Interview at the White Label conference - Las Vegas

Your talk was quite emotional. Did you expect it to be so?

Expect?  More like hope. It’s important in my mission to touch people and raise eyebrows. It doesn’t take much for my passion about this issue to come out. It has affected me greatly and still does. I’m glad I touched people, including those which may not have been aware of what destroys families.

You spent a few minutes talking about re-defining or I believe you said, raising the bar in regard to caregiving. Do you think that’s possible?

It won’t be possible if people don’t hear the stories and the pain that families suffer throughout the caregiving process. I’m the first one to admit I turned my head when hearing about poor caregiving. I wrote it off as bad health insurance or poor nursing. But when I started to hear the hundreds of stories of families being torn apart from the lack of family caregiving, I realized I wasn’t alone. I never knew caregivers have the highest unemployment issues due to their sacrifice, higher depression, and even suicide. How can this be? It’s the ultimate nice guys finish last scenario.

Is it in some cases that some family members don’t have the skills or have a job that gets in the way? I’m sure you hear a lot of that.

Look, I could accept poor caregiving. Heck, with my Dad, I learned by doing, observing, and researching, but lack of caregiving effort or the thought that family members, specifically siblings, thinking it’s not their role is unacceptable to me. It’s not only a role but a duty and that is the goal of my mission. I understand. Life happens. Kids have school. The boss works you to the bone. It’s about making sacrifices to those who sacrificed for you their entire life. Matching skillsets is important but there are other ways. My parents were thrilled when I occasionally gave them a gift card for Boston Market, took a half day off to drive them to a casino or fixed their computer. If you have means and there are needed car repairs and just can’t hand hold as much, we’ll, take care of the bill. It’s the little things that really go a long way.

I want to add, I’m not asking anyone to play doctor. The misperception is that caregiving is a chore. To the contrary, It’s one of the most fulfilling things a human being can do. With the stories that pour in, I’m realizing I might be stretching it when I say human being because I’m not sure if some deadbeats qualify as one.

What is the goal you are trying to achieve with DSS? How will you know you’ve achieved it?

Let it be clear, I don’t want to nor qualify to be the poster child for massive change in how we define caregiving. My goal however, is to move the needle. Like the first person in the baton race, after some solid awareness and buzz, I’d like to pass it on to others more qualified than me after we’ve made a dent in the awareness level that a problem exists.

To your question, my goal is very simple; raise awareness that caregiving is a fulfilling duty. Any definition of caregiving will say ‘one who provides for another’. I want to raise the bar to that word ‘provides’. Two, I want to encourage families to take a step back and redefine or at least move the needed as to what a family really is. I love the Moai approach. Anyone can google it. It’s everyone in the family playing a role and helping each other out. It’s not a chore and should be a required role for kids of elderly parents, just like our parents took care of us. Third, we need our system to recognize that a child’s neglect to their parents is a breach of their duty rather than some relative or Judge saying ‘every family has one’. 

That’s a lot to absorb. Is there a simple step one can take with family?

Sure. How about holidays. Rather than make the appearance, gorge on turkey, argue about politics and then head to the TV to watch football, how about starting a conversation of what is going on in each other’s lives with the focus on how each person at the table can help them. How beautiful is that? That’s what Moai is all about.

With that said, you talked regarding the frustrations about the legal system and how they address deadbeat siblings. It was one of your more passionate parts of the talk. Tell us more about the current system and what you’d like to see changed?

Just for the system to recognize that deadbeat siblings need to pay for failure to make reasonable contributions in the caregiving of their parents. I talked about deadbeat dad’s having wage garnishment and in some examples being thrown in jail for failure to care for their child. These rules are tough and they should be but why don’t they apply to our elderly population? Aren’t they human beings too? The very same that raised us, cared for us and in their relatively brief time of need, its deemed ok to abandon them. I call bullshit. Some newspapers publish deadbeat dad’s pictures in the paper and on TV news. You start doing this with deadbeat siblings and you watch how fast they start showing up to mow the front lawn.

You made my assistant cry when you described your Dad’s treatment and final days.

Aww. I’m not sure if I should apologize for something I was trying to achieve from the group. Hugs for all. That was a poignant moment in caregiving because it’s something that a son or daughter would never have experienced if they didn’t raise the caregiving bar.

My assistant Kayla has a question for you. 

Michael, my favorite part of your talk was how you described your Dad putting his hand on yours as you wheeled him into chemotherapy. It was so touching. Is this part of caregiving that is most overlooked?

Actually, it was when I was wheeling him into the chemo center and random doctor visits. Before the actual treatment, we would stop for bloodwork on one floor, consult in another wing, etc. While in the wheelchair, he would reach back and put his hand on my hand that was on the wheelchair bars. It was his subtle way of expressing his appreciation of being there, going out of my way, and maybe a hint of him being scared. It’s more powerful than words. That is a memory that I’ll cherish forever. I knew I was in the right place. It’s what caregiving, at least what the definition of caregiving should be all about. I’m disgusted when I hear siblings say ‘just get him an Uber’. Newsflash, Uber drivers don’t hold Dad’s hand while he’s scared. It’s one example why I’m full-tank fueled to be on this mission.

After the session, our interview was delayed because several attendees created a side session outside the main hall. Was everything ok?

People came up to me telling me they were touched, how they can get involved, and even asking how I am coping. It felt like a pop-up mini counseling session. I’m blessed that I touched them but all I could think is all the others that weren’t there that need help and were affected by DSS. We need to take those tears and create rainbows. Wow… can’t believe that just came out of me.

You mentioned about an organization you were involved with. Want to tell us more about it?

Thank you. I’m trying to establish a charitable fund that helps families going thru caregiving challenges during a terminal illness, address the deadbeat sibling syndrome saga like we discussed and help raise the bar on the definition of caregiving. I must tell you, creating a charity is hard work and difficult to get completed. It’s like a business with lots of tax qualifications and the like. I understand the compliance part, especially when asking others for contributions but it may be more beneficial to partner with groups like this or similar organizations that already have a footing. It’s somewhat disheartening that setting up a tax-free charity that helps people is ten times harder than setting up a business LLC. My insistence that it be set up to accept international funds is a big hurdle too. The lawyers were supposed to be helping change the legal views of caregiving and DSS, not filing paperwork to set up charities. I take it all in stride and I’m learning a lot during this journey.

What do you think is the best way people can help your mission? Is it fundraising?

There will be a time for that I’m sure but spreading the word about these deadbeats and the goals I mentioned is a good start. Let them know, let social media know, girlfriends, employers, whoever. It’s like those John’s getting caught with a prostitute. They’ll do anything to avoid getting their reputation destroyed.  Exposure of these deadbeats, just like deadbeat dad’s, is the biggest small step one can make. Changing the court’s views about caregiving duty is a big mountain and will take funds but Iets focus first on nudging the needle.

Is there anything else you would do differently if you had to do this again? 

(laughing), Yes. I would have stayed at Wynn. Seriously, I should have been more up front during the caregiving to call out the deadbeat. You’re like, do I really want to cause family problems at a time when we need to focus on Dad? That’s the last thing we need. Years before, I took the initiative to have family conversations when the folks were relatively healthy. It was a tough sell since all was well. I started every meeting off with defining what everyone’s roles are. I never got real answers and during the mayhem, there was multiple hands in the cookie jars and a pair of alligator hands that did shit. I should have locked the door until we had our roles down.

What’s next in your plans to address this issue you are obviously so passionate about?

Thanks to groups like this, my mission is getting traction. At minimum, I hear more and more stories of family strife. Covid isn’t helping the cause, but I’ll continue to talk to venues like this and take the presentations online. We’ll start virtually overseas in the Philippines next month and get the kinks out and improve the message delivery and talking points. I might add, this is a global problem so it’s fitting we talk about this on a global level. The Philippines has a culture of caring like no other. I was so welcomed there so I wanted to give them their thanks first. If all goes as planned, we’ll kick off the U.S. presentations in Pennsylvania 1st week of December.

Is there somewhere people can go to share their story or reach out to you?

Thank you again. Anyone looking for more information and hear hundreds of family’s stories about family caregiving hell and deadbeat sibling syndrome can go to michaeltoma.org.  It’s not a charity page. More like a blog and a forum to tell your story, gather names of those who want to help and to schedule speaking appearances in their city.

 

Thank you Michael and good luck on your mission.

My pleasure. I’m blessed to be here.