by: Kirsten Diegel
- Take a Lap – Walk around the whole cafeteria to see the selection. Cafeterias may change the menu daily, and sometimes they have seasonal specials. As you walk around, take note of which options fit your nutrition goals. For instance, are you trying to lose, gain, or maintain your weight? What did your dietitian recommend?
- Food for Thought – Although the staff works hard to prepare foods that are safe to eat, transplant patients need to be especially careful. This is one reason why dietitians spend time educating transplant patients before discharge. Examples of foods to avoid include deli meats and cheeses, salad bars, raw nuts and sprouts, etc. Refer to FDA’s list about food safety as a refresher. If needed, contact your dietitian for an additional copy of Food Safety for Transplant Patients.
- Balance Your Plate – Imagine your plate is divided into 4 sections; fruit, vegetable, protein, and whole grains. Aim to have a plate that has food in each section. Of course, this can be a challenge. At a minimum, try to pair a protein (chicken, turkey, fish, beef, peanut butter, milk, etc.) with at least one other food group (fruit, vegetable, or grain). Having a serving of protein will help keep you feeling full!
- Sip on This – Beverages can boost your calorie intake and weight, which may be a benefit for some but not so great for others. If you are trying to gain weight, high calorie beverages/fluids, such as whole milk, chocolate milk, fruit/vegetable combination juices, protein shakes are options to consider. On the other hand, if your goal is to lose or maintain your weight, water, unsweetened beverages, and low-fat or skim milk is your best bet. Remember: Canned beverages (ex. soda) are not recommended for transplant patients for food safety purposes.
- Keen on Clean – Before eating or drinking anything that you have purchased, take a second to use hand sanitizer to clean your hands, wipe your utensils with a napkin, and wash your fruit. That apple may have been washed in the kitchen, but who knows how many people picked it up before you selected it. During your meal, place your utensil on a napkin or on your plate rather than setting it directly on the table between bites.
About Kristen:
Kirsten Diegel graduated from University of Delaware and completed her Dietetic Internship through ARAMARK in Philadelphia. She is currently pursuing her Master of Science in Health Promotion at the University of Delaware while working as a Clinical Dietitian at Temple University Hospital. Kirsten has worked within the hospital system for 4 years and has been a part of the Lung Transplant Program, one of the oldest and most experienced centers in the region, for the last 3 years. Kirsten is an active runner who is working towards running the New York Marathon in 2017. Kirsten enjoys eating soy yogurt with fruit and almonds/walnuts as a snack to help fuel her workouts, although she will never say no to anything with chocolate.
In today’s age of technology, a simple Facebook search can reunite long-lost friends, but it can also lead to the greatest gift of life—an organ transplant. Spending their summers growing up together in South Amboy, NJ, Gail Boscian and Mary Casey-Griffin grew incredibly close. However, after their families moved away from one another, they lost touch for about 30 years until they were reunited through social media.
“I have plans to live. We had many good times and they are not over yet—they are just beginning. This is the next chapter of our lives.” – Mary Casey-Griffin
Mary, born with polycystic kidneys, was officially diagnosed with Kidney Cancer around age 45. At that point her health rapidly declined. Having worked as an art teacher for 25 years, she tried to continue her work in administration but her health impeded her career. On peritoneal dialysis for 10 hours a day, “I was tethered to my bed –it was really getting me depressed.” In 2015, she was diagnosed with kidney cancer and needed a nephrectomy—removing both of her kidneys this past September. Her husband, son and daughter-in-law all wanted to be her living donor but were unfortunately unable to.
Meanwhile in Ohio, Gail had recently moved back to be with her family and future husband. Having just received foot surgery in March of 2015, Gail was confined to the couch for eight weeks during recovery. After playing around on social media out of sheer boredom, she remembered her long lost friend, Mary, and decided to do a search for her. After plugging her name in on Facebook, there she was! They connected and quickly became friends again.
Gail explains, “We started talking on the phone and I found out about her kidney and I said, ‘Oh, no, no, no, no—you can’t live like that!’” So without hesitation, Gail offered to be tested to see if she was a match to be Mary’s living kidney donor.
Just five months later, in August, she discovered she was an exact match for Mary. Out to lunch with two friends on a random afternoon, Mary received a call from Gail: “I just heard from our transplant center and it’s a go!”
Mary recalls, “I couldn’t even talk… I was crying and I couldn’t believe she would do something so selfless.”
Gail has struggled with the attention this selfless donation has ignited. She explains, “I don’t like people saying how wonderful I am for wanting to help my friend. I guess it’s amazing to me that more people don’t donate. I love her, she’s become like a sister to me.”
After endless phone conversations, these two women finally had the opportunity to reconnect in person before the scheduled surgery as guests of Gift of Life Howie’s House.
Upon arrival they were both immediately impressed with the Howie’s House and all the services provided to transplant families. Gail’s impression of the facility was simple: “I Love it,” she says, “there is just so much to do here!” Mary calls the Howie’s House “a godsend; I cannot imagine how important the Howie’s House is to the people that stay here. The Library alone is just amazing – it’s worth every stay here!”
Sitting around a table in the Howie’s House dining room eating Jell-O and beef broth, they were anxious to try all the delicious food prepared by the Home Cook Hero volunteers. Not being able to eat before surgery, they were dreaming of hoarding the cake from the night’s volunteers to save for a post-transplant treat.
We are happy to say that Mary and Gail’s surgeries went very well and both are recovering here at the Howie’s House. And now, looking to the future, the opportunities are endless. Mary says “I see myself living. I want to go to Ireland, New Orleans, Las Vegas, Ohio—to visit Gail—to take a few art classes. I have plans to live. We had many good times and they are not over yet—they are just beginning. This is the next chapter of our lives—we took a brief hiatus and now we are back!”
At the Howie’s House love is manifested in many ways – consider joining our mission to support and show love for transplant patients and their families. Learn how to get involved or show your support through a financial gift visit, www.GiftofLifeFamilyHouse.org.
“The Home Cook Heroes program gives us the opportunity to connect directly with the people we help serve – in real time. Every time we’ve been there, the guests – and staff – have been so grateful for what we do.” – Greg Dommel, Voya Financial
As the clock approaches 6 o’clock, inviting aromas of roasted pork tenderloin, breaded tilapia and berry cobbler beckon guests into the dining room. Even after three main courses, lots of sides and plenty of desserts, there are rarely any leftovers from this particular group’s Home Cook Hero meal!
Since its inception, the Voya Financial team has been nothing but committed. Greg Dommel, their team leader, created the Home Cook Heroes program through his company. Like many employers, Voya Financial strongly encourages staff to get involved in the community, offering incentives to encourage them to take advantage of volunteer opportunities, including 40 hours of paid time each year to volunteer.
The Voya Community Partners initiative presents several opportunities to get involved throughout the year. All opportunities are selected by employee nominations in an effort to interact with organizations and causes important to its employees. Because Gift of Life Howie’s House was near and dear to Greg’s heart, he has been ensuring his company’s involvement in our programs since 2011, when the Howie’s House first opened.
Greg has a close personal connection transplantation, as one of his own family members needed a heart transplant in the early 2000s. He mentioned commuting back and forth from Lancaster to the Philadelphia area for transplant care was a strain on his family. He understands the important need of the Howie’s House and is thankful that families traveling g to Philadelphia for transplant care nowadays have a warm and inviting place to stay.
When the opportunity arose, there was no question in Greg’s mind about where he wanted to direct his time in volunteering. He quickly formed the Voya Financials Home Cook Hero team and was excited to hit the kitchen.
The team’s natural talent to “rebrand” has not gone unnoticed by Howie’s House guests and staff! Greg recalls one day the team was scheduled to volunteer at the Howie’s House, “Mark and I finished off our grocery shopping with a diverse range of desserts including a Mixed Berry Pie with Lattice Top. During the car ride from West Chester to the Howie’s House, contents shifted. When we unpacked our groceries, the pie was still sealed and fresh – but was no longer anything close to being pie-shaped.” Being fast on his feet and thinking with marketing savvy, Mark took the object formerly known as a pie and placed it in a slow cooker. “Just like that, our pie was rebranded as ‘Mixed Berry Cobbler.’ Interestingly, our ‘cobbler’ was one of the most popular items that night!”
Volunteering at the Howie’s House means a lot to the entire Voya Financials team, even beyond having a personal connection to transplant. “It gives us the opportunity to connect directly with the people we help serve – in real time. Every time we’ve been there, the guests – and staff – have been so grateful for what we do.”
For other corporate companies looking to start a team, figuring out where to start can be a challenge. Greg sheds some light on the issue: “I quickly learned to surround myself with people who enjoy cooking. Initially, most of our Home Cook Heroes team came from my Marketing group, but soon expanded to other departments. We have a revolving door of frequent volunteer cooks, but our lead chef, Mark Siciliano, helps coordinate the planning and execution of our meals.”
The Home Cook Heroes program offers a unique and engaging opportunity to get involved in both the local and the transplant community. It provides a chance to engage directly with the people you are helping. Working with your coworkers, family, friends or classmates, groups of up to 10 people can prepare meals (on or off site) and serve them to our guests. Just bring yourself and your food and we will provide everything else in our modern, fully-equipped kitchen. For more information about the Home Cook Heroes program or to sign up, please click here.
By Julia Stiffman, Gift of Life Howie’s House Social Work Intern
The holiday season and New Year can be a stressful time for anyone. As a caregiver, you may experience stress year round, but with the holiday season comes added worry. Additionally, caregivers often neglect to think about themselves because they are so focused on their loved one’s health. Between holiday traveling and visiting family, increased spending plus ongoing medical issues and expenses, it is easy to feel pretty helpless as your resources get spread thin. It is crucial for caregivers to prioritize self-care so they can stay as healthy as possible while caring for their loved one. New Year’s resolutions are a great way to start thinking about what’s missing from your life and what you can do to change that.
Listed here are 5 common resolutions that could be especially beneficial to someone in a caregiving position.
1. Learn to say “no”.
Especially during the holiday season when your capacity to handle many responsibilities may be stretched thin. You may be naturally prone to want to help others whenever possible, but everyone needs a break at some point. If you are asked to host a holiday party or to take on a big project, try not to feel guilty for saying no. This can be applied year round. Your friends and family will understand that you have a lot on your plate. With one less thing to stress about, you’ll have more to spend enjoying your holiday season and a great start to 2016.
2. Spend more quality time with your loved one.
As a caregiver, much of your time spent with the patient ends up being in medical settings and discussing their medical status. While it is great to show them your support through the transplant process, both of you need some sense of normalcy in your lives. Find an activity to do with your loved one that’s not medical. It can range from going on a walk to finding a new show to watch together on TV.
3. Consider joining a support group.
Whether your loved one is awaiting a transplant or recovering from a transplant, it is nice to know that you’re not alone in the caregiving process. Support groups are a great way of connecting with other caregivers and comparing notes about the transplant process and how to cope with stress. Your attendance at a support group could prove highly beneficial- both for yourself and for other attendees.
4. Try something new.
When was the last time you did something completely new? When you’ve been a caregiver for so long, your days can start feeling monotonous. Trying a new activity, no matter how little, can feel like a breath of fresh air and will help in breaking up your routine of doctor visits and medical tests.
5. Take some time off for yourself.
Many caregivers may experience burnout at some point. The holiday season can be especially grueling for caregivers as they try to navigate busy schedules filled with medical appointments plus the many holiday parties and family gatherings. Take some time dedicated solely to you. It can be something as simple as turning off your phone for an hour to read a book or watch TV. Whatever it is you choose, make sure the focus is all about you at that time.
By: Allison McDaniel
As the festivities of Hanukkah begin this weekend, many families will celebrate the holiday with eight nights of lights and presents that bring joy to children and parents alike. Many others will have a more challenging journey, as they face their first holiday after the loss of a loved one.
Philadelphia native, Betsy Horen, was married to her husband and best friend, Bob, for more than 40 years before he passed away last year. They traveled the world together and were a perfect match. They both worked hard and had successful careers, but always kept a firm focus on living life to its fullest and enjoying every moment – whether it was going to the theater, visiting their time share in London, or going to their synagogue, Beth Zion-Beth Israel (BZBI), where they were part of a close-knit, supportive community.
Although this holiday will be a difficult one for Betsy, she speaks with gratitude about the nearly ten years that Bob was able to live because of one person’s selfless decision to say yes to organ and tissue donation. Bob had been diagnosed with Amyloidosis, a condition that causes abnormal protein to build up in tissues and organs. The disease attacked his kidneys, resulting in him needing a kidney transplant to survive.
“I feel like we were so lucky to receive the call that there was a perfect kidney for Bob.” said Betsy. “We were also lucky that Bob was healthy for so long and we were really able to celebrate and experience life together. Our lives were for each other, and I am grateful that he was able to live and share so many wonderful experiences.”
Betsy uses the word “luck” often, and expresses a deep gratitude for the life she was able to share with him. Since Bob’s diagnosis, the couple promoted organ donation at their synagogue by hosting The Robert Horen Annual Donor Shabbat, which educated other members about his transplantation journey and the critical need for individuals to register as donors. In addition, Bob spoke in support of donation in the community and at local schools. Betsy also became an advocate for donation during the time that Bob was waiting for his transplant. She began volunteering for Gift of Life Donor Program to give back, and became a huge supporter of Gift of Life’s Howie’s House, a “home away from home” for transplant patients and their families.
Since Bob’s passing, Betsy has dedicated an area – a gateway to the Legacy Garden – at the Howie’s House in Bob’s name and has also honored his memory with a memorial paver in the garden. Betsy said, “It’s so peaceful to sit in the garden and to realize how fortunate all of us are, and how lucky the people are that are able to stay at the Howie’s House. When Bob was first diagnosed, we would have to travel back and forth from Philadelphia to Boston for treatments. Because of his restrictive diet, we couldn’t eat at restaurants, so we had to bring containers of food with us. Going through it, I understand how the Howie’s House really gives people peace of mind.”
Religion has played a major role in Betsy’s life, and it will continue to this holiday as she navigates it without Bob. She proudly describes the numerous heartfelt dedications that she has made in his honor at their synagogue. Her goal is to dedicate a plaque on the seat where Bob always sat at BZBI – right next to her.
Gift of Life Donor Program has worked tirelessly for the past 41 years to coordinate donors’ generosity with those in need. Since 1974, Gift of Life – the organ procurement organization for eastern PA, southern NJ and DE – has helped save nearly 40,000 lives through organ donation, and enhanced over half a million lives through tissue donation. For more information or to register, visit donors1.org. It only takes 30 seconds to register.
By Talia Giordano, MSW, LSW
Finding Support Networks
Becoming a transplant patient or transplant caregiver can be difficult physically and emotionally. It is common to fear the unknown and become anxious about the “wait list” because it is a completely new journey. Often support from others who are also going through the transplant journey or have gone through it in the past, can be exactly the type of support a patient or caregiver may need. However, finding that kind of support can prove challenging if you live in a small town or are far from your transplant hospital. Below are some ways to find the peer-to-peer support that’s right for you.
The Transplant Hospital
Many transplant hospitals have support groups for patients and their loved ones. The groups are typically held monthly and sometimes even scheduled around clinic times, in order to make them more convenient for patients. Please talk with your transplant social worker to find out if your hospital holds a transplant support group.
Coalition Groups
Coalition groups are people who have joined together for a common purpose, such as organ donation and transplantation. In Gift of Life Donor Program’s service area, numerous coalition groups meet monthly to discuss ways to educate and inform individuals in the area about the importance of organ and tissue donation. Many of the attendees are transplant candidates or recipients as well as organ and tissue donor family members. While these groups are not necessarily support groups, they do allow transplant patients to meet families like them in their area, which is a great way to develop new support systems. To find a coalition group in your area please visit our Caregiver Lifeline webpage here.
Peer Mentor Programs
In a peer mentor program, you are paired with another patient or caregiver who has already been through what you are going through. Typically, you would be paired with someone who is around your age, who has successfully been through the same type of transplant and is doing well, both emotionally and physically. Please speak with your transplant social worker to see if your hospital has a peer mentor program. Please note, this type of support may be more difficult to come by, since not all transplant hospitals offer peer mentor groups.
The Internet
The internet offers a surprising amount of support resources for transplant patients! There are hundreds of websites available for transplant patients, which can be wonderful on one hand, but also overwhelming for the typical user. A good place to start for someone who is less internet-savvy is the UNOS-run, patient-friendly site called Transplant Living. It has a community section with stories from other recipients and a way to find support groups in your area.
Another great way to find support groups is through Facebook. If you already have a Facebook account, simply go to the main page and search the type of group you are looking for. For instance, a heart transplant patient might search “heart transplant support group.” You can then reach out to the group leader to learn who is a part of the group, what is discussed, if it is a private group, and how to get involved in order to get the most benefits. A great feature of Facebook support groups is they can be accessed from anywhere in the world. In addition, if you are unsure about joining a support group, Facebook is a great way to test the waters in a less intimidating setting while maintaining some anonymity.
If you would like more help locating a group in your area please feel free to email us at CaregiverLifeline@GiftofLifeFamilyHouse.org. Also if you are a transplant caregiver please consider joining out Transplant Caregiver Support Group
To honor Veterans today, we want to share Vernie’s story, a Veteran from the US Army who is a guest here at the Gift of Life Howie’s House!
“We miss serving in the military because it was really special to be able to help people.” – Vernie and Vernon
Now the Gift of Life Howie’s House’s turn to help, they have made this veteran’s transplant journey easier! Vernie Flores (left) and his family is originally from the Philippines and currently works as a civilian in the United States Army. He and his wife, Carla, traveled to Philadelphia from their home in Central NJ in the hopes of receiving a liver transplant. The Gift of Life Howie’s House is their “home away from home” while he is undergoing a liver transplant evaluation.
Vernie’s brother, Vernon (right), flew in from the Philippines where he now resides to be a support and caregiver for his brother during the week of transplant evaluation.
Both Vernie and Vernon are retired from the US Armed Forces. Vernie spent eight years with the army, four of which he spent stationed in Korea. In fact, he just returned to the US from his service in Korea just two years ago. Vernon is retired from the US Navy after 20 years of service. He served three tours in Iraq and one tour in Afghanistan. Both brothers miss serving in the military because it was really special for them to be able to help people.
Vernie hopes that after he receives a life-saving transplant he will be able to continue working with the Army.
Between the entire family they have more than 75 years in the US Armed Forces. Their grandfather served in WWII and their father served in the Vietnam War. Their sister and uncle were also in the Armed Forces and Vernie’s son just joined the US Marines in June of 2015.
Veterans Day is a national public holiday that is always celebrated on November 11th . Declared a holiday by President Woodrow Wilson in 1919, the holiday celebrates all members of the US Armed Services. Many Americans celebrate today by attending ceremonies or celebrations that honor their troops. In fact, the city of Philadelphia just hosted its first official Veterans Day Parade this year. Check out the video here!
“It is an understatement when we say the Gift of Life Howie’s House is a life saver; a thank you will never express our gratitude.” – Felicia Padilla, recent House guest
Felicia and Jose Padilla are a young, active couple from Rockland County, New York who have been married for two years. Felicia says that, for as long as she’d known Jose, she had not known a life without dialysis. “When Jose and I first met, his kidney had just failed and he was back on dialysis. Even on our honeymoon, I spent hours apart from him as he had to go to dialysis treatments during our trip.”
As just a young child, Jose was diagnosed with Alport Syndrome, a rare genetic kidney disease that resulted in full renal failure by the age of just 16. At that time, Jose was put on dialysis and officially listed for a transplant in New York. “Luckily, Jose was blessed with a transplant from his mother, Ines, who was a perfect match,” explains Felicia, “His first transplant lasted almost 11 years before it stopped functioning.” At the age of 27, when his kidney began to fail yet again, Jose and Felicia were once again back on the transplant journey. But without a family member to serve as a living donor, and because of Jose’s high percentage of antibodies, the wait time for a kidney in New York would have been approximately 8 to 11 years. At this point, Felicia and Jose began to explore other options.
“In order to give my husband a better chance at finding a match, we began the arduous testing process to be listed at transplant centers in other states,” describes Felicia, “After five calls for potential donors that did not work out, we received a sixth call for a kidney on the 28th of June and rushed to Philadelphia in the middle of the night. Thankfully, Jose had finally found a match.”
A match was found, but Philadelphia was still three hours away, and the Padillas did not want to have to commute six hours back and forth to the hospital for his treatment and follow-up care. That’s when Jose’s transplant coordinator suggested they consider Gift of Life Howie’s House, where they stayed for four weeks over the summer while Jose recovered from his long-awaited and life-saving kidney transplant. “I cannot imagine what recovery would have been like without this safe haven,” says Felicia of the Gift of Life Howie’s House. “We could have never afforded a hotel each night. The House was an affordable place where we could comfortably stay and it was only about 20 minutes from Jose’s hospital, with free transportation provided through the Gift of Life Howie’s House shuttle service.”
The Padillas found comfort at the House and also greatly enjoyed the Home Cook Hero meals provided by volunteers each day. As Felicia states, these home-cooked meals were “always delicious and took away so much of the stress of recovery after being in the hospital all day.” Felicia and Jose also took full advantage of the free laundry services and gym available to them, allowing them to feel, in Felicia’s words, “right at home.” And of course, the comfort of connecting with other individuals on the transplant journey – offering advice and sharing experiences – helped them immensely.
“Another one of our favorite things about Gift of Life Howie’s House,” Felicia says, “were the events they planned for the families. There was a Sunday where any guest staying at the House could receive a free haircut from a volunteer stylist in the area, a night where we tie-dyed shirts, and even a carnival night. It was amazing to see all the wonderful things Gift of Life Howie’s House provides for their guests.”
Felicia sums up her experience saying, “Gift of Life Howie’s House was a beautiful and comfortable place to rest our head at night—it was beyond our expectations. It offered us peace of mind and a place where we could ‘take it easy’ and focus solely on recovery. We were able to forget about the other stresses of life and simply live in the moment. We felt extremely safe there.”
Felicia and Jose say they now look forward to their second chance at a “normal” life together: they love traveling as much as possible, being outdoors and active and spending time with their dog, Delia. Now, thanks to Jose’s transplant and successful recovery at the Gift of Life Howie’s House, this is all possible. As Felicia notes, “it is an understatement when we say the House is a life saver; a thank you will never express our gratitude.”
“Cooking for the Howie’s House has helped us heal and move forward after losing Gary. It feels good to give back and support where we can – even if it is only something as simple as preparing a home cooked meal for the residents.” – Trish Reichert, Donor Mom
My son Gary Reichert passed away suddenly on November 5, 2013 and by choosing to donate his organs, he gave the gift of life to four people and restored the sight of two more. We decided to start cooking at the Howie’s House in June of 2014 as a way to honor the lifesaving gift Gary gave to others and to help keep his memory alive. “G$” was Gary’s nickname. We chose to name our group Team G$ when we first formed our team for the Donor DASH in early 2014. We decided to continue using it when we come to cook at the Howie’s House.
Team G$ has become a source of healing for all of us. Our group is made up of my son’s friends and family. His loving girlfriend Jennifer, sisters Shannon and Tiffany, cousins Sherry and Jessica, his great aunt and uncle Sara and Mercer, and Gary’s beloved niece Adriana all help make Team G$ a reality. And our team continues to grow—friends of friends and extended family members participate, some of them never having met Gary! The support and camaraderie of Team G$ and volunteering for the Howie’s House has become an outlet to help us all honor Gary’s memory and his gift to those he’s saved.
When we come to cook, we always try to do something different, something that hasn’t been made in a while for the house guests. We try to think out of the box. In the past, we have served mozzarella stuffed meatballs, homemade Salisbury steaks, root beer floats, homemade soups, tuna casserole, Sloppy Joes. We want to make something comforting and delicious that the house guest would make in their own home for dinner.
Cooking for the Howie’s House has helped us heal and move forward after losing Gary. It feels good to give back and support where we can – even if it is only something as simple as preparing a home cooked meal for the residents. We enjoy meeting and getting to know Howie’s House guests, staff and interns. We have a great time working together and preparing a meal for everyone to enjoy. Every moment inside the Howie’s House is memorable.
By Talia Giordano, MSW, LSW
During the warmer months, many caregivers may wonder “Will I get a vacation this year?” Coordinating vacations can be difficult, especially if you are a caregiver to a transplant patient. It is common for caregivers to have fears about taking a transplant patient on vacation far from their primary care doctor, transplant team and pharmacy. Caregivers may also feel guilt when taking a vacation without the patient. A vacation can be vital for many people because it allows for relaxation from a hectic schedule. It also can allow a caregiver to regroup and re-energize for whatever their tasks are when they return. Below are some tips that may be helpful when planning for time away.
- Talk to the medical team and ask for resources – The medical team may have suggestions for prescriptions or other medical issues you may encounter while you and the patient are away. Your medical team may also be able to direct you to medical assistance in the area to where you will be traveling. Lastly, if you are traveling without the patient, it is important to inform the medical team that you will be away and that someone else will be assisting the patient during your absence.
- Talk with friends, family and other support systems – Similar to talking with the patient’s medical team, it is important you let your support systems know of your plans so they can step in to assist as needed. Caregivers sometimes find it difficult to ask others for help, but your friends and family want to help, they just may not know how. Be specific with your requests – don’t just say “I could really use your help while I’m away.” Instead ask, “Would you be able to help me by taking [the transplant patient] to their doctor appointment at [this time].” Being specific about your needs will give you relief, knowing certain tasks are being handled, and it will help others to understand exactly how they can help.
- Take time off even if you can’t take a vacation – Many caregivers feel that time off needs to be spent taking care of the patient and this is untrue. All caregivers must take time for themselves to relax. Even if you are unable to take a vacation you may be able to take a “staycation.” A “staycation” is when you take time off for yourself and stay local. During this time you can still do things you love and plan for local trips to museums, parks, or events in your area.
- RELAX! – A vacation is a time for you to relax, re-energize and regroup. Use these tips to plan ahead so that during your time off you can focus on yourself. Enjoy the people, places and things you love and HAVE FUN!
For more information, email CaregiverLifeline@GiftofLifeFamilyHouse.org
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