Burdening Our Kids–Revisited

“I cared for my parents until they passed. What do I do to make sure I do NOT put my kids through that?”
See the source image
An AgingCare.com question (http://www.agingcare.com)
Asked by Sunflowerpower

What is wrong with dying? I am not so sure that extending life to the point of wringing every last drop of breath out of life is the right thing to do. That is, unless one has unlimited financial resources to buy professional care 24/7. We should not have to put a price on elder care but for most people, the child or children end up bearing the work. Are we sure we want to continue extending life when life is a body and no memory? Or a good mind but nothing but pain for the body? I read these stories about all the caregivers doing their best to care for their parents at the cost of their own lives and it is so sad. Been there, done that. I am NOT talking about assisted suicide. I am saying if an older person has no realistic future of living life on their own, what is wrong with stopping life-extending medications?

Not being a burden on our children is a major concern of the baby boomer generation, as I expressed on the first page of “What to Do about Mama?”

I am a baby boomer—part of the ‘sandwich generation’ that is taking care of our elderly parents while still providing support for our children.  As I write this, I am feeling that the time has come.  Baby boomers are on the precipice—getting ready to fall off and land firmly on the backs of our children’s generation.  And they are so young!  They are, after all, our children!  (p.1)

What to Do about Mama? p. 2

And again on the last page:

In the light of my caregiving experience, and with the hope that my children will not have to face avoidable stress, I pledge that: 1) I will not leave my children the burden of my messes; 2) If my children become my caregivers I will not to be stubborn and dead set in my ways; 3) I will relinquish control (at least some of it) to them; and 4) When, in my old age, if I do the things I’ve said I won’t—they may, as I’ve told them, ‘Just show me the book!

What to Do about Mama? p. 303

The issue of extending life is also addressed in the book.

I acknowledge that broaching the topic of death and dying with parents and family members is very difficult and even painful. We may have living wills that specify that ‘no extraordinary measures’ be taken, but how do we and our family members interpret that directive in the midst of a highly emotional crisis situation? The issue is confusing and complicated to say the least—one that presents huge challenges for the elderly and their caretakers.

I would respectfully suggest, however, that it would behoove us all to have this difficult discussion well before the time of need arises so that decisions for treatment are based on our loved one’s expressed wishes.” 

What to Do about Mama? p. 228

The issue of sustaining life with medications presented a major decision making point in the caregiving situation that motivated me to write “What to Do about Mama? See “A Major Decision” pp. 30-32.

My mother-in-law questioned the Hospice nurse about discontinuing her arrhythmia drug citing contra-indications with circulation.  She was looking for a “fixable reason” for her poor circulation, which was causing increasingly numerous ulcers to form on her legs and feet.  We knew, of course, that advanced COPD (chronic obstructive pulmonary disease) caused by a fifty-year smoking habit, is not fixable, and agreed that it was time to have a family discussion about Mom’s medications. My husband consulted his siblings to assess their opinions about Mom discontinuing her heart drugs. The children were all in agreement that their mother had had a good life, and that they would rather see her go quickly and gently like their father than watch her slowly disintegrate. He then had a very difficult discussion with his mother, and she agreed that it was in her best interest to stop her heart drugs.

Barbara Matthews


Hospice Experiences

In response to Joy Johnson’s article

Challenges of dying at home, revisited — The Memories Project

When I worked as an Assessor at the Area Agency on Aging, I heard only rave reviews about Hospice Services.  Our own family experience, which I write about in my book What to Do about Mama? was also positive. 

A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living.

What to Do about Mama? p 170

Families often overlook or do not consider hospice when they feel they don’t need it yet. “There is a tenacious and lasting perception that hospice comes in only when people are on their deathbeds. Of course, hospice does take care of dying patients, but that is certainly not all it does. Hospice also helps caregivers by providing home-health aides. It gives emotional and spiritual support to the family as well as to the patient. Hospice loves to come in and help people enjoy everything they can do in life.

What to Do about Mama? p 170

However, all circumstances are not the same.  My daughter-in-law’s mother passed away surrounded by family.  Her husband, sister, and children all pulled together and shared the responsibility for her care, augmenting the services hospice provided.  Her wishes were honored and she spend as much time with family as she could.  I was told that when she died, there was a smile on her face.  I suppose you could say that her death was about as good as a death can be. But this family communicated openly and confronted death according to their mother’s wishes.

 My son-in-law’s (SIL) mother also had hospice services at home.  But there had been more denial and less opportunity to let her wishes be known. 
(See previous blog: The We Don’t Need It Yet Phenomenon)

Hospice had brought in a bed so SIL’s Mom could sleep in a room downstairs.  During the night she got up to go to the bathroom and fell.  She had no hands-on-help because her husband was sleeping in the bedroom upstairs.  The next morning the hospice nurse sent her patient to the local hospice facility—to be more safe, I presume. This is not the place she wanted to be, and she passed away soon afterward.    

Talk about it beforehand. You won’t regret that you did.