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How To Avoid A Caregiver Breakdown

Posted on January 28th, 2015 by karen

by Erin Tishman

You’ve heard the term “mind over matter”? Caregivers likely take this phrase to heart more than the majority of the population. Despite the constant pressure of managing their loved one’s physical and medical needs, many caregivers simultaneously balance jobs, family and other personal matters. So they hunker down, get in a good mindset and just do what needs to be done.

Truth be told, caregivers are a very strong and resilient bunch. At the same time, however, they are human and are susceptible to breaking down emotionally. No matter how many responsibilities a caregiver can juggle all at once, there’s a good chance they’ll all come crashing down if precautions aren’t taken.

Take Ellen, for example. She’s one of my clients. For years, she thrived as a typical working mother. She held a high-profile job as a marketing executive in a prestigious New York firm. Despite long hours at work and a tedious commute, Ellen made sure she was an attentive and active parent. She volunteered at her kids’ school, never missed a sporting event and was always home in time to cook dinner and help with homework. Ellen had found a work/life balance that most people only dream of.

Last year, Ellen’s seemingly perfect schedule was turned upside down when her elderly father was diagnosed with a terminal form of cancer. He was able to manage the disease for a few months, but soon needed constant medical care. Ellen moved her father into her home and assumed the role of primary caregiver. At first, Ellen kept her regular schedule intact. But when her father’s needs grew more intensive, Ellen’s carefully balanced routine started to crumble: she was forced to miss more and more meetings at work; shuttling her kids to extracurricular activities became a challenge; and just the thought of cooking dinner exhausted her.

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Socializing Alzheimer’s: The Connection Cafe

Posted on January 21st, 2015 by karen

by Karen Keller Capuciati

Charlotte and Cati were the least likely of friends. Charlotte, a therapist for a rape crisis center, is straightforward and serious by nature. Cati, a former athlete who has worked as a prominent international tennis judge, is extremely upbeat and quick to laugh.

They met at a café five and a half years ago and, despite their disparate personalities, they quickly became close friends and great support for one another. They would get together a couple times a week for coffee or to walk their dogs. They got to know each so well that they would sometimes finish each other’s sentences.

There was this one thing they had in common — both had been diagnosed with Alzheimer’s disease.

They might never have met if it weren’t for the Alzheimer’s Café they started visiting along with their caregiving husbands.

What is an Alzheimer’s Café?

The Alzheimer’s Café is a regular get-together organized in many towns for those with dementia and their caregivers, as an opportunity for all of them to get out of the house and into a social setting. It is an opportunity to relax and socialize in an environment that is both supportive and non-judgmental. They take place at public venues that have donated their space during their closed hours. For example, it might be at a luncheonette from 4 to 6 pm on the first Monday of each month or at a children’s museum cafeteria from 5 to 7pm (when it’s closed to the public) one Wednesday a month.

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Postcards From Florida

Posted on January 8th, 2015 by karen

December 29, 2014
Here’s the latest: Mom’s been in rehab for the past five weeks, recovering from hip surgery. Just before Thanksgiving, she was having dinner with her girlfriends, and she fell when leaving the restaurant and fractured her left hip. This certainly hasn’t been the holiday season we imagined! But the good news is, she’s doing well and I’m bringing her home in the morning. She’s pretty excited!

December 30, 2014
Phew! Mom’s friend Debbie cleaned out the refrigerator at home, and then went grocery shopping to refill it with essentials. I’m so grateful because it’s been just crazy busy moving Mom home!

December 31, 2014
Well, transitioning Mom back home from rehab has been a lot harder than we anticipated. We expected it to be “all good” when she finally made it home, but it’s not. No call button. No aides. Her daily routine is off. Everything feels different than in rehab: Mom says that the furniture at home feels too low, while her bed feels too high. It’s like Alice In Wonderland, when she drank the potion that made her so teeny that she could fit through the miniature door — and then she grew too big to fit in the room.

Note to self: When the dust settles, let’s find a better chair for Mom to get in and out of.

Morning, January 1, 2015
Mom’s been weaning herself off the pain medication way too fast! It’s causing lots of distress. We should’ve asked for more guidance to manage this one. Oy!

Evening, January 1, 2015
Mom’s overwhelmed by all the things that need to be done — bills, laundry, necessary correspondence, that kind of stuff — and her anxiety is exacerbated by the withdrawal from the pain meds. Plus, there’s a whole new group of people for her to become familiar with: the visiting nurse, the nurse’s aide, the physical therapists. This is not easy for Mom under the best of circumstances, and right now it’s even more complicated.

She’s still not fully recovered from the surgery, and needs to use a walker to get around (not sure how much longer). Her limited mobility is frustrating her, and her lack of control makes her feel even more anxious. We need to establish a routine to help her address all those tasks that are floating out there, unnerving her. A little structure goes a long way in making life feel more manageable.

During dinner tonight I’ll try to help her create a schedule and a master to-do list. We’ll take a few simple items from the list each day and put them on the schedule, things that Mom can realistically accomplish. That way, things get done and she starts to feel a little more confident and in control each day. We need to do this every night and stick to it.

Morning, January 2, 2015
I’m feeling the stress. I need to create my own schedule with a little “me” time each day. Before Mom wakes up in the morning, I’ll meditate from 8 to 8:30, and then, after she goes to bed, I’ll have time to read from 9:30-10. Then it’s lights out!

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A Year-End Commitment To Healthy Caregiving

Posted on December 31st, 2014 by karen

by Ed Moran, LCSW

Well, it’s that time of year again. Out with the old and in with the new. Each January 1st we vow to make drastic changes in the way we live our lives. We promise to eat healthier, lose weight, get more exercise, or quit smoking. We vow to spend more time with those we love, and less time with those who bring us down. We pledge each year to be nicer, to work harder, and to stop losing our temper in traffic.

We make these promises with the best of intentions, though I’m sure we can agree that most often our expectations are unrealistic. After all, trying to keep these resolutions will require significant time, effort and emotional energy, none of which the average caregiver can spare.

Caring for a sick loved one can easily take over your life. Whether you’re by their side at all times or not, it’s an enormous commitment that monopolizes your thoughts and emotions. Indeed, it starts to feel like we exist for the sole purpose of meeting their needs. Many take on this role without a second thought. Others feel pressured to take it on and maybe don’t even realize what kind of responsibility they’ve undertaken. Either way, full-time caregivers have very little brain space left over with which to engage New Year’s resolutions. That’s not to say the need isn’t there, that there aren’t things we can do to help handle emotional pressure and lead healthier lives.

For example:

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In Care of Dad: A Look Back At 2014

Posted on December 24th, 2014 by kim

by Kim Keller

I remember when I was a kid, rolling my eyes at my parents when they’d talk in wonder about how fast time goes by. Of course, that was a long, long time ago, and here I am now thinking, where did 2014 go? I don’t roll my eyes any longer. Now I just smile knowingly.

And at the end of December, my parents would sit around and reflect on all that had happened that year. I thought it was kind of silly then, living in the past and all, but I see the wisdom in that now, too. You should always bring along the lessons and whatever good life has to offer.

In that spirit, here’s a look back at In Care of Dad in 2014:

“I will never leave you — no matter what happens I will always be with you.”

Unbeknownst to both of us at the time, those would be the last words my father would ever say to me. That one sentence would carry me into my fatherless future, like a road map to guide me on the sometimes perilous, sometimes heartbreaking, always blessed journey of my life.

— Ann Meyers Piccirillo, Always Your Daughter, January 22, 2014.

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Lessons From The Hip

Posted on December 17th, 2014 by karen

Mom celebrating her birthday at rehab.

by Kim Keller

I recently received one of those late night phone calls that you just know is full of bad news on the other end.

It was my sister, Karen. Our mom had been out with her girlfriends that evening, and she fell in the restaurant as they were leaving. Her friends rushed her to the emergency room where Mom was told she had fractured her hip and now required surgery.

Never the news you want to hear, especially right before the holidays. And, no matter how many times Karen and I have needed to help one of our parents through a health ordeal, and despite the years we’ve spent on In Care of Dad, detailing helpful caregiving protocols, we still feel the initial panic that overwhelms every son and daughter when their parents are suddenly injured or become seriously ill.

Luckily for us, our training kicked in fairly quickly, and we were able to apply the same basic principles we’ve been preaching these last four years. And that gives us considerable satisfaction on two levels: firstly, because we know our mom is now in good hands and on her way to recovery, and, secondly, because it tells us once again that the procedures and tips and guidelines we’ve been recommending here are indeed helpful and instructive.

But there’s always something new to learn and to share, and this time was no different. Here are some of the highlights:

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Ten Of My Favorite Time Management Tips

Posted on November 26th, 2014 by kim

by Kim Keller

It’s easy for me to become overwhelmed in general, and the holidays just escalate all those stressed-out feelings. Seems like everyone I talk to is feeling the exact same way: so many things on the calendar, so many tasks on the to-do list, so many seasonal expectations.

Balancing work with caregiving responsibilities, as well as handling the unexpected life challenges that invariably crop up, can get the best of anyone. And if I’m not disciplined with my time, I not only risk making myself (and everyone around me) crazy, I’m also likely to become unproductive. So I use certain little techniques to help me stay focused and effective.

Here are my ten go-to tips for staying organized:

Create A Daily To-Do List — I keep a huge to-do list that incorporates everything I need to take care of in every aspect of my life. Nothing is too big or too small to escape the list. Then, on a daily basis, I review the big list in order to create a smaller listing of all the tasks I need to get done on that particular day. I then prioritize those duties, using a simple numbering system.
Schedule It On My Calendar — The day can get away from me if I don’t actually schedule time for the pressing tasks. So I block off a chunk of time in my daily calendar to address them. You can’t just hope you’ll have time to handle these things — you must treat them with the seriousness they deserve. By scheduling time to handle the most urgent tasks, I also manage to put all the distractions aside. No phone, no email, no texting. I treat the time like I’m having an important meeting. You wouldn’t answer a text during an important meeting, would you? This way, it’s just me and the project at hand.

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Life With Pop: On Growing Old

Posted on November 5th, 2014 by karen

An excerpt from the book, Life With Pop: Lessons On Caring For An Aging Parent, by Janis Abrahms Spring, Ph.D., with Michael Spring.

October 16, 2005

We grow up when we lose our parents. In facing their mortality, we face our own. Suddenly, we’re orphans with no one to shield us from the finiteness of our lives. There’s no hiding from it – our turn is next.

When I think of my inexorable decline, first losing a life partner, then losing life itself, I cringe. Fortunately, having cared for Dad, I feel more prepared for what lies ahead, as though I’ve taken a course in being a good Old Person. Thanks to him, I have a better sense of what it takes to morph gracefully into elderdom.

What exactly have I learned? Here’s a list of reminders that may help me survive old age and be the kind of model octogenarian my friends and family will want to have around. I plan to file it away in a drawer. If I’m lucky, I’ll live long enough to need it, and remember where it is.

Be sure to show appreciation when your kids extend themselves to you. They have so much competing for their time. Don’t take those Eskimo Pies in the freezer for granted; they didn’t just magically appear.
Make your health-care wishes known to your kids with the utmost specificity. Don’t saddle them with this responsibility, or you may find yourself dining on kosher fluid piped into your belly, against your will. Your input will free them from having to make these onerous and morbid decisions on their own.
Don’t be ashamed to use a cane or walker. It’s dumb to let vanity trip you up. It’s selfish, too, because your children will need to manage your recovery.
Don’t criticize yourself for wanting to steal bananas from the dining room, or for worrying about the cost of fruit salad. It’s an age-appropriate preoccupation.

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Emergency Concierge Tool: The GreatCall Splash

Posted on September 24th, 2014 by karen

by Kim Keller

Karen and I just discovered a terrific emergency safety tool this last weekend while visiting our mom in The Villages, Florida. A couple of our mom’s gal pals, who are all part of a rather large and close-knit group of women friends sharing the challenges of widowhood and living alone, told us about the GreatCall Splash emergency alert button that a few of them are now happily wearing around their necks.

Naturally, Karen and I think it’s a smart idea for anyone living alone to have an emergency-alert button, but we were nonetheless a bit surprised to find that Mom’s friends, who are all active and full of life, had decided to take the leap of buying their very own alert buttons, which, for many people, carry the stigma of old age.

So we asked one friend, Carol, “What made you do it?”

“I always thought having an alert button was a good idea for someone living alone,” Carol explained, “but I didn’t want to think that it was time for me to have one just yet. And then Joyce [one of the other girlfriends] fell in the foyer of her house, and she laid there for a few hours with a broken femur before someone found her, and I thought, well, that could happen to me too, since I live alone. So, I decided it was just a good idea, and now that I have it, I feel safer. It gives me tremendous peace of mind.”

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Lewy Body Disease: Walking The Dementia Tightrope

Posted on September 17th, 2014 by karen

by Paul Raia, PhD

Life itself is a question of balance. The equilibrium of our solar system, the ebb and flow of the tides, the fragile relationships between ecosystems, the intricacies of maintaining physiological and emotional wellness, all a question of balance.

Lewy Body Disease causes many systems in our body to spiral out of balance. Abnormal proteins called Lewy bodies are thought to be involved in, if not the cause of, two separate but related diseases — Parkinson’s disease and Dementia with Lewy bodies (DLB). Both conditions have these abnormal protein deposits named for the physician, Fredrick H. Lewy, MD, who first saw them under the microscope in the early 1900s in the parts of the brain that control thinking, memory and movement.

The presence of these Lewy bodies can cause degenerative Parkinson’s disease with no, or only slight, cognitive problems; a progressive and terminal dementia; or a combination of the two: full-blown dementia with significant degenerative motor problems.

Typically, the early symptoms of DLB include:

visual hallucinations;
problems with attention and carrying out multiple stepped tasks;
spontaneous symptoms of Parkinson’s disease that come and go;
significant sleep disorder;
frequent falls;
unpredictable loss of consciousness;
dramatic sensitivity to drugs, especially antipsychotic drugs that might control hallucinations;
problems with visual-spatial tracking of objects, depth perception and other visual deficits.

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