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In this comprehensive and accessible guide, long-term care expert Stella Henry helps readers navigate the daunting logistics and powerful emotions of making care decisions for an elderly parent or loved one. Drawing from her 36 years as a registered nurse and a nursing home administrator, as well as her experience caring for both her parents (both of whom suffered the ravages of Alzheimer's disease), Henry tackles all the tough issues: spotting the warning signs of dementia, redefining sibling roles, doing a ...
In this comprehensive and accessible guide, long-term care expert Stella Henry helps readers navigate the daunting logistics and powerful emotions of making care decisions for an elderly parent or loved one. Drawing from her 36 years as a registered nurse and a nursing home administrator, as well as her experience caring for both her parents (both of whom suffered the ravages of Alzheimer's disease), Henry tackles all the tough issues: spotting the warning signs of dementia, redefining sibling roles, doing a walk-through at an assisted living facility or nursing home, making the move, and coping with "take me home!" demands.She also explains the medical, legal, and insurance maze. In a time when almost 10 million Americans currently need long-term care, The Eldercare Handbook is an essential read.
Victor and Grace had been married sixty-two years, a lifetime, and each viewed the other as a best friend. Sitting in my office with his son, Victor felt enormous guilt talking about handing over Grace's care to someone else. With one look, I could tell he was not taking care of himself; he needed a shave and a change of shirt. While his son Tim did most of the talking, Victor alternately closed his eyes and looked at his lap. As I questioned him directly about Grace, he silently wept. I asked him how Grace spent her day. What event had made him consider long-term care?
Two months earlier, Grace was diagnosed with cancer of the kidney, and she currently required dialysis three times a week. With each procedure, she became weaker and weaker until caring for her became a formidable task. Her husband could no longer bathe and dress her or monitor her diet.
"My son says it's not fair to his mother to leave her alone with me," Victor lamented. "I guess I just can't do it anymore."
"Victor," I gently responded, "making the responsible decision is not easy. If you allow us to become part of your caregiving team, it does notmean you will no longer care for Grace. On the contrary, it means you will begin to care for her in a different way. She will always need you to be her champion."
Where Are You Right Now?
If you are thinking about long-term care for someone, where are you in the process? Have you noticed changes in your parent, but your siblings disagree? Do you occasionally think about long-term care but feel your parent is "doing just fine" most of the time? Denial can leave you ill prepared for a future crisis. The idea of a quick, peaceful death is a common myth. After a fulfilling life, our parents should die peacefully in their sleep. But today, the elderly live longer than ever before, and death is more likely to follow a long, weakened state or disabling illness. If talking about this brings up uncomfortable feelings, you have a lot of company. Most families who come to see me simply did not expect this to happen. They do not know what questions to ask or what to look for in a facility, but their situation is often urgent. Hospitals frequently give only twenty-four hours' notice to find a care facility.
When placing a family member in long-term care, feelings emerge that can be confusing and overwhelming. Each family brings its own dynamic to the situation. Many are truly saddened, thinking they have let their parent down. Those with no options feel trapped and angry to find themselves sitting in my office. Others may not have had a good relationship with their parent but dutifully accept the responsibility to see that needs are met. Regardless of the circumstances, I salute anyone who steps up to the plate to care for an aging parent.
Here are some stories of families who have shared the journey with me. Each one illustrates a different response to the need for long-term care.
Jeanne, a well-dressed, take-charge executive, came to me reluctantly. Although her seventy-nine-year-old mother, Emily, was physically strong and lived alone, she suffered from dementia. When she attempted to cross a busy boulevard against the signal, a friend stepped in and said, "Like it or not, Jeanne, you have to get involved in your mother's care. She can't live alone anymore!"
For the majority of us, denial will be the first hurdle we deal with as we step in as caregivers. As adult children, we don't always look too closely at our parents' developing needs because it's easier not to confront them. Although Jeanne had always honored her mother's choice to live independently in the comfort of her own home, Emily clearly was no longer able to manage an independent life. By not looking at her mother's situation realistically, Jeanne was neglecting the responsibility of a caregiver.
As we talked, I knew Jeanne was trying to convince me that Emily did not need help and was hoping I would confirm her assessment. Instead I said, "Jeanne, you owe your friend a thank-you. She took a risk being the bearer of news you did not want to hear."
Two months later, her mother joined us in assisted living. To Jeanne's surprise, Emily slipped easily into the new routine of meals and activities. "Except for the last few years," Jeanne admitted, "Mom has always been very social. Since my focus was on keeping her at home, I guess I gave more attention to her house than I did to her. Now that I think about it, maybe she missed being with people." Jeanne understood that denial had held her back from an earlier intervention.
At eighty-three, Valerie needed long-term care, and her daughter Cindy was angry about it. Sitting in my office, Cindy looked tense and annoyed. Her mother had been a college dean but was now becoming forgetful, not bathing and eating regularly, and forgetting occasionally to take her medication. Cindy was convinced Valerie's lapses were intentional. "Mom had diarrhea last night," she asserted, "and I'm sure it was just a way to punish me."
Since Cindy had not had the best relationship with her mother, she was resentful of the enormous responsibility and inconvenience of taking care of her. In addition, she was angry with me and disliked being in my office as she reluctantly faced reality. And perhaps foremost, she was angry about the promise she had given Valerie years ago. "My mother made me promise never to put her in a nursing home," Cindy said.
Eventually Valerie did join us. As time went by, my staff and I became more of an advocate for Valerie than her daughter was. When Valerie's doctor ordered an antibiotic for a urinary tract infection, I notified Cindy. . . .
Excerpted from The Eldercare Handbook by Stella Henry Copyright ©2006 by Stella Henry. Excerpted by permission.
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Posted December 15, 2011
My sister, brother and I read this book simultaneously. It was very useful as we addressed certain circumstances of our Mothers diagnosis. The checklists were extremely helpful and we used them to organize her paperwork. I would highly recommend all involved family members read this for a superb backgrounder on the disease and their role in the process.
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