End of Life Decisions, and the Sandwich Generation

Carl Rogers,  a founder of modern psychotherapy, is reported to have said that once he had worked through an issue in his own life, it was as if someone had sent a message to all his clients saying it was OK now to talk about that now.  It is really true that themes seem to occur in sessions with clients.  It is amazing how often clusters of clients come with variants of the same thing going on in their life at the same time.

One thing that has been going on in my life recently is that people have been dying. Or, they have been diagnosed with very serious, life threatening illnesses.  As a result I have been thinking and talking to a lot of people about end of life issues.  From the standpoint of friend, family, and therapist, I have been looking at this closely.  It occurs to me that at this time in my life I need to work through some of my thoughts and feelings about the end of life.

There are so many complicated issues when we begin to think about the end of life, particularly for someone in the sandwich generation.  That is the generation who are in their fifties and sixties that have elderly parents still living, but in decline.  They also have children of their own and need to make plans for themselves so they do not unduly burden their children, as well as thinking about how to address the end of life for their parents.  Questions need to be answered, among them: Do I have a durable power of attorney for medical directives?  Do I know what I want done, or not done, to keep me alive as I deteriorate?  Have I told my loved ones and family what my wishes are?  What if I change my mind when I get closer to the end?  Would I ever consider overt, active steps to end my life if I were dying painfully, or would I only consider passive choices of non-treatment?  Would I consider not having a recommended, but risky, surgery or not getting a feeding tube?

As we age and deteriorate we begin to lose skills and abilities.  One common example of this is driving.  It is a question we dealt with when my wife’s grandmother was living with us the last couple  of years of her life.  She was very careful about remaining in control of her choices.  We watched her physical balance, eyesight, and hearing decline pretty rapidly.  She knew that this was an issue, so she voluntarily reduced her driving to daylight hours.  Fortunately, if she had to go somewhere that was not on her regular route, one of us was able to drive her there.  But for as long as she could, she tried to keep driving and she fought hard to resist our conversations about taking her keys away or getting rid of her car.  At the end of her driving time, she had reduced herself to a few very short routes one to church, another to Steak ‘n Shake to meet her “walker friends.”  This was a group of elderly mall walkers who had all aged to the point of not being able to walk the mall, but still met regularly for coffee and camaraderie.  She also drove to the hair dresser every Friday.  None of these trips was more than two to three miles from our house and she only drove at non-peak daylight hours.  One day she came in and told us that she wanted to trade her Cadillac in for a new Mini Cooper.  She said she thought it “cute.”  This really concerned us since she had always driven Lincolns or Cadillacs, big heavy, safe cars.  Why did she want to change?  Then we noticed that her car and our garage seemed to have met each other on each side of both her car and the garage door.  She was loosing the ability to navigate in and out of the garage safely, but did not want to admit it.  We talked to her about giving up her car, not getting a smaller one.  She was very angry and told us to mind our own business.  We contacted the Department of Revenue for Missouri to see if there was a way to take her license away.  We were told there was not.  We voiced our concerns with her doctor (whom she trusted and worshiped) he suggested to her that it was not safe to drive.  We compromised by getting her to agree to take a few months hiatus since it was winter and the weather was bad anyway.  So, she quit driving and within six months she died.  The dilemma is about  allowing for dignity and independence while keeping everyone safe.

The point I want to make by sharing this story is that this is just a single example of the kinds of issues that come up for the sandwich generation.  Can grandmother still make financial decisions?  What if some unscrupulous charity or church asks her for a “big” donation?  Is she capable of making a good decision?  Should someone look over her shoulder?  Can that person make decisions on her behalf?  Can they prevent her from spending “foolishly?”  It is still her money, can she give it away if she wants?  Will I recognize when I have gotten to this point and allow others to make decisions for me?

What if family members do not agree with the choices or strategies of the caretaker member of the family?  If they get into fights about taking away the car, controlling the money, or pursuing a medical treatment (or NOT pursuing it), what happens then?  These decisions for families are hard, sometimes explosive, and destructive. Pain from these conflicts can endure for lifetimes.  It is stressful under the best of circumstances, even when everyone agrees.

If you are getting older think about your plans.  Make good plans while you still can identify what you want to be done as you age and prepare to die.  Plan for your health care, your financial care, your surviving family, need to be made so that everyone’s needs are balanced. Make sure that your wishes are clearly stated in a legally recognizable way so that your last months, days, hours are not filled with conflict and torment for you and your family.

I would advise serious consideration of your religious and spiritual beliefs thinking about what you believe about death.  Think about health care interventions, about inherited wealth, and about your responsibility to have all your wishes clearly documented so there is not the additional burden for your family to divine what you want.  What does your faith require of you as you prepare for your end?  What does it offer you in the way of sustenance and strength?

I would also like to put in a word for hospice organizations and workers.  I can never say how very much they helped all of us take care of grandmother as she prepared to die.  They were so caring, so supportive, and so good to her. They made her comfortable and helped her not be afraid.  They helped us get ready for her to go and talked to us about our sense of guilt for not doing more and our anxiety about providing the right amount of intervention and treatment for her so that she could die, comfortably at the age of ninety-six in her home, in our home, surrounded by her family.  She died the fantasy death  most of us wang; quiet, surrounded by love, safe in the bosom of our church and friends.  That happened because we tried to make it happen, but the adventure and journey evolved because of some education and a lot of good intent.  We got good advice from medical experts, religious care givers, and legal professionals.  We talked a lot among ourselves.  We made sure that we were in as much agreement as was possible.  Losing a loved one is stressful, but knowing that you made their end as stress-free as possible gives you comfort.

Hopefully, your journey will go as well as hers did.  It is more likely to do so if you plan for it, talk about it, and think about it before you get there.  If you are elderly, take the lead.  If you are a member of the sandwich generation, take the lead.  There are no guarantees in life, but there are good strategies and plans.  Find them.  Make them. Follow them as much as you are allowed.



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