Monday, 6 September 2021

Caring Families Need Help With Financial Planning - It's Here

I absolutely love it when family caregivers turn their experience into a business opportunity after caring ends. And when they create a service that I know we caregivers really need, I blog about it! Today I'd like to tell you about a conversation I had about a company called CaregiverCapital I spoke with caregiver David Tyson, the founder and CEO and here's how he answered my questions:



Tell us about CaregiverCapital. What's the origin story of your company?

As a teenager, I served as one of the primary caregivers for my grandfather after several health scares required him to move in with my family. While I quickly adapted to this role and the challenges of being a caregiver, my family struggled to afford the care my grandfather needed. The financial hurdles of long-term care were simply overwhelming. Serving as my grandfather’s caregiver was a challenge, but it was also my greatest blessing – and I resolved to help alleviate that financial hardship for others through CaregiverCapital.


How did you come to realise that there is a need for your services in the caregiver community? Tell us about the services you provide. 


As I began to proactively plan for my own parent’s care, I was struggled to find any guidance to help me understand the financial components of long-term care. I began talking to friends, colleagues, and over 100 caregivers who all shared the same challenge – they simply had no support to help navigate the many confusing financial aspects of long-term care. To fill this need, I started  CaregiverCapital where we provide three primary services: complimentary diagnostic sessions with a licensed elder care financial planner, ongoing financial planning consultations, and a monthly newsletter covering different financial topics. CaregiverCapital is headquartered in Chicago with a network of financial planners licensed to support clients in all 50 states across the country. 


To learn more, clients can reach us via email at: [email protected] or visit our website at: caregivercapital.com


What are some typical challenges that caregivers have when they approach you and how do you meet those challenges?


One of the biggest challenges is that caregivers ‘may not know what they don't know’ and can be overwhelmed by all the confusing aspects of different financial decisions. To support our clients through these challenges, we first provide all new clients a free diagnostic session with one of our licensed financial planners where we talk through each caregivers’ unique financial situation, goals for the future, and any immediate questions. Using this information, we then build a financial ‘playbook’ for each of clients that outlines the different financial pillars of their plan and simplifies the decision-making process. As our client’s needs change, we offer ongoing consultations and free resource guides that help to address their financial questions by simplifying different financial topics into clear and actionable guidance.

 

If there is one piece of advice that you have for caregivers regarding financial security, what would that be?


Start the conversation early. Discussing anything related to long-term care needs with your parents or a partner can be a difficult and uncomfortable conversation. However, just starting the dialogue is incredibly powerful and opens the door to being thoughtful in your planning. This dialogue is especially important when navigating the many aspects of financial planning – whether its purchasing a long-term care insurance policy or saving for retirement. And getting the conversation started early will help you to formulate a plan about those different aspects of care that require proactive planning.



 





Saturday, 28 August 2021

PTSD in Caregiving - When Little Things Feel Life-Threatening

One day when I was 17, I happened to be home alone with my father. As a result of three strokes a year earlier, Dad was paralysed on his right side and had lost his speech. On this particular day, I remember in vivid detail walking down the hall into the living room. I recall feeling immobilized by fear. Dad was shaking and his mouth was open, his head pulled to one side. I thought I was witnessing another final stroke that would kill him. Later that day, the hospital confirmed that it wasn't a stroke Dad had suffered, it was a seizure. 

Fast-forward to September, 1990. It was the very first day of my son Nicholas' preschool and I remember sitting at the kitchen table with a newspaper and coffee, savouring the deliciousness of my first respite from total care in two years (Nicholas has severe CP and is medically complex). The telephone rang. It was the preschool director who said, "Nick has had a seizure and is on his way to the hospital - he is not responsive." I remember thinking, "Nick will die or he will suffer further brain damage that will change him from the son I know and love into someone I don't recognize." Bursting through the ER sliding doors at the children's hospital, I could hear him crying. "Oh thank God", I thought, "he's OK." 

But I was not OK. For years after that, when the telephone rang, my throat constricted and my heart raced. The telephone became an ever-present omen of some deadly threat. Every single ring made me check that everyone in my family was safe even if Nicholas was in my arms and Natalie and my husband Jim were horsing around in the next room. 

Presentation slide based on my experience


And that's not the only mind game that played out in my head. "Nicholas was OK after his seizure so it wasn't really a big deal - I am just over-reacting and being silly", I said to myself. I also thought that with so much "practice" in helping Nicholas survive traumatic medical events, I should be strong and stoic. I should be able to react in a clinical way because I had normalized trauma in mothering him. Man, was I wrong. With each medical emergency, I got worse at handling the "small" stuff. Soon enough, every test, every needle prick, and certainly every surgery felt like doomsday. 

But I never thought of my emotional response to mothering a complex child as PTSD. I thought only soldiers or paramedics had that - until a conversation I had with my friend Dr. Pat McGrath, a psychologist and researcher in the area of childhood disability and family. Pat was telling me that a grant application he'd written for PTSD in adults had been turned down. When he described the symptoms he wanted to treat and evaluate, they sounded very familiar. So I suggested that he investigate the syndrome in parents of children with complex care needs. The rest is history, so to speak. 

I am a parent partner on Pat's Life Beyond Trauma research study. We tested an online coaching narrative exposure treatment program on parents of children with disabilities who had PTSD symptoms. The data from the study is not available yet, but throughout the evolution of the study, we have learned a lot about the last after-effects of traumatic events in the lives of caregivers.

Very recently, Pat and I presented the study to a group of caregiving parents in a webinar series called "Luke's Legacy Family Research Rounds" hosted by bereaved Mom, Rachel Martens. If you are a caregiver and have experienced traumatic events in your life including in your caring role, I encourage you to listen to our presentation and the group discussion we had afterwards HERE. If you believe that you suffer from PTSD, share this information with your GP or therapist. 



Wednesday, 11 August 2021

Cooking to Grieve and Remember


Yesterday (I think it was yesterday - time is a blur nowadays), I was in the car on my way to buy groceries listening to a show called Q on CBC radio. They were playing an interview with the Korean-American author, Michelle Zauner. When Michelle isn't writing books, she is a rock musician who goes by the name of Japanese Breakfast. Anyway, I wasn't paying too much attention to the show until I focused on learning that the author had penned a reflection on food and the memory of her mother who died of cancer a few years ago. Zauner's new book "Crying in H Mart" refers to how shopping for Korean food in the Asian grocery store brings the author to tears. For Zauner, cooking is a way of "loving her mother back" and evoking memories that are filled with the aromas and tastes of home. 



In a 2018 New Yorker viral article with the same name as the book, Zauner observed, "Within the past five years, I lost both my aunt and mother to cancer. So, when I go to H Mart, I’m not just on the hunt for cuttlefish and three bunches of scallions for a buck; I’m searching for their memory. I’m collecting the evidence that the Korean half of my identity didn’t die when they did. In moments like this, H Mart is the bridge that guides me away from the memories that haunt me, of chemo head and skeletal bodies and logging milligrams of hydrocodone. It reminds me of who they were before: beautiful and full of life, wiggling Chang Gu honey-cracker rings on all ten of their fingers, showing me how to suck a Korean grape from its skin and spit out the seeds."

My own Mom hated cooking and didn't really like eating very much either. Memories of my mother's cooking are of peanut butter sandwiches and a concoction that we all called "stupid stew". I think that's why my sister Karen and I spend hours pouring over recipe books and crafting menus that perfectly match both the season and the palates of our husbands and children. Karen and I are both emotional cooks - for us, feelings call for food. But our tearful reminiscing about our Mom goes better with wine and maybe some chocolate. 

The pandemic has made me reflect a lot on my own mortality. I am glad that a few years ago, I made a scrapbook of family recipes and special memories for my daughter Natalie. It makes me happy that after I'm gone, she will have this memento of growing up in our kitchen, surrounded by mixing bowls, chopping boards and the smells and tastes of family recipes. 
I included an image of me in my dressing gown, searching for a cookbook -


and I added another picture of our annual Christmas shortbread cookies made from my Nana's recipe. 



When we lose someone we love and we are slowly recovering from the trauma of caregiving, food helps. Cooking can be a mindful ritual full of healing and comfort. And crying in the aisle of a grocery store can be the proper reaction for a daughter who misses her Mom. 

Thursday, 29 July 2021

When My Heart Gently Whispered.... It's Time to Let Go

It is my pleasure to host this guest post from caregiver and writer, Ruth Berzins. This blog post is part of a series on grief published on the Madiha Foundation website. The Madiha Foundation's mission is to improve people's mental health and empower women. The foundation offers simple yet effective programs as well as a blog that reflects issues related to its mission and values. Madiha's core values are compassion, respect and creativity. - Donna

I remember that day like it was yesterday. It was a Sunday afternoon in March of 2014 and I was sitting by my Mother’s bedside at the nursing home. It was quiet that afternoon and all I could hear as I sat there was the gentle rhythm of the oxygen machine. My Mom’s health had started to decline and she was gradually getting weaker so I sat by her bedside, sitting quietly so that she could rest. 


For the past number of weeks, my sister and I would come in the evening to visit her and my Mom would share how her day went and how she was feeling. Always in the back of my mind was the hope that gradually she would be able to get stronger and be able to come back home again. I never shared that with her, but that was always my hope. 


I remember one day my Mom mentioned that she missed having fruit, as she was adjusting to the meals at the nursing home. So I would bring her raspberries and blackberries to help with her strength. And she always enjoyed them so it seemed the right thing to do. 

Yet this Sunday was different. It was the way that she spoke that I could sense the difference. Even after all these weeks of visiting with her, I still hadn’t found the courage to share my observations with her. It was that afternoon that I realized that she wouldn’t be coming home again. That what I was witnessing was the gradual decline of her health and I needed to prepare myself emotionally for the days ahead. 

Up until then, my focus had been on assisting her and helping her get stronger. And seeing that she was safe and cared for. But in the silence by her bedside, something changed for me that afternoon. I had loved her and been devoted to her my entire life …..but now the time had come to let her go. 


I had done everything I could to assist her and now my role would be a different one. Now was the time to be close by her side, to witness the changes as she became noticeably weaker and to be by her bedside as she passed on from this life. 

There was something sacred about that afternoon. There was a deep knowing in my body that her life as I knew it had now come to an end. So I needed to let go of my hopes and dreams of her coming back home to us and to honour the years that she had been a part of our lives. 


My Mother’s health continued to decline and just 2 ½ weeks later she was transferred to the Palliative Care Unit of the hospital. We were fortunate that she was fully aware of her surroundings right till the very last day so we had a chance to be with her and to say our goodbyes. She died on a Sunday morning, with all of the family there, by her bedside. 

Ruth's Parents

About the author: Ruth Berzins is a guest writer for the Madiha FoundationThis blog post is the third one in a series about grief. The series began with “In memory of my father” followed by “When a new wound makes all the old wounds ache”. Apart from caregiving, Ruth has worked in the field of employment counselling for a period of 25 years and has loved the opportunity to help individuals reach their career goals. She is passionate about the need for improving the mental health of individuals and the need to ensure that all people have access to a safe and supportive work environment.


Monday, 21 June 2021

WHEN IN DOUBT, DANCE IT OUT! Evan Kharrazi's Approach to Caring

Evan Kharrazi is a caregiver, a dancer, a wellness coach and an entrepreneur. Evan took his personal experience and built Chill Time TV - an app for caregivers seeking to embed dance, healthy eating, fitness and fun into their daily lives. Evan's motto inspires me: "When in doubt, dance it out!" Here's a bit of Evan's story followed by his answers to my questions. 

I was seventeen, amidst training for my Juilliard audition when my mom started receiving chemotherapy treatment on her path to being a breast cancer survivor. Taking care of someone else was just a way of life in my big family.

In my professional career, I battled the pressures of balancing work, personal life and health. I had no me time. Sleep eluded me. I barely had the energy to move outside of work, much less exercise and stretch before bed. I was stuck in a rut without the faintest idea of how to claw myself out.

I decided to put movement back into my life by returning to my favorite form of expression: dance. I started dancing to feel relief and recharge from all the demands life was throwing at me.

When we take care of ourselves, we're in a better position to serve as a pillar of support for people we love. We're able to lay a foundation of healthy practices to experience the joy in our life again.

So whatever you can do to build back your strength, know that a healthy life is within your reach and your possibilities are endless.

                   




Q: Evan, you cared for your mother. Tell us about her. 

My mom is amazing. Not only was she incredibly supportive of me as a male dancer, but she was there for me in anything I set my heart to. My Mom taught me the discipline of giving 110% percent and to lead with respect, dignity and professionalism. Also, I learned from my parents to always give back. If I was to go away for college and enrich my life further in travels and education, I knew I had to come back and make my community better. "Always leave it better than you found it", was a common phrase I heard in my upbringing. My mom and my dad who are both survivors of cancer, and my brother who was diagnosed with Cystic Fibrosis from the age of three - are all an inspiration to me and each one of my siblings. Our family motto is about living with a zest for life and giving it your all in every moment - no matter what may hit you tomorrow. We are stronger together.

Q: As a caregiver, what grew in you? Also, are there aspects of yourself or some dreams you had once that died because of your choice to give care to your Mom? 

Connection - I have a deep sense of care and empathy for others, having been surrounded by so many raw experiences in my upbringing. The compassion I have for others is so high that I often find myself connecting with people before they even tell me their story.

When my mom was sick, I was auditioning for Juilliard to pursue my dream as a professional dancer in NYC. So while training intensively and caregiving at the same time, I really had to consider my next move and if I was going to decide to be home with my family for the next year or pursue my dance dream as an early graduate of high school. I felt I was constantly in a catch 22 in my life at that time. Should I be home or should I go and reach for the stars? Being in a big family, that personal guilt runs deep now no matter how far away from home I am.

Q: As caregiving transformed you, what did you learn about what is most important to you? 

Presence - to be fully present in my life because tomorrow is not guaranteed. There was so much going on in my big family and we were all raised to shoot for the stars in whatever we found a purpose in. But sometimes it takes us away from seeing everything around us and taking in all the beautiful moments right in front of our eyes. "Smell the roses" - yeah, there were many times when I was going so fast I didn't slow down to tap into all my senses.

Q: How do you help other caregivers by sharing what you've learned? 

I inspire caregivers to just move. Just move, moving, move forward, move your body, exercise your mind, just move. The power of movement can take your pain away and it can take the pain away of others. I lost sight of my true passion for dance when I was trying to balance caregiving and my professional career in the hotel industry. If only I had a way to put movement in my life, even for 10-mindful minutes a day - my day would have turned for the better and I could find the strength to collect myself and keep carrying on.

Q: What do you think are the main barriers to a joyful and healthy lifestyle while giving care? 

As caregivers, we selflessly put others first. It feeds our soul and especially for family caregivers who cannot walk away from their situation. I think another barrier is the conflicting noise we are surrounded by in this digital age and how this idea of health and nutrition is approached in so many ways - to the point of stalling what we need to do for ourselves (not copying someone else's approach, plus this idea that deprivation is the only way we can get the body we want). This is done through a behavior change approach which is not sustainable. We need to tap into habit-based intervention in a consistent way to ensure we get the daily self-care we need. This is why I want to focus on bringing self-care accessibility to caregivers who might not have sought it out themselves. Additionally, our society has this idea that you need to have time and money to truly practice self-care and a healthy lifestyle. Much of my research during Covid was influenced by the Okinawan/Japanese culture which is very much centered around a concept of "Ikigai" (reason for being) and how we can incorporate what we love to do into our daily lives. So, focus on what you love to do - what gives you that special energy and apply it everyday. Simplify your life, don't overcomplicate it.

Q: You incorporate movement and healthy food into your coaching - why are these so important to you? 

Well, I received my integrative nutrition health coaching certification during Covid, having really been interested in nutritional science and the impact of plant-based food on reversing cancer. Having been a caregiver to sick family members, I was on a mission to fight disease through diet. Most recently, I have battled kidney stones and have had to rethink the way I eat (again). Gut health is our connection to the outside world - and is so important that did you know that 90% of serotonin is produced in the gut and 70% of our immune system is impacted by the cells in the gut! We really are what we eat.

The power of movement is something I learned from a young age, not only coming to terms with dance being my most fluid form of expression but noticing it took other people's pain away when I performed for them. Movement is truly our universal language and allows us to tap into our own aesthetic. It only takes 10-minutes a day of movement to turn your day around.

Q: Finally, Tell us a Fun Fact About Yourself

I am Jewish and half Persian and half Eastern European. My hair and the way I move my body are very much a reflection of my mixed cultures. 
                             





Monday, 14 June 2021

BELONGING WHILE CAREGIVING: WHERE DO WE BELONG?

Photo by Geoffroy Hauwen on Unsplash


In the trenches of caregiving, we can feel very, very alone. We may never experience a sense of belonging except in that tiny world of our loved one's bedside (and possibly not even there). How can we feel belonging when our caring lives become so immersive and closed within the four walls of home or hospital? 

Lately I've been wondering if, when and how we feel belonging....

  • In our own skin
  • With our loved one
  • In our family
  • At work
  • In our friend group
  • In our faith group
  • In our neighbourhood or community
  • In caregiver groups
Do you feel belonging in these spaces? Try rating your sense of belonging (or how comfortable you feel) in each space. Rate your belonging on a scale of 0-3, 0 for no sense of belonging at all and 3 for Feel Very Comfortable and at Home in that space. 

What does your rating tell you about how to spend your time and energy within social spaces? What does your rating tell you about support that you might need in order to experience belonging? What are your barriers to belonging? What are your possibilities and opportunities? Comment to share your thoughts and feelings! 

Sunday, 23 May 2021

SHIFTING FROM "YOU" TO "US" IN CAREGIVING

There might be a good reason that nurses ask patients, "How are WE doing today?" The caregiving relationship is one that consists of two people who are 'in it' together. So why do we find it so difficult to understand that both of these people need care, not just one? 


                                                   Photo by Shahzin Shajid on Unsplash

Eva Kittay, an author, philosopher and mother of an adult daughter with severe disabilities, describes the perfect caregiver (when we are at our best with our own loved one) as a ‘transparent self’. In Eva’s words:

In the transparent self, the perception of and response to another’s needs are neither blocked by nor refracted through our own needs and desires. A transparent self attempts to intuit and respond to the other’s own sense or understanding of their own good, and does so for the other’s own sake. (2007, 53)

In other words, the ‘transparent self’ caregiver is not driven by ego or self-interest. She or he is driven by love and necessity. But Kittay also warns us against becoming immersed in another's needs:

An ethics of care is fundamentally other-directed, but it is an ethic that understands that our own well-being is never entirely independent of the well-being of the other. 

So how can we reconcile 'good care' for another with 'good care' for ourselves? Is the answer in the pages of women's magazines that scold us for not performing enough 'self-care'? No. I think the fundamental flaw with this individualistic idea of self-care is that it denies the care relationship. We shouldn't have to (and very often we CAN'T) remove ourselves from our loved one in order to perform some act of self-care or even self-preservation. No, we have to care for ourselves as we care for another. As we soothe loved ones, we must focus on soothing ourselves. We must pour two cups of tea, not say, "I'll have mine later." 

Of course there will be times that pain, anxiety or other forms of distress will make this dual approach to caring impossible - those times will be for caring that is 'asymmetrical' or one-way. But one-way caring can become a habit and that can cause damage to all concerned. Limping or favouring one leg can cause sore hips and arthritic knees in the 'good' leg. The same is true of asymmetrical caring. Folding self-care into caring is a shift that once practiced, feels like 'good caring'. Part of that equation is a realization that we are (usually) receiving care from our loved one, even if they are non-speaking. A calm presence or a squeeze of the hand are forms of solace to which we can assign great, personal meaning. 

Kittay also talks about how the 'completion of care' necessitates that care must be received (so good intentions are not good enough). How is care completed for your loved one? The more complicated question and urgent question is, "how is care completed for you?"