving back to her home, and would take care of her husband there as best as she could, as safe as she could, promising to hire assistance as needed, and she now attends our monthly caregiver’s meeting smiling, and is an uplifting presence to others.
I can recall many dozens of other stories like these, of people so loving their parents and spouses, putting aside love of themselves and convenience in their lives, to put comfort and love into their parents’ and spouses’ lives. 
Honor thy father and thy mother, that you might have eternal life.  I have seen this commandment put into action, and I am so blessed for participating in its witness. 


  1. I haven't been by for a while, and so have to catch up on reading here....
    I really like this post. In my own circumstances, I made sure my parents had control over their own lives as much as they were able in spite of their diminished capabilities, even when it was a great inconvenience to me. I knew "helping" them meant helping, not taking over or controlling what they did. When some aspect of their lives did reach the point I had to take control, I did so knowing what they preferred, and tried to keep things as they would want them, not to suit myself. If I had to make a change, I asked them if it was okay, and told them why we had to change something. Most of the time they were very congenial about it. If not, we discussed it until they saw I was right. :-) :-) Not really. Actually, many things that would have been better did not happen because they did not want it, such as having an outdoor elevator installed at their home, or buying a handicapped van. So, rather than override them, we struggled. But them having self determination was more important to me than my convenience.
    Recently I was speaking to one of my brothers who was not at all involved in their care. I told him it wasn't until after my dad died (at that point taking care of them for 7 years) that my mom allowed me to sign checks. She had been disabled with a severe stroke for those seven years. During that time I prepared the checks to pay the bills, but would have one or the other of them sign them, because they were still able. It was a big pain in the *dupa* to do so, but I realized it gave them a sense they were still in control of their own lives. My brother was shocked. Very shocked. Because he is the sort that would have taken over and forced changes such as taking control of their bank accounts and not even noticed he was steamrolling over them. He would have done what was convenient for him regardless of the effects on them, treating them as incompetent children.
    I ask myself, what is caretaking? What is the first principle? My answer: Do unto others as you would have them do unto you. I asked myself, what would I hope for if I fell ill and could not help myself? How would I want to be treated in my own home? The answer was clear.
    I often wondered why nursing homes and assisted living facilities didn't build right next to schools. I thought about how the kids would have instant after school care, and how they would benefit from doing crafts and homework with old folks acting as grandpa's and grandma's, or even sitting and talking together on a bench in the sunshine. I thought about how the older folks would enjoy watching and hearing the kids at play. It never occurred to me the reason old people are locked up isolated in facilities was because of an emphasis on safety and lawsuits. Very illuminating.
    Tom, God has prepared you well for the role He is leading you into. Interesting how when we turn our lives over to Him, in hindsight we find He was preparing us to serve even as we were unaware of being trained. And funny how true the saying, in losing our own lives, we find our life.
    God bless. ~ Fran

  2. Fran, in the years we've communicated I've come to know what a caring person you are, and yet another blessing in my life.

    I just finished a two-day offsite meeting with the board and lead administrators of the organization I joined which cares for the developmentally disabled. While there, one of the biggest problems we discussed --- and devised new plans for --- was the recruitment and retention of truly caring individuals, for the people in our charge. I learned how hard it is to find these types of people, especially in the younger generation, which is so "me"- focused. One of the areas we are going to focus our recruiting on is former caregivers, whose loved ones have passed --- these people have demonstrated their caring, and are the type of people we so desperately need (while this organization cares for about 90 people, it has over 100 who have been on a waiting list over 25 years!)