Wednesday, June 29, 2016

Book Review

Contributed by Emily Anderson

The Emotional Survival Guide for Caregivers
by Barry J. Jacobs

This is one of the top books that I recommend for caregivers because it is truly unique. There are many books that address the diseases common in later life, give tips on helping a loved one, or suggest simple stress management exercises. Jacobs, though, drills to the core of the most difficult issue caregivers face: dealing with our own emotions.

The caregiving experience involves a wide range of emotions, from devotion and love to anger, grief, and loneliness. Jacobs skillfully addresses them all with an easy-to-read mix of stories and concrete advice. Importantly, he also looks at how caregiving affects family relationships, and how to understand and cooperate with the people with whom you want to share the care of your loved one.

If you are fighting with your family or feeling guilty, angry, or run down, this is the book for you. If simply managing your stress isn't enough anymore, Jacobs' insights can help you find a better, more compassionate understanding of yourself and the people around you. If that doesn't describe you...then still read it, it's a fantastic book!

Check out the website for The Emotional Survival Guide here for more information.

Wednesday, June 22, 2016

Six Summer Safety Steps for Seniors

by Emily Anderson

Happy summertime! Summer means ice cream, lemonade, swimming and cookouts are here, but it can also mean dehydration, sunburn, and heat stroke. Older adults in particular are sensitive to heat, leading to several deaths every year. Take note of these six steps to keep you and your loved one safe this summer:

1. Fill up on fluids

If you are thirsty, then you are already dehydrated. Older adults sometimes avoid drinking liquids because they don't want to run to the bathroom, but they are also less likely to notice when they do become dehydrated. Make beverages more appealing to your loved one with a spritz of lemon or juice, then toss back a tall drink of water for yourself. Quick tip: if you are drinking enough water, your pee will be pale yellow or almost clear. 

2. Chill out

Escape the heat by turning on the air conditioning or plenty of fans. If you don't have AC, visit a public space like a library or movie theater that does. Even hanging out in the basement or taking a cold shower can help keep away the heat.

3. Dress for the weather

Wear loose, cotton clothing in light colors, but don't stop there! Bring on the glamour with a pair of sunglasses to shield your eyes, a wide-brimmed hat to protect your head, and sunscreen to give your exposed skin that special summer sheen.

4. Be active early or late

Who wants to go exercise at noon on a blistering hot day? I don't know who enjoys that, but people still do it. If you want to be active on a hot day, choose to limit your activity to the early morning (before 10am) or towards evening (after 6pm).

5. Use the buddy system

People who live alone are at a higher risk of suffering heat-related illness. Check in on lone neighbors or on loved ones who live alone.

6. Know the signs

If bad comes to worse, know the signs of heat stroke so that you can get help quickly:
-dry, flushed skin
-feeling grouchy or confused
-heavy breathing
-rapid pulse
-nausea or vomiting
-odd lack of sweat
-temperature of 104°F or more

Heat stroke is life-threatening, so if you see those signs, help the person cool down right away with wet towels, a cold shower, or ice packs. 

Happy and safe summer fun to you all!

Wednesday, June 15, 2016

Get Smart--June

by Emily Anderson

School's out for summer, but there are still many opportunities to learn and grow! Check out some of these listed below:

Medicare Enrollment Process

June 16th, Noon-3:00pm
1 Smithfield St, Pittsburgh, PA
Knowing when and how to use the Medicare system can be complex and frustrating, and if you get it wrong, it turns into a giant mess. This presentation looks at the rules governing Medicare, it's various components, what they cover, and how they interact. Call Bill at 412-661-1670 Ext. 645 or email him at to register for this free session!

Mental Health First Aid

Area Agency on Aging
June 22nd & 23rd, 9:00am- 2:00pm
2100 Wharton St, Pittsburgh, PA
Many of the people we care for also suffer from mental illness, and in fact, one in four of us will be affected by a mental illness during our lifetime. Designed for family, friends, and coworkers of people with mental illness or addictions who want to be supportive but aren't sure how, the Mental Health First Aid class can fill in the gaps. It's a long day, but the steps to assist a friend or family member in crisis could one day be critical for someone you love. Contact Brenda Slagle at 412-350-4996 or email her at to reserve a spot!

Powerful Tools for Caregivers

Tuesdays starting June 28th, 10:00am-11:30am
Hope Grows, 183 Shafer Rd, Moon Twp
This six-week course focuses on helping caregivers develop tools to manage stress, practice good self-care, make difficult decisions, and communicate emotional needs. More than 80,000 caregivers have taken this class across the U.S., and most report that it helps them feel less anxious, more confident, and more in control. Call Hope Grows at (412) 369-HOPE (4673) or visit their website to register for this free class.

Caregiver Day at UPMC McKeesport

Wednesday, June 29th, 10:00am-2:00pm
Crawford Building, First Floor Suite 105, 1500 Fifth Avenue, McKeesport, PA 15132
Join us for some light refreshments while you discover community programs, services, and education opportunities to benefit you and your loved one! It's an open house, so just drop in!

Better Choices, Better Health

Sponsored by the United Way and presented by Familylinks affiliate Vintage, Inc., Better Choices, Better Health is based on the Chronic Disease Self-Management Program, developed at Stanford University. It’s a six-week program for people dealing with chronic health conditions like diabetes, arthritis, high blood pressure and others. People with different conditions all attend the same classes; the program is aimed at dealing with any chronic condition, rather than giving tips for dealing with one specific problem. Learn about dealing with day-to-day challenges and medications, in addition to the benefits of good nutrition and exercise.

This program is free and held in more than 15 locations around Allegheny County throughout the fall and winter. Find a site near you and sign up by visiting the website here or calling Vintage at 412-361-5003.

Building Better Caregivers

This online six-week course is offered through the Jewish Community Center in Pittsburgh, and it's a national program developed by Stanford University to help people who are looking after a loved one with a cognitive impairment or memory loss. You can work through the classes at your own pace in your own time. The online course is free and has rolling start dates throughout the year. Call Sharon Fienman at 412-697-3533 or email her at for more information and to sign up.

Tuesday, June 7, 2016

An Interview with Cameron Von St. James, Caregiver

by Emily Anderson

We talk about the importance of self-care and stress management on this blog, but as they used to say on Reading Rainbow, “You don’t have to take my word for it!” Today we’re joined by Cameron Von St. James, caregiver and human being, for a special interview on his experience. Cameron’s wife, Heather, was diagnosed with mesothelioma just three months after the birth of their daughter Lily. Cameron works as a network analyst, but in his spare time he blogs to champion mesothelioma awareness and share the insights he gained as a caregiver for his wife.

Thanks for sharing your story with us today, Cameron! Tell us a little about yourself! Where are you local, who are the important people in your life, what are you passionate about?
I grew up and still live in the Twin Cities (Minneapolis & St. Paul) Minnesota. Growing up my hero was my father…. and he still is. I always admired his hard work and dedication. He was always striving to provide a better life for his family and he helped make our house a home. My wife Heather and daughter Lily also play a huge role in my life.
But I consider many of my relationships important, friends, family, coworkers, and community members. I also value the friendships I have made in the mesothelioma community. It’s always nice talking to someone who can relate to what I experienced after Heather’s cancer diagnosis.
I’m passionate about technology, networking, woodworking, and blogging as a male caregiver. I also love to ski and teach children at a local resort in the winter and ride motorcycles in the summer.

You’ve helped care for a number of loved ones in your life. What were those different situations?
About 25 years ago I moved back home to help care for my father. He had Parkinson's and Alzheimer's disease. His health deteriorated until he had to move into an assisted care facility. I shared caregiving responsibilities with many of my siblings and was there to support my mother and father in their healthcare decisions. Currently my siblings and I are taking care of our elderly mother who has a few health issues, and I share those responsibilities with them again.
I also cared for my wife and daughter after my wife’s mesothelioma diagnosis. This time I was the primary caregiver and was making healthcare decisions. I was fortunate to have a huge support network help me through this tough time.

In a nutshell, what is mesothelioma? Is it a serious diagnosis?
Mesothelioma is a very rare and aggressive cancer caused by exposure to asbestos fibers. Around 2-3,000 people are diagnosed with it each year in the U.S. Most patients diagnosed with mesothelioma only survive around a year to 21 months after a diagnosis. There is a long latency period, and sometimes it takes up to 50 years to cause symptoms like coughing, fatigue, difficulty breathing, fever, unexplained weight loss and anemia. Mesothelioma develops in the lining of the organs. Heather had the most common type of mesothelioma is pleural. It develops in the lining of the lungs specifically. Other types can affect other abdomen organs and the lining of the heart.
Anyone could be exposed to asbestos. It was used up until the 1980’s in many applications such as building and construction materials, some consumer goods like crockpots and hair dryers, and in many naval applications. There are many different ways that people can be exposed to asbestos, some of those diagnosed with mesothelioma were exposed on the job in construction or demolition careers, while serving in the Navy, or like Heather, in secondary exposure, from asbestos that came home with her father.

You were also raising your infant daughter, Lily, at the time and working. How did you juggle all those responsibilities?
With great difficulty at first. I learned to prioritize my tasks, manage my time and use the resources around me to help lighten the burden. And I never forget to take care of myself. I also learned to be flexible. When you are living between doctor’s appointments, being flexible helps. I also called upon a great support network. I was very fortunate.

What was your self-care routine like while you were helping your wife?
I didn’t have any routines at first. Things were changing so fast; life was very dynamic. In the beginning, I would just take time out for myself whenever I needed a break— a quick movie, or lunch with friends. Once life settled into more of a routine I was able to schedule time weekly to catch up with friends or socialize, just anything to get away and forget about being a caregiver.
I never found it that hard to schedule time off from caregiving to take care of myself and I believe I’m a bit unusual in that respect. Most other caregivers I have met find it very difficult to take time off and get away. Many even feel guilty if they take time for themselves. I don’t believe you can be an effective caregiver if you are not taking care of yourself. I always tried to eat well, get enough sleep and not neglect my social life too much.

Who were the people you called on for help? Was it difficult for you to ask for or accept help at first?
I had a huge support network and called upon many people to help, and yes, it was difficult at first to ask for help. I remember a guy walking up to me at a benefit we had in my wife’s home town. He didn’t know my wife or her family. He was just passing through town, saw a flyer for the benefit and stopped by. Years ago his wife was diagnosed with cancer and he knew what it was like to be a caregiver. He introduced himself and we chatted. I’ll never forget when he told me, “If anyone ever offer you help, take them up on it. It’s one less thing you have to worry about, and it reminds you there are people who love and care about you.”
It might have been a pride issue at first, but hearing the advice from another caregiver changed how I felt about asking for help.

Many caregivers tell us that they are glad to help their loved one, but that it’s still stressful and brings up a lot of negative emotion. What ways did you find to deal with emotions like guilt, worry, or frustration?
I found myself dealing with anger after Heather’s diagnosis. We had spent the last five plus years planning the start of our family, trying to get ready to be parents. And while I was as ready as I could be for fatherhood, I was not ready for Heather’s mesothelioma diagnosis 3 months after our daughter was born. I was stuck on anger. Not at Heather, at life in general. It took me a while to get over it. I had a moment where I realized the worst case scenario was something I could get through. I realized I had family and friends who could help me no matter what happened. And what I didn’t know, I’d figure out in time. I realized what I did and what I didn’t have control over. I was never angry at Heather, just at cancer.

Now you help support other families that are experiencing a mesothelioma diagnosis—people call you to ask questions or help sort out their confusion. What do you tell people who are just starting down that long road of caregiving?
First I listen. I don’t believe I have all the answers, but I do have two ears and I try to relate. I also realize what worked or helped me may not work for others. I remind caregivers to take care of themselves, to eat as healthy as possible and get plenty of rest. I remind them it’s okay to ask for help from others. I tell them it okay to want to take time off for themselves. That it’s important to still have a social life and to maintain a strong support network.

You’ve become a tremendous advocate for mesothelioma awareness. What kinds of resources would you like to see caregivers have access to in the future, regardless of diagnosis?
There are many resources available for caregivers, online support groups, social media, and websites dedicated to caregiving. Many healthcare facilities now have caregiving support groups. Some diseases have huge social movements, raising money and awareness and can be a great resource. The Internet has become a very powerful resource for caregivers, but what I would like to see is more employers who willing to work with caregivers and allow creative work schedules.
After my wife was diagnosed my employer was fantastic, allowing me to take time off whenever I needed, my wife’s had the opposite experience.  Many caregivers struggle with work schedules and the demand of caregiving. Having an employer who allows creative scheduling can make a huge difference!
Please feel free to read more about Cameron story on Heather’s blog series at Beating the Odds: My Decade of Survivorship

Thanks for sharing your story with us, Cameron! Want to share your story? Contact us!

Wednesday, June 1, 2016

Top 3 Ways to Take Care of Yourself as a Caregiver

by Emily Anderson

With the Caregivers First Initiative, we work with caregivers of older adults and see many of you who are overwhelmed, burned out, and tired, but not ready to give up yet! Often you are so busy caring for others that you forget to care for yourselves. Caregivers face a higher risk of depression, chronic disease, and even death compared to your non-caregiver peers. Don’t want those things happening to you? Here are three tips to start taking care of yourself:

1. Recognize that you deserve it 
It is not selfish to take care of your health and well-being. You are a human, and deserve all the good things you try to give your loved ones, so treat yourself with the same care and love you give to other people. Recognize that taking care of yourself isn’t just a luxury—it is necessary to keep you going and your right as a person.
2. Go back to basics 
Get good sleep, exercise, eat healthy food, get regular checkups…you’re not surprised that these are on the list. We all know that we are supposed to do these things, so pick one and set aside some time to start working on it. Taking care of the basics gives you a stronger foundation for getting through the tough moments in everyday life. 
3. Treat yourself 
Whether you pick up an old hobby, call a friend, or just savor a quiet cup of coffee in the morning, do something that gives you a moment of happiness. Adding sources of joy and connection back into your life helps you reenergize and gives you something to look forward to in each day.

Remember, you can’t help your loved one if you are falling apart too. The truth is, we rely on family caregivers to do 90% of the work of caring for older adults, and we simply can’t afford to lose you! Sometimes, though, taking care of yourself can feel like one more task in your already-busy schedule. If you’re having trouble fitting these three tips into your life, consider calling in reinforcements, like a care coach from the Caregivers First Initiative, to help you find ways to take care of yourself.

For once, put yourself at the top of your “to-do” list!