Archive for the ‘Parkinson’s Disease’ 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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Open Dialogue: Overcoming The Need To Control

Posted on March 25th, 2015 by karen

Overcoming The Need To Control

by Michelle Krepak

“What if she forgets to turn the iron off or wakes up confused in the night or falls? What if she drives and gets into an accident and hurts herself or someone else?”

Like many of my clients, Laura was concerned about her mother’s advancing age and declining abilities. But more to the point, Laura came in for counseling regarding her own changing role with her mother. She complained that she was becoming her mother’s mother, and it felt uncomfortable for her.

Sharon, the mother, suffers from mild dementia due to Parkinson’s disease, and her bouts of memory loss and confusion have repeatedly raised concerns for Laura that her mother may not be safe living at home alone.

But Sharon is resistant to any move. She’s a nature lover who lives in rural New York, surrounded by horse farms and beautiful landscapes. She enjoys reflecting on the daily comings and goings of the birds and the deer on her property, and, of course, all her friends live in the area.

Sharon now clings to her home even more after a six-month stay in rehab and assisted living last year, during which she was treated for hallucinations and a general state of confusion that was apparently brought on by a urinary tract infection — common with Parkinson’s disease — and mixing up her medications. According to Laura, Sharon “absolutely hated” the assisted living facility because she couldn’t enjoy the outdoors and she was “surrounded by old people.”

But regardless of her mother’s discontent, Laura felt she needed to establish some “laws” of what her mother “could and couldn’t do” before leaving the assisted-living facility. Laura told me she knew full well that her mother resented her for making these demands, but she nonetheless insisted that Sharon take a neurological exam and a driving test before moving back home.

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Getting Your Affairs In Order

Posted on July 27th, 2014 by karen

Caregivers Get Organized

by Kim Keller

You can peek beneath or behind nearly any object in my mother’s home, and you’ll find a little piece of masking tape with someone’s name written neatly across it.

“This is from my great aunt, Mary Priest, who was a Methodist missionary,” Mom explained, cutting a piece of tape for a little carved coconut that’s been fashioned into a decorative container. I’ve always loved this item, so I made sure my name was on the masking tape. “Mary brought it back from Japan in 1881!”

My mom loves organization. Keeping things orderly gives her a sense of peace and comfort. She also enjoys knowing that, when it’s her time to go, she is passing along the things she loves in an orderly fashion.

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Parkinson’s: Walking The Line Between Courage And Support

Posted on January 15th, 2014 by karen

Walking The Line Between Courage And Support

For the next few weeks, we are featuring some of our favorite blogs from years past. This entry was first published by In Care of Dad on February 10, 2011.


by Amy Pavia

Denial is easy to come by with a Parkinson’s diagnosis. It’s not like the punch in the face that a stroke or a cancer diagnosis might deliver, where you’re forced to deal with it and make critical life and death decisions right away. It’s more like the threat of a slowly approaching storm on a clear, sunny day.

Symptoms of PD can sneak up on you and, at the beginning, can easily be blamed on something else like “my knees are getting bad with age” or “I keep tripping; I’m such a klutz!” As the disease process unfolds and symptoms worsen, often gradually, people may still be reluctant to admit something is wrong and seek treatment. It may be friends, family members, or other caregivers who are most able to see the affected person’s decline. Expressing concern is often difficult and can be a set-up for conflict and defensiveness.

Even after a diagnosis, it can be hard to accept what’s coming. People may go through a range of emotions, including fear, frustration and hopelessness. Many may even become clinically depressed. And since even experts can’t accurately predict how quickly each individual’s PD will progress, it can be a source of low-grade, chronic worry for patients and their families.

But what is most terrifying about PD, that it is a chronic condition that often progresses slowly, can also be something of a gift. Unlike acute illness or injury, PD offers an opportunity to plan and make adjustments now while your parent or loved one is able minded and bodied. Families often have time to do extensive research to find the right practitioner, thoroughly investigate treatment options and modify the affected person’s lifestyle and surroundings to improve quality of life moving forward.

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When Sibling Resentment Complicates Caregiving Duties

Posted on October 22nd, 2013 by karen


eileen and kate

by’s Carol O’Dell

“Caring for our parents is something I thought would unite us, not tear our family apart,” says Kathryn Hammond, a 55-year-old caregiver who lives in northeastern Florida.

The Hammond family’s struggle started out with the same challenges that so many other families face — caring for two aging parents, both of whom are facing serious medical issues.

“Mom has dementia,” Kathryn said. “We’ve brought in some home health aides, but, honestly, she’s getting to be handful. Dad is mentally sharp, but he had a stroke a few years ago that has left him with slurred speech. He’s in his 80s and also has some mild heart disease. He can’t take care of Mom like he used to.”

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Coming To A Screen Near You: Telemedicine

Posted on July 25th, 2013 by karen

Jetson's Telemedicine

by Karen Keller Capuciati

Just about every day, around 4pm, our mom makes sure her Skype account is turned on in case her friends call from England. This makes Kim and me smile — a couple years ago, Mom didn’t even want a computer, but now she’s videoconferencing like a pro.

It’s amazing how accessible videoconferencing has become, even among the older, supposedly computer-averse generation. It won’t be long now before videoconferencing is used for all sorts of purposes, including doctor visits. It’s called telemedicine, and it’s already in use in certain limited capacities. Imagine no more rushing to get the doctor’s office on time, no more waiting room with bad, out-of-date magazines, none of the stress that often comes with those sterile-smelling examination rooms filled with scary, invasive equipment.

In short, we’re talking about doctors being able to discuss, consult, diagnose and even treat patients while still in their pajamas. The patient, that is. This also means that patients can have medical monitoring of vital signs like heart rate, temperature and blood pressure done at home while the doctor reads the results in his or her office.

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Looking For A Nursing Home: The Essential Search Protocol

Posted on June 6th, 2013 by karen
Santo and his granddaughter Cece, June 2011

Santo and his granddaughter Cece, June 2011

by Karen Keller Capuciati

I often seek out my friend, Elaine, when someone I know is looking for a nursing home in our area. Elaine has done a lot of research on the topic, and I know she will have detailed answers for all the important questions that come up. Elaine also has a lot of handy tips to enhance a loved one’s nursing-home experience. For example, when I spoke with her on the phone this week, Elaine told me how she had made a special effort to get to know everyone — administrators, aides, nurses, etc. — at the nursing home where her father-in-law became a resident.

“I introduced myself and told them that Santo was my father-in-law. I made a point to ask them their first and last names, and then repeated each one back to them in order to get it right and to remember it well.”

“I find you get better care that way,” she explained. “Santo definitely got VIP attention, and that was because they saw how important he was to his family.”

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Learning To Thrive With Parkinson’s

Posted on May 21st, 2013 by karen

Alexander Tressor in his "Shaken, Not Stirred" trailer

by Karen Keller Capuciati

“Living with a chronic illness. Improve your attitude. Improve your health.”

This was the title of a lecture given by Alexander Tressor last Thursday in Stamford, CT. Alex was born in Russia and immigrated with his parents to New York City at the age of 17, where he undertook a career in dance, performing with the School of American Ballet, and later on Broadway.

Eight years ago, at the age of 46, Alex was diagnosed with Parkinson’s disease. His life changed forever. For the better, he says.

“I wouldn’t want to go back to the way I was before Parkinson’s,” Alex told me after the lecture. “I do so much more now. I enjoy those aches and pains — it means that I am still kicking.”

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Bright Ideas: Improving Safety And Accessibility

Posted on May 9th, 2013 by karen

Intense Burst of Light

by Karen Keller Capuciati

I came across a terrific idea the other day while scanning through Parkinson’s Disease: 300 Tips For Making Life Easier, by Shelley Peterman Schwarz: “Purchase touch-sensitive lamps if manipulating the small turn-screw on most lamps is difficult. Touch any metal on the lamp base and the light goes on; touch it a second time and the light goes off.”

A good tip, I thought. Not only can the switch itself be difficult to turn, but getting to it often requires bending down to reach under the lampshade, which could throw an unsteady person off balance and possibly cause a fall.

This is also a good idea for people with arthritis, vision impairment, cognitive disabilities or anyone assessed as a fall risk. Our dad, for example, had rheumatoid arthritis and this would have been a nice convenience for him.

But instead of buying new touch-sensitive lamps, I set out to  find out how easy it would be to adjust the lamps in our home in a similar fashion, and I discovered it couldn’t be simpler. Here are three small, low-cost options to make your own lamps easier to operate.


Touch Adaptor

This gadget allows you to turn on, off, brighten or dim a metal lamp by a simple touch. It’s inexpensive and easy to install. A couple of considerations: it only works with a metal lamp, and the addition of the 2-inch adaptor reduces the bulb space created by a traditional lampshade bracket. A lampshade that clips onto the bulb, or a bracket that sits at the base of the light bulb, as shown below, eliminates that issue.

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Our Favorite Tools: A Celebratory Retrospective

Posted on January 23rd, 2012 by kim

Green Tool Box Photo by Sue Schultz

by Kim Keller

Today In Care of Dad publishes its 101st blog!

It’s quite a milestone for us.  To celebrate this landmark occasion, we’re taking a look back at some of the most useful tools and resources we’ve written about here at In Care of Dad, items that have helped many people — just like you and me and my sister — to care for our aging parents.

Here are some of our favorite finds: — This wonderful service helps friends and families sharing a health crisis by offering space and access to any group, extended or otherwise, that wants to stay abreast of a loved one’s health status.  But more than that, Caringbridge helps families arrange their websites with the following format features:  1) journal entries to keep everyone up-to-date; 2) photo uploads to provide a visual component; and 3) a private message center where family and friends can deliver words of encouragement and support.  This service is easy to use and completely free!

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