Friends Are Found On Every Road

If you’ve read my previous posts, you know my caregiving/patient advocacy journey has been a roller coaster ride filled with unfathomable situations, lots of stress, and a full sway of emotions. While it’s certainly been challenging on many levels, there’s also been lots of beauty intermixed and I want to share one aspect of that with you today.

I hope the day will be a lighter highway,

For friends are found on every road.

Can you ever think of any better way,

For the lost and weary travelers to go.

If you don’t recognize these words, they are the first lyrics from Elton John’s song titled “Friends” – and it’s spot on. To varying degrees, I’ve been a weary traveler on this caregiving/patient advocacy journey. At times just “in the zone” and on autopilot…sometimes totally exhausted with nothing left inside to give, except a blank stare at a wall. Amidst it all, staying connected to myself, let alone friends, has been challenging and morphed over time.

With that said, although the amount of time to chat and see friends has changed since my mom’s health crash in June 2018 – Covid notwithstanding – I’m beyond grateful for all of their check-ins and words of encouragement via text, phone, and email. Even if that doesn’t lead to actually speaking with them because of time constraints and situations, it feels wonderful to know they are thinking of me…and my parents.

Throughout time, I’ve made friends wherever life has taken me personally and professionally. It’s been reinforced that along a continuum of time that some people come into our lives for a moment and others stay forever, through the twists and turns, from love to heartache…and everything in between. Each friendship is unique, and time doesn’t define any of them for me. Whether it’s a friendship since I was a kid or someone I have met along my caregiving/patient advocacy journey, I’m grateful for what they each bring to my life.

“For friends are found on every road.”

While it’s impossible to mention every old and new friend that has meant so much to me throughout this caregiving/patient advocacy journey (and in life overall), I want to share about some who I’ve met along the way since June 2018. They have been godsends for varying reasons, and I’d like to share why. The following are in no particular order of importance, because there isn’t such an order and they each have a special place in my heart.

So, let’s start with…

Marcia – She was the first I met on this journey. What can I say, she is one of the funniest and most fun people I know! I met her during my mom’s rehab stay in June 2018 at Memorial Health South in Hollywood, Florida. As a patient care tech, she was incredibly attentive, kind, caring, and compassionate with my mom (and me and my dad.) She always brought her megawatt smile and positive attitude into the room. Marcia is so funny – she can make the hardest of curmudgeons laugh and is as genuine a person as you’ll find! Since we first met, Marcia has become a dear friend that can help make a gray sky blue. I can laugh with her and talk about anything…no matter where or what she’s doing!

Maria – What a blessing! Like Marcia, she’s become a dear friend who I rely on at times for everything from medical knowledge to laughter to levity in the face of caregiving/patient advocacy’s roller coaster ups and downs. Maria is a nurse who is wicked smart and an overall incredible human being. I can’t overstate how wonderful she has been. On the healthcare front, her knowledge has been tremendously helpful, especially in urgent situations when I couldn’t get a hold of one of my mom or dad’s healthcare professionals…or preemptively to help me more effectively communicate with doctors. Just as important, her humor, (un)common sense, genuine caring for me/my parents, and infectious laugh always makes me smile!

Mariane – If you believe in angels, you may know of her. I can only begin to express my gratitude to Mariane. Since June 2018, my mom has had to have SO much blood drawn on an ongoing basis. Dozens and dozens and dozens of times Mariane has drawn blood from my mom…and now my dad, too. Her calm and genuine caring nature (not to mention her professional aptitude) have been a source of peace for my parents – and vis-à-vis, me. I can only begin to express how kind and compassionate this angel is and the warmth my parents and I feel for her. She has helped them/us feel calm in moments of great uncertainty – not knowing what the blood draw of the moment will reveal. She’s been there each time with hugs for us (sorely missed during Covid) that were so comforting and always with the calmest of energy conveying, “I’m here for you guys.” We consider Mariane part of the family!

Hmmm…did you notice the names of each of these people begin with “M”? To dispel any thoughts that only people whose names begin with “M” are friends, I’ll switch it up. 🙂

Robin – I will be forever grateful for her. Another nurse friend, who is wickedly smart. Professionally, she’s an executive healthcare consultant and has decades of experience helping families navigate the healthcare system…as well as caregiving for her mom. After 15 months of nonstop caregiving/patient advocacy for my mom there was a lull in the hospitalizations, and I needed to take that opportunity to get away. I was burned out! The challenge – finding someone supremely capable and trusted to cover if something happened with my mom. Robin had always been helpful when I’d run things by her. It was at a whole other level of kindness when she offered to be the point person of Team Keitz (that included the three “M’s” above), who looked after my mom while I was gone for three weeks. I was able to get away to Paris and Amsterdam to re-energize, and her help provided me peace-of-mind while I was there. Robin will always be a rock star to me!

MJ & Gloria – These wonderful women are the nurses for my mom’s nephrologist and rheumatologist, respectively. During the first 22 months after June 2018, they helped make things easier when it was off-the-charts stressful with my mom’s 17 hospitalizations, and interspersed outpatient tests, blood work, and doctor appointments. I was able to count on them to be excellent communicators with the doctors. This was especially true with MJ, who sometimes I was speaking with 2-3-4x/day and countless times each week. She always handled things with a positive attitude and kindness, and they both do to this day. I consider them friends and am thankful they are there for me and my mom.

Lucy – I met her on one of the first visits to the clinic in July 2018. She checked my mom in for an appointment with the nephrologist and rheumatologist, and we knew immediately she was special. We saw her in the clinic every week or two (often multiple times each week), and she was an essential conduit to nurses and doctors during my mom’s hospitalizations. Lucy always asked how we each were doing before anything else was discussed. It was genuine and solidified a budding friendship. She’s been so kind to answer questions and help navigate the complexities that come up in scheduling and accessing the healthcare providers. Talk about a good soul and someone who I can call upon if needed – Lucy is it!

Cheryl – This is actually the first person outside of my mom’s care. She is the nurse for my dad’s urologist. Although I haven’t had a lot of contact with Cheryl as with my mom’s extensive healthcare team, she has made a lasting impression. She has been so warm and kind from the time my dad was first diagnosed with bladder cancer in October 2020. This was a new world for my dad and for me as caregiver/patient advocate. I could tell you so much about my mom’s health issues and navigating the clinic setting, but cancer was a new thing. Cheryl has made everything easy with her genuine caring and compassionate demeanor, and is so accessible whenever I have questions, concerns, etc. I’m grateful!

Lisa – My fun Philly sports friend! After the first year of craziness with my mom’s situation, I had lost interest in sports – and a lot of things that I had enjoyed. A big part of that – I was exhausted from the nonstop caregiving and patient advocacy. Lisa’s enthusiasm (which is an understatement!) for the Philadelphia Eagles was infectious and helped me enjoy watching once again – especially with the hoagies we would pick up before the games. Although Covid has changed our in-person football watching, we have a stream of texts going on any given game day! Unfortunately, without the hoagies — they went out of business. Anyone know a good hoagie joint in the Delray-Boynton-WPB area? 😉

“J” – Another nurse who is an incredible human being! Every 4-8 weeks my mom needs an injection of Arinesp, which she had been receiving at Cleveland Clinic Florida prior to Covid. “J” has been so kind to offer doing this for my mom at the house. This gave us peace of mind, because each time it was one less potential exposure considering my mom had little-to-no vaccine response – and has an undetectable level of immunoglobulins. “J” has also offered to help in other healthcare situations, especially related to my dad’s home care needs during cancer treatment. Fortunately, we haven’t needed that assistant yet, since he has tolerated it well. “J” is a sweetheart and true friend!

Amy – As someone who has lived with serious chronic health issues for most of her adult life (now in her 50s), she has been a source of one-off validation. What do I mean? Sharing with her what my mom goes through, Amy understands what that’s like on many levels in a way I can’t. The depths of her empathy are boundless. Although I’ve always considered myself an empathetic person, I can say unequivocally that my interactions with Amy have taken it to another level. Not only that – she’s so much fun to talk with about anything and her laughter helps even the darkest days. I’m grateful for this friendship that can explore any topic – that’s special!

Giorgio/Suna & Martin/Gabi – What can I say about these extraordinary people?! I actually met Giorgio and his wife Suna in San Francisco at a startup pitch event shortly before my mom’s June 2018 health crash. I loved hearing about their vision for www.magic-horizons.com (VR for Relaxation) and we began a friendship that unexpectedly turned into a business relationship two years later. Throughout my caregiving/patient advocacy journey, the two of them, along with Martin (Giorgio’s brother) and his wife Gabi, have been so incredibly supportive. From our time together in Paris and Amsterdam, to our many Zoom conversations over the years, I’m grateful to have them as a client and above all as friends!

Well, I shared about these new friends at the risk of missing other new friends that are also important. Plus, I could write a separate blog post (and likely will someday) about the importance of my “old” friends along my journey. Whether old or new, it’s important every friend knows how much they mean to me, and my caregiving/patient advocacy journey. Individually and collectively, their caring, love, and support are an immeasurably beautiful part of my life. I cherish each interaction, which are as wonderfully unique as are the friendships.

Whether it’s text, email, or phone (and in person again someday), I appreciate their understanding that I may not have time or energy to interact – especially by phone. I wish there was time to talk to everyone and do so without the stress of time constraints. So, for now…in place of that, I simply say, “Thank You For Being A Friend!” This is for each of you –> https://youtu.be/voNEgCKzves

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Caregiver/Advocate Takeaways

• Friends are so important anytime, but especially during challenging life experiences. As time constraining and exhausting as it can be for caregivers and patient advocates, try to have interaction at least by text with one friend a day. Maybe it’s to vent. Maybe it’s to be silly and laugh – always a good diversion. Maybe it’s to just say hi. Maybe it’s to cry. As hard as it can be, try to pull yourself out of isolation mode – which is an easy place to go considering the stress and exhaustion you’re dealing with on a daily basis.
• Laugh…it’s good for the mind, body, spirit, and soul!
• We may feel guilty because our lives as caregivers and patient advocates don’t enable us to give time to our friends like we used to…and want to. Most friends will understand and be there for you unconditionally. If you’re concerned that you’re losing a friendship…try to communicate. They are also human, and you may not otherwise know what they are thinking or feeling. Our situations don’t absolve us of the need to communicate. Let them know how you feel about them, express specifically what you need, and ask what they need. You may not be able to give it to them (and vice versa), but hopefully you can understand each other, get to a better place, and alleviate the added stress (that you don’t need) from a friendship that’s important to fuel you…not drain you.
• Finally, although I didn’t get into anything heavy about caregiving or patient advocacy this week, I’m going to include the following as after my previous posts. It’s that important! Know the American Hospital Association’s Patient’s Bill of Rights.

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Thanks for reading Friends Are Found On Every Road. As with other 1 Day 1 Week posts, you’re welcome to share your thoughts below and/or share a story as a full blog post of your own. Whether you’re a caregiver, patient advocate, or involved in caregiving/patient advocacy in some way, the worldwide community of caregivers and patient advocates can benefit individually and collectively from “hearing” what you share about your experiences.