Archive for the ‘Manage Near or Far’ Category

Reframing Negative Emotions When Life Throws You A Curve

Posted on February 10th, 2016 by karen

Help When Life Throws You A Curve

by Alana Pietrantuono, LMSW

When a loved one falls seriously ill, family members are faced with an unexpected turn of events, one that likely alters the plans they had spent their entire lives constructing. Accepting these changes is a challenge for anyone — they can leave you feeling as though your life has come to a screeching halt.

Joyce, a 35-year-old nurse, was on the verge of purchasing her first home. She had worked hard for many years and finally saved enough money to realize the dream of owning her own place. But when the health of her father, Charles, a 74-year-old Parkinson’s sufferer, took a turn for the worse, Joyce was forced to put her plans of home ownership on hold.

You see, Joyce had been her dad’s primary caregiver ever since her stepmother, Janet, passed away two years before, and it became clear to her that some serious sacrifices would have to be made in order to help her dad. She felt she had two choices: she could either quit her job and move in with her father to take care of him full-time, or continue working and spend the money she had saved for her condo to pay for his around-the-clock care at home. Charles would not consider moving to a nursing home, as he insisted he was still grieving the loss of wife and didn’t want to leave the house where he and Janet had lived together.

Joyce, for her part, was utterly destroyed by the loss of her home-owning dream. And while she felt guilty about this overwhelming emotion, she still couldn’t deny feeling angry and cheated. “I never thought that this is what my life would become,” she said at our first meeting. “I can’t even cope! But I can’t imagine leaving my father either. I would be a terrible daughter.”

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Five Wishes: The Aging With Dignity Guide

Posted on January 15th, 2016 by kim

Rosey landscape

by Kim Keller

The decisions we made still haunt me. And I suppose they always will.

It’s not that I think we made the wrong choices. In fact, I’m certain we made the right ones. What I can’t shake is the belief that my father should have been leading the discussion about his own healthcare choices.

Instead, he wasn’t even a participant.

My dad had a living will. So my parents thought they were covered when it came to the recommendation, “Have a discussion with your family about end-of-life issues.”

But missing from that recommendation was the word “thorough” — as in, “have a thorough discussion about end-of-life issues.”

The living will only told us that Dad didn’t want to be kept alive by artificial means. What the document never anticipated were all of the other more likely scenarios that could develop. When some of those unforeseen events did ultimately play out, it was too late to secure his input and guidance.

Making these critical decisions for someone we loved so much, such as stopping aggressive medical treatments or starting hospice care, was a major impetus in the creation of In Care of Dad. My sister Karen and I wanted to spread the word: Have those end-of-life discussions before it’s too late, and make them meaningful!

Which often prompts people to ask us, “So how do I do that?”

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To Drive Or Not To Drive, That Is The Question

Posted on December 12th, 2015 by karen

by Joan Blumenfeld, MS, LPC

Driving with my dear old friend, Sarah, was becoming scary!

One evening, Sarah picked me up to go out for dinner. On the way, as we approached a red light, she was chatting with me and not paying attention to the road and we bumped right into the rear of the car in front of us. Thankfully no one was hurt, and neither car was damaged. The scariest part was that Sarah seemed to have no idea of the danger into which she had put herself, me and the occupants of the other car.

Her car was taking on an increasing number of small scrapes and dents. She was getting lost on her way home on familiar roads that she had been driving for years. The police were called four times in six weeks to locate her.

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Breaking The Alzheimer’s Code: One Hundred Hankies For Joe

Posted on November 6th, 2015 by karen

alzheimer's providing security

We are happy to re-post this very special blog from August of 2014.

 

by Karen Keller Capuciati

I’m at the Alzheimer’s Association’s Annual Education Conference, held a few months ago in Cromwell, Connecticut. Jolene Brackey, the keynote speaker, is what you might call an Alzheimer’s visionary. After graduating from Iowa State University, Jolene began working as an interior designer but soon came to realize that she was more interested working with the people at the Alzheimer’s special care unit across the street from her design firm. She enjoyed the interaction with older people and began formulating her own unique ideas for helping people with dementia live in the moment.

She walks out into the audience and chooses a gentleman entirely at random. She asks him for his wallet and keys.

As the man dutifully hands over the items, Jolene declares, “I’m just going to place them up there behind my podium for a few hours. Okay? So that you don’t lose them.”

The man seems a bit confused but willing to play along.

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Caregiver Salvation: A Delicate Balance

Posted on October 29th, 2015 by karen

Caregiver Stress

by James McGinn, LPC, NCC

“My mom had always been fiercely independent and self-sufficient all of her life,” said Deborah, who, like many of my clients, was struggling with the increasing dependence of her elderly parent. Deborah’s mom, Helen, had been a proofreader for Springfield’s Republican newspaper for decades. Although her retirement in 1986 was bittersweet, Helen was at least partially comforted by her lifelong passion for reading, which brought her to the local library several times each week. As Helen grew older and less mobile, her library sojourns became less frequent, but, fortunately, the librarian with whom she’d built a friendship would drop books off at Helen’s home on her way to or from work.

Sometime around the year 2000, when Helen was in her early 70s, she began to experience distortions in her vision that was eventually diagnosed as macular degeneration, a progressive worsening of the eyesight due to retinal damage that accompanies old age. Macular degeneration can be slowed with vitamins and supplements but has no medical or surgical cure — blindness is the unfortunate prognosis. It’s a disease that regularly impacts millions of people around the world, but it hit Helen particularly hard. Reading had always been her refuge: she’d been able to compensate for the deterioration of other abilities and functions by maintaining an active mind through her love of books, as well as by completing the crossword puzzles in the newspaper everyday. Now, however, with her sight degrading, Helen was at a loss as to how she would cope with her steadily increasing limitations and maintain what little independence she had left.

Deborah had been an active support for her mom for some time, assisting her with errands and transportation needs, but she decided it was time to take on more responsibility for Helen’s daily care. While the obvious solution in cases like this is for the child, or children, to step in as the primary caregiver, it’s a complex and stressful arrangement to say the least. In addition to handling a multitude of duties on behalf of an aging loved one, a caregiver must also contend with the reversal of the parent-child dynamic, as well as the parent’s emotional response to losing their independence and stature. In other words, aside from supervising Helen’s finances, medical treatment, and daily routine, Deborah also had to face Helen’s injured psyche, which the older woman often expressed as criticism and displeasure with her daughter’s decisions.

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Meal Train: The Best Thing Since Chicken Soup

Posted on October 15th, 2015 by karen

Chicken Tortilla soup from Rosie in New Canaan CT

by Karen Keller Capuciati

When you have a sick friend and you want to help out, sometimes you don’t know what to do. Offers to help — Don’t hesitate to call me! — seem perfunctory. You don’t want to be intrusive or force your sick friend to assign you a job, but you’d really like to show your love and concern . . .

Helping can get complicated.

Well, it just got less complicated. Meal Train is an interactive online service that allows family, friends and neighbors to sign up for delivering meals to friends and loved ones going through difficult times and/or significant life events, whether it’s surgery, cancer treatments, grieving a recent loss, arrival of a new baby, or just to ease the strain of everyday caregiving.

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The Card

Posted on October 1st, 2015 by kim

October is Breast Cancer Awareness Month, so we at In Care of Dad proudly rerun this invaluable blog by breast cancer survivor Christine Taylor detailing the love, support and inspiration she received during her treatment and in the many years since.

 

by Christine Taylor

The first anniversary of my cancer diagnosis has arrived, and I now find myself having thoughts like “One year ago today I got the phone call” and “One year ago today I met my surgeon.”

I vividly remember the panic and fear I experienced back then. A year ago, my world was spinning faster than it had ever spun before, and I stood frozen in the middle. Now, a whole year later, I’m feeling healthy and stronger than I ever have. The entire experience has taught me about perspective.

In the midst of the swirling chaos that my life became last year, I also received the biggest outpouring of love and support I have ever experienced. All of the cards and sentiments people passed along were beautiful and I cherish them all, but there is one that stands out and has served me well as a tool for getting through the toughest times.

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Books And Movies For Inspiration And Support

Posted on September 24th, 2015 by karen

Music Movies & Books for caregivers

by Karen Keller Capuciati

Getting engrossed in a book or a movie can offer a pleasant escape from our daily routine. But for those of us caring for another person, enjoying a book or movie seems like a luxury we just don’t have time for. It’s critically important, though, to find time for ourselves as well — and many times we can gain more than just a break from caregiving by listening to a story someone else wants to tell.

Sometimes a well-told story can bring us a smile, or a new perspective, or inspire us in a way we couldn’t have anticipated. And, honestly, even a good sitcom has the power to turn my mood around.

Over the past four years, In Care of Dad has published many helpful accounts and advisements from the health professionals at Family Centers in Fairfield County, CT, on combating caregiver and grief-related isolation. So we asked them to share some of the titles they might pass on as recommendations to their clients.

From that list:

the conversation

“The Conversation” by Angelo Volandes — This is an accessible guide to the stressful end-of-life communications with loved ones. It offers tremendously valuable advice to those of us taking care of aging parents and, ultimately, to us all. Death is never an easy topic to discuss on a personal level. In fact, many people avoid talking about it altogether, particularly when a loved one’s death is imminent. However, given that we cannot opt out of the event itself, being empowered to discuss death helps families when the unavoidable time comes. Volandes’s book is a truly valuable asset for having this important discussion.
— Amanda Geffner, MSW

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A Fear Of Sickness Or A Sickness Of Fear?

Posted on September 17th, 2015 by karen

Doctor Transparency

by Kim Keller

Dr. Leana Wen’s interest in bringing transparency to the medical profession began back in 2003, when she was still a medical student.

Leana’s mom, Sandy, had been diagnosed with stage IV breast cancer, which had already spread to her lungs, her bones and her brain. During her third round of chemo, Sandy happened to misplace her address book, so she went online to look up her oncologist’s phone number, and that’s when she discovered that her oncologist was also a highly paid speaker for the drug company that manufactured her prescribed chemo regimen.

Sandy called her daughter in a panic. It made her question her treatment plan. Is the chemo regimen right for me, she wondered? Or is it being prescribed because of my doctor’s financial relationship with this particular drug company?

Leana and her mother weren’t sure what to believe, but the answer was almost secondary. “When it comes to medicine,” Dr. Wen explained, “having that trust is a must, and when that trust is gone, then all that’s left is fear.”

Wen has enjoyed a long and varied career, serving in many capacities, both as a physician and public health official, including, most recently, as the Commissioner of Public Health in Baltimore, MD. And in all her various positions, Wen has discovered that many doctors share that same fear she described above. The absence of trust is by no means restricted to the patient population.

Indeed, there was an incident that left a great impression on Wen during her medical school years. She was caring for a 19-year old boy in a coma, whose body had undergone enormous trauma when he was hit by an SUV. The young man’s parents had immediately flown in from Seattle, traveling some 2,000 miles to be with their son in the hospital. The parents obviously wanted to receive as much information from the medical team as possible. In fact, they asked to be present when the medical team was doing rounds in order to help the parents understand exactly what was happening with their comatose son.

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Facility Living: Empowering Ideas For Better Care

Posted on August 20th, 2015 by karen

How to get better care in facility

by Karen Keller Capuciati

“Feeling of defeat: When you realize the place where you have moved your loved one gives less than desirable care and there is no place better to go to. I had to accept that this was as good as it gets.”

This comment was written by Martha in a recent post to In Care of Dad.  She had done her due diligence, checking all the memory-care facilities in a 50-mile radius surrounding her home, eventually locating the very best place for her father. But she is frustrated because the care her father is receiving doesn’t match up with her expectations for the facility.

Martha explained that all the personalized care details that she communicated at intake — her father’s food likes and dislikes, his special skin care needs, etc. — are not being communicated to the folks who are caring for him. Furthermore, the activities provided by the facility are not engaging.

So Martha’s question is, what can be done?

I asked some professionals in the field of geriatric care for ways to help a person in Martha’s situation. Here are some of their suggestions:

Joan Blumenfeld, a geriatric care manager:
I’d like to have some help with this myself. Even “good” places often fall short of our expectations and their promises. Sometimes our expectations do not jibe with reality and that’s frustrating. So we have to make some adjustments to our expectations.

Consider the following:

  • Pick your battles and set priorities. Not everything is worth a confrontation.
  • If there is an issue of health or safety, speak to nursing or administration, not to the aides. Facilities are hierarchical. Power to fix, change or adjust comes from the top.
  • Visit regularly and randomly, so you can see what is really going on.
  • If you can afford it, a part-time private duty aide might be of service, though it may create conflict between staff and the private aide.
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