Gail Sheehy: Having ‘The Conversation’ With Aging Parents

Two-thirds of Americans admit they haven’t talked to aging relatives about future care. The time is now

“Dad, you shouldn’t be driving anymore.”

“I haven’t hit anyone yet!”

“You ran over Mrs. Peabody’s cherry tree.”

“That tree was half dead anyway,” Dad growls. “And so is Mrs. Peabody!”

Are you dreading a conversation like this over the holidays? It’s that time of year when we are confronted with signs of aging in our parents that are not evident in long-distance phone conversations. One friend of mine was shocked to find her father on a ladder, stringing Christmas lights despite his heart condition. When she learned he was having chest pains and told him she’d drive him to the hospital, he exploded in rebellion, jumped in his own car and peeled away.

Not long after that Christmas, she got The Call. Her father ran a red light and hit another car. And didn’t remember how it happened.

Was it his heart? Or maybe his mind? You don’t want to wait until a crisis like this to have The Conversation. Two-thirds of Americans admit they haven’t talked with a family member about providing them with care in the future, yet most Americans believe that a family member will “be there” to care for them. The best strategy is to start the conversation with your siblings before the crisis.

Pick up the phone before a holiday or send around an e-mail and suggest everyone think about this: When the time comes, what is each of us best at? Many people have told me they made notes in the margins of my book Passages in Caregiving and sent it around to other family members to do the same. Mom and Dad may be eager to participate in The Family Meeting. More likely, they will resist, fearing that if they acknowledge needing any help, they will lose their independence.

Don’t wait until a life-threatening illness adds more tension, or your loved one isn’t well enough to take part. By the time you get The Call and find yourself expected to assume the role of primary caregiver, your siblings may become conveniently absent. Months or years later, when you have to make the crucial decision about where to place a parent, you can bet that the sibling who lives farthest away and has been least involved will call up and say, “You don’t know what you’re doing.”

Ask your parents to sign a written request to release their medical records to you. Fax the documents to their doctors. Now you are able to boil down the main points into a cheat sheet to send to family members so everyone is on the same page. Once the medical history and contact information on Mom and Dad’s doctors is in their hands, they will be more inclined to help (or feel guilty enough to do so).

Sometimes it’s a creeping crisis. My friend Anne confided, “Mom’s not making a lot of sense. She’s been falling a lot. Maybe, it could be, who knows, signs of dementia?” These are the first hints of a chronic caregiving crisis. Call the closest chapter of the Alzheimer’s Association to be referred to your local diagnostic center for a full work-up. The organization will help you even without a diagnosis of cognitive illness.

If you and your family members work and live in different states, you may need to hire a geriatric-care manager. These are usually social workers or nurses who have the skills to assess the needs of your parents and the rest of the family. They can recommend and negotiate for services. Private-care managers can be expensive, but in the first weeks after a health care crisis, even a few hours of their guidance can save you from bureaucratic brush-offs and blind alleys.

Suppose Mom or Dad refuses to meet with a care manager? “I don’t want a stranger telling me what to do” is the usual response. Break the ice by arranging a low-key meeting with a “friend” of yours. Let your parent and the care manager discover mutual interests and maybe set up another visit or an outing. The key is to establish trust.

The best chance of success in a family meeting is to have it led by a neutral facilitator. This could be a geriatrician or a social worker who is familiar with your parent’s health history. That will take you out of the line of fire. Have a list of your own questions and ask your siblings to bring theirs.

How long will the family meeting last? Oh, not more than the remainder of your parents’ lives.

Editor’s Note: Journalist and lecturer Gail Sheehy is the author of 16 books about adult life stages, including Passages in Caregiving: Turning Chaos into Confidence. This story appears in USA Today

14 comments so far.

  1. avatar Joan Larsen says:

    Most of us have heard of the disaster stories of friends having to deal with their parents — but it can also be their spouse — and something has to be done — and fast.  My father-in-law, a captain in the coast guard who was used to be in charge, drove the largest Cadillac on record and began to drive well over the center lane.  He would speed up rapidly and then take his foot off the gas entirely so that we jerked down the highway on top of it.  He would not give up the car.  So I called the chief of police, telling him that he must follow him, arrest him, as he was a menace on the road.  The answer:  unless he killed someone, the drivers license could not be taken away — unless his so did so in a court case.  I cried, saying to the police that someone in his own family could be killed and then he would know and be responsible.  It didn’t work and we could not alienate this leader of men.  Only an illness forced the situation.

    My husband and I learned from that, promising that if we saw any type of behavior that was not right, we would be honest and tell the other right away.  I also spoke to all my children, saying the same thing — but best of all, my friends.  Friends make pacts together.  I like that.

    I like Gail’s idea — particularly the ones that have a person not a member of the family who is the go-between.  . and even I could pretend it was a friend I was bringing over to meet them. 
    But actually, all this should be done the earlier the better.  I have friends with dementia in thier 60s — so it is something so much more easier to discuss by that age and things written down.

    The result of doing nothing more often than not causes terrible division between parents and children when they should be close.  We tend to delay far too long — and often the result is hellish as I found. 

    The other way I have found it can work is as the daughter to say to the parents that just in case of accidents or other things, I want them to know what I want done and I want to put it in writing for them for we never know.  It opens a conversation much needed and if done right, this may open the way. 

    We make it hard by delaying.  . and can destroy our relationships in the process.  It should be high priority as soon as possible.  Joan

  2. avatar Linda Myers says:

    Not only on WOW, but other forums as well I read conversations on “dealing” with aging parents and wonder if aging parents are seen as the gift for those lucky enough to pick up the phone or talk to them.
    How long will the family meeting last? Oh, not more than the remainder of your parents’ lives
    The meeting will become the memory soon enough! Enjoy the time you have.They spent years cleaning up after you, having you be totally dependent on them for your needs, worried and wondered if your behavior would be hazardous and somehow made it to old age. You should be so lucky, not all are.

    • avatar Joan Larsen says:

      Linda . . . You are so right.  “Dealing” is a word that should be banned — and your attitude is the positive one that often we do not realize until our loved ones are gone.  WE are going to be them.  Do we want to be “dealt with” like the plague???

      I think we are caught often into how to deal with the unknown — we know what we want to say but we are not sure of responses and where we go from there.  It is so much more difficult when you love them so and you don’t want to hurt them ever —

      Anyhow — I loved your response which was right on.  Joan

      • avatar Linda Myers says:

        My parents both said they would never go to a nursing home or be dependent on another and neither of them did. My grandmother signed herself into a nursing home and said the day she went there, five years was her limit and she died five years to the day. During the five years, I never heard or felt my mother reacting as if she was dealing with her mother, although the numerous trips to another town were not always easy.
        And I do know elderly people who tend to feed off of their care and at times creating chaos in the process. So it would make me wonder in situations such as these, who is really “dealing” who. Until they stand at the casket and experience the empty place that now exist, birthday’s, holidays, etc. the clearness will not be part of their lives.
        Linda

  3. avatar Baby Snooks says:

    The most important consideration is the financial consideration of future care as a growing number of people are discovering only after the need for long-term care arises and these geriatric care managers are a godsend although much moreso if used for planning for care rather than dealing with care.

    Medicare does not pay for everything and often a family is faced with literal bankruptcy once bills start piling up. 

    Most have to accept the reality of Medicaid in terms of long-term care and that presents problems with regard to assets. Transfers and trusts can solve the problem. But if not planned properly there will be problems with the estate and Medicaid can and apparently will go after the assets as will nursing homes. 

    Medicaid presents problems as well since it also doesn’t cover everything and so the children will still have to pay for some care out of their own pocket. 

    One of the problems I have with “Obamacare” is it really does very little to improve things for our elderly. I firmly believe we will eventually have to have universal health care and the wisest thing would have been to address the problems of Medicare/Medicaid and go from there.

    And the cars. In most states there are few restrictions and few requirements as long as someone can pass the eye test when they renew the license and have insurance. As long as they have insurance, well, they’re still king or queen of the road.  Until they kill someone. Then everyone wants to know why anyone had let them continue to drive.  And why anyone would allow them to continue to drive after they have killed someone. 

    We let drunks keep their licenses even after they have gone to prison. So obviously we are going to let the elderly keep theirs as well no matter how many tickets they’ve gotten or accidents they’ve been in.  Even though some of them become as dangerous on the road as the drunks. And even after some of them have gone to prison.

    A friend of mine’s mother became the proverbial “bat out of hell” and loved to “drag race” and finally got one ticket too many and so my friend and her brother took the keys and the car and told her if she wanted them to they would go to court and point out their mother was 90 and doing 90 in 30 mph zones. They compromised and gave the keys to the maid and “Miss Daisy” finally moved to the back seat.   

    It’s hell to be poor. It’s also hell to grow old. Especially for the children.  My parents died relatively young and so I didn’t experience what many of my friends have. My mother didn’t drive but my father did.  And even relatively young he had a couple of scary accidents the last couple of years and so I constantly worried and after the last one suggested maybe I should move back home and drive him to work and pick him up.  I heard what everyone else hears.

    I suspect it’s the last vestige of youth that none of us willingly give up. Until we’re forced to.  

  4. avatar D C says:

    My father died at 45 and my mom at 67.  Of course my mother couldn’t really drive very well from day 1, so no changes really.  I remember when she was staying with me that first week after my youngest was born and went to take the two older ones to school.  we had one of those brick pillar mailboxes at the end of the driveway and she veered over and knocked it off it’s foundation.  My mother in law died at 67 also, but she was a great driver  My father in law is now 84 and he still drives all over the place in rural north carolina.  His people live well into their 90′s so we probably won’t have the talk this year.  Heck, he gets around better than I do some days.

  5. avatar Rachel M says:

    My sister lives near my Mom so if she acts any different other then how bizarre she is now so she will see how she is doing. We will put her in a home and take away her car if she gets bad. Thank god that at 75 is she is doing great.

    I live 1900 miles away from them as I have a mental condition which gets worse with contact with her even with the meds I take for it. I realize that I will end up back there if she is unable to take care of herself. She is marriied but he can not take care of himself and if he starts having problems then it is his sister, brother-in-law and niece responsibily and not mine or my sister.

    I am unsure how her will is even though I have asked but I do know where she has her money (my sister and I are on her accounts other then her IRA and pension money), the house is in her name [her husband has forgotten that :)  ] and her safe deposit box has my sister on it.

    We will probably not be helped my brother as she does not have the funds which mades it worth for him to help out.

  6. avatar Chris Glass` says:

    My mother had the talk with her children when she first developed breast cancer. She was comfortable with the decisions made at that time. She survived the first round of cancer and the mastectomy but not the lung cancer that developed later. We were all comfortable with her final wishes, hospice, as well as those selected to handle her affairs.
    My father-in-law was completely different. He was mentally unstable, stubborn and secretive. He refused all offers of help. We knew he had issues and shouldn’t be driving but according to the law our hands were tied and we could do nothing unless he asked for help or had an accident. One day he ran a light causing an accident. We were called to the hospital and at that point we were able to get help for him. He totaled his car so driving wasn’t an issue after that. I took over his care because he had to be taken care of physically and had no other choice. When he was enrolled in the VA system a wonderful social worker talked him into giving us medical and financial power of attorney in case be became completely incapacitated. We were finally able to begin straightening out his affairs.
    I have had the talk with my own sons several times. At some point I will willingly sign a medical and financial power of attorney before I get to the point I can’t make a rational decision for myself. I think the talk made them more uncomfortable than it did me. I don’t want them to have to go through a court system to be able to care for me in the future.

    • avatar Baby Snooks says:

      The financial considerations are the hardest to deal with but the most important and the ones that have to be considered the most carefully particularly in terms of joint accounts and powers of attorney and while we don’t like to think about it, children often are tempted to do things on impulse believing they are merely “borrowing” the money and that has happened in my life and the golden years of a friend’s mother turned into a battle royale in the probate court as she and her sisters battled their brother over his “borrowing” from them as well as from their mother.  The hardest to deal with but they have to be dealt with.  In two other situations the mother didn’t trust anyone and ended up in a nursing home and in a probate proceeding where the court appointed a guardian who was given sole authority over her financial affairs.  The world is not a nice place.  Probate court in particular.

      An attorney who knows what they’re doing, not all do, can set up “shared authority” which is usually what happens in probate court.  The difference being that the family makes the decisions.  Instead of an outsider who is charging a fortune in some cases for making the decision.  And it happens even when the assets are $100,000 instead of $1,000,000. 

      “How sharper than a serpent’s tooth” often isn’t a matter of an ungrateful child but simply a foolish child.  

  7. avatar Deirdre Cerasa says:

    My late precious Dad, when told his Macular Degeneration had progressed to the point where he could not drive; insisted on driving home with my Mother navigating!!!  He did not have an accident but did not drive again.  It was so hard on him and I believe it contributed to his decline and ultimately to his death at 83.  He also had emphysema and COPD.  When I would go to take them out, I would always ask him if he wanted to drive.  For some reason it made him laugh and feel better about the loss of independence.  He was one of those people who always said that if there were a bridge to Europe, he would be first in line to drive it!!!  Miss them both today and always.  It is very hard when they start to decline.

  8. avatar Erika Muller says:

    I tried so hard to have this conversation with my parents.  But my mother refused to discuss it at all and my father’s attitude was that he was never going to die so what was I worried about?  I had to take his keys away after one too many “Oops” and watch as he gradually morphed into a 4 year old as a result of stroke damage.
    They are both gone now, 10 years for Dad, almost 10 for Mom.  I miss them so much, but I also regret that we never had that talk.  Their last years could have been so different.

  9. avatar Elizabeth R says:

    I guess I’m one of those “aging parents” your readers are ”dealing with”.  With all due respect, I’m not willing to sign anything that releases my confidential medical records to anyone.  At some point that could change, but for now any medical issues I may have are my business.  I’m 74 and my husband is 81.  We have minor physical problems, but overall we’re in good health and mentally competent.  We live independently in a condo and are able to drive.  I still work part time.  My husband voluntarily stopped driving at night a few years ago due to decreased night vision.  I drive on the few occasions when we’re out after dark, taking routes I’m familiar with, wherever possible.  I think that many, if not most, older people voluntarily elect to restrict their own driving when they feel they may put others at risk.  While I understand that some older people may continue to drive when they shouldn’t, I am strongly opposed to license revocation based on age only.

    We have some long term care insurance and have signed all the necessary legal documents.  Although we’re far from wealthy, we could pay for care over a limited period of time.  I suspect that our financial situation is not too different from that of many other older Americans.  Neither of us wishes our life to be prolonged by artificial means should we become disabled by a stroke, massive heart attack, etc.  We do not want to linger in pain and misery should we be diagnosed with late-stage cancer or some other debilitating disease, including dementia, if some degree of functional recovery is not a reasonable possibility.  

    For me, the biggest obstacle to dying in the way I’ve chosen will probably be the medical-industrial complex.  Physicians are trained to “cure” disease, which is a good thing unless you’re in the last 3-6 months of life.  Very sick, very old people are often hooked up to every machine in the ICU–even when death is obviously imminent.  Our state has a “right-to-die” law, although there are very stringent eligibility guidelines.  I hope it will be there for me when the time comes.

    • avatar Baby Snooks says:

      The reality is we cannot plan the “perfect exit” and my second mother as I call her was quite active into her 90s and had a mild stroke and for some reason, despite having some of the most renowned doctors in the country, someone decided to give her a “clot blocker” without thinking about the possibility that she could have a more massive stroke which she did and at which point they couldn’t give her another “clot blocker” and she of course never fully recovered which was heartbreaking for those who knew her.  It seemed such a tragedy although I realized that last month at home with the nurses was also spent with her son and grandson and goddaughter who was really the proverbial daughter she had never had and it was time that perhaps she had never allowed herself, or them, through the years. 
      The reality is I would never have denied her that.  But she might have denied it to herself had she decided she wanted to exercise her “right to die.” 

      It is a personal decision we all have the right to make by declaring we do not wish to be placed on life support systems if there is no hope for recovery. There was no hope for recovery in her case.  But she recovered sufficiently to go home where she wanted to be and spend her last month with her family. My personal feeling is it is a decision we should leave to the Fates so to speak.  And it is a feeling underscored by what happened to a friend who took a “terminal diagnosis” at face value and agreed to what is known as “terminal sedation” which none of her friends believe she fully understood.  She had indicated to several people while she was in the hospital she wanted to go home and have a “second opinion” and then two weeks later we were notified she was in a hospice.  I was the last to see her. I will never forget it. It was so obvious that she had been terminally sedated. At a hospice another friend had founded. Who would have agreed with me that while legal with consent, it was nothing more than murder.  Some call it sneaky suicide.  It is more sneaky murder than anything else.  Her sons perhaps thought it was the right thing. It was the wrong thing.  Even if terminal she would have preferred to die at home.  It was, to be blunt, cheaper to “roll her in, hook her up, and roll her out.”  That is the reality of terminal sedation.  And the reality of “how sharper than a serpent’s tooth” which in this case was a foolish decision made without any real consideration of what was best. 

  10. avatar Elizabeth R says:

    No, of course, we can’t completely plan for the “perfect exit”, but I’m convinced that those of us who don’t want to end our lives in the control of the medical-industrial complex can at least try.  I also agree that it’s a completely personal, individual decision.  I’m entirely aware that my choice may not be acceptable to many.  I’m also aware that an older person’s right-to-die can be abused by exhausted and/or avaricious family members, and that’s one of the reasons for the safeguards in our state law  that are designed to prevent such abuse.

    However, again with all due respect, in my opinion your friend probably met a much more peaceful end than she would have if she had gotten a 2nd opinion that resulted in a few more weeks or months of physical decline and pain.  I hope I have the courage to “walk the walk” when my time comes because I’ve defended the right to die on my own terms for the past 40 years.  It’s human nature to try to prolong one’s own life, of course, and being human I may falter at the end but I hope not. 

    My mother died a long, slow death from breast cancer over a period of two agonizing years of horrific chemotherapy (this was in the 1970s) and other treatments.  She never really regained her health after the initial diagnosis.  I live in another state so was not present for the day-to-day struggles she endured, but I visited a number of times.  Each time she was sicker and weaker as the cancer metastasized throughout her body.  In the end she was hospitalized during her final two weeks and, mercifully, terminally sedated–at last.