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It was a promise Matt Perrin wasnt able to keep.
Ill never take away your independence, hed told his mother, Rosemary, then 71, who lived alone on Cape Cod, Mass., in a much-loved cottage.
That was before Rosemary started calling Perrin and her brother, confused and disoriented, when she was out driving. Her Alzheimers disease was progressing.
Worried about the potential for a dangerous accident, Perrin took away his mothers car keys, then got rid of her car. She was furious.
For family caregivers, this is a common, anxiety-provoking dilemma. Theyll promise Mom or Dad that they can stay at home through the end of their lives and never go to assisted living or a nursing home. Or theyll commit to taking care of a spouses needs and not bringing paid help into the home. Or theyll vow to pursue every possible medical intervention in a medical crisis.
Eventually, though, the unforeseen will arise after a devastating stroke or a heart attack, for instance, or a diagnosis of advanced cancer or dementia and these promises will be broken.
Mom or Dad will need more care than can be arranged at home. A husband or wife wont be able to handle mounting responsibilities and will need to bring in help. A judgment call this will only prolong suffering, theres no point in doing more will be made at the bedside of someone who is dying.
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We want to give loved ones who are sick or dying everything we think they want but we cant, said Barbara Karnes, 78, an end-of-life educator and hospice nurse based in Vancouver, Wash. And then, we feel weve failed them and guilt can stay with us for the rest of our lives.
She hasnt forgotten an experience with her mother-in-law, Vi, who moved in with Karnes, her husband and two children after becoming a widow 30 years ago. At the time, Vi was in her 70s, weak and frail. Karnes was working full time and keeping the household going.
My mother-in-law and I got into a disagreement, I dont remember what it was about. But I remember her saying to me, You promised you would take care of me, and making it clear that she felt Id let her down. And I said, I know, I was wrong I cant do it all, she remembered. I still feel bad about that.
No caregiver I know sets out to deceive another person: Its just that none of us have a crystal ball or can predict what the future will hold, she said. And the best we can do isnt always as much as we thought was possible. We have to figure out a way to forgive ourselves.
Richard Narad, 64, a professor of health services administration at California State University, spent months after his wifes death in December 2011 mentally reviewing the last hours of her life before achieving a measure of peace.
His wife, April, was diagnosed with Type 1 diabetes at age 5 and was legally blind when the couple married in 1994. A year later, she had the first of a series of strokes. Eventually, April was diagnosed with congestive heart failure. In the last 18 months of her life, she was hospitalized 13 times.
April Narad had told her husband she wanted full code status in the event of an emergency in other words, do everything possible to keep me alive. But she was nervous about his willingness to honor her wishes because his own end-of-life views differed from hers.
I think certain care is futile and you need to give up earlier, he explained.
In the end, April was rushed to the hospital one night after dinner, gasping for breath. There, Narad directed medical staff to pursue full code interventions. But when a physician came out to tell him that death appeared inevitable, Narad remembers saying, Well, if thats the case, just call it.
Had he broken a promise to insist that other treatments be tried? Narad spent months wondering but eventually accepted that he acted in good faith and couldnt have saved Aprils life.
With illness, older couples can end up re-evaluating commitments theyve made. Kathy Bell, 66, of Silver Spring, Md., promised her husband, Bruce Riggs, 82, that shed stay with him through all the changes in our lives when they married in 1987. Then in August 2011, he received a diagnosis of Alzheimers.
The couple moved into a senior living facility, but as Riggs condition worsened he had to go to a memory care facility in 2014. The following year, Bell had lunch with a man whose wife lived at the same facility. He told her his therapist had recommended he start dating.
That planted the idea of possibly doing this myself at some point, Bell said, and two years ago she met a man who has become a regular companion.
Does she feel shes broken her promise to her husband, who was committed to a monogamous marriage? No, I dont, Bell said, adding that its not clear whether he knows me at this point. He doesnt talk. The way I view it: I still love him. I still go to see him. Im still taking care of him.
Promises can be explicit spoken aloud or implicit, understood without direct communication. Both kinds can inspire regret.
Debra Hallisey, 62, a caregiver consultant based in Lawrenceville, N.J., describes making an unspoken promise to her father, Don, when he was diagnosed with congestive heart failure in 2014. Their agreement, which was never voiced: Neither would tell Halliseys mother, Doris who has diabetes, mobility issues and is legally blind how sick he was.
Debra Hallisey and her parents, Don and Doris, celebrating their 60th wedding anniversary.(Courtesy of Debra Hallisey)
I knew he was shielding [Mom] from knowing the truth. When she would ask questions, he wouldnt say anything, Hallisey said. Because her mother was disabled, Hallisey accompanied her father to doctors appointments.
When Halliseys father died in February 2015, Doris was profoundly shocked and Hallisey was overcome by remorse. It was then, I said to my mother, Mommy, there are no more secrets. If something is wrong, I am going to tell you, and together were going to determine the best thing to do, she said.
In line with that promise, Hallisey has been direct with her mother, who uses a walker to get around her home in Somerset, N.J., and has round-the-clock home care. If and when Doris becomes unable to walk, shell have to move, Hallisey has said.
Ive told her, Mommy, Ill do everything to keep you in this house, but you have to use your walker and work at staying strong. A wheelchair wont work in your house, Hallisey said. I know that keeping her at home is a promise I may not be able to keep.
Matt Perrin made the decision to move his mother, Rosemary, to assisted living in 2017, after realizing he couldnt coordinate care for her escalating needs at a distance. (Rosemary lived on Cape Cod; Perrin lived in New Hampshire.) Because hed vowed to protect her independence, I felt so guilty a guilt that I had never felt before, he admitted.
Rosemary resisted the move passionately, but after a few months settled into her new home.
I felt relief then, and I still do, Perrin said. I wish I didnt make that promise to my mom, and I wish she werent living with Alzheimers. But Im thankful that shes in a place thats really good for her, all things considered.
Judith Graham: firstname.lastname@example.org,@judith_graham