Listen to the audio version of this post here.
Starting fresh
It’s been a minute since you found me in your inbox, hasn’t it? You may know that I’ve been very much occupied caring for my husband, Frank, and wrapping things up after his death in November.
The question confronting me now is, “What’s next?” And that’s where you come in.
Even as a full-time caregiver, I was doing a bit of part-time coaching with clients who wanted to be better at speaking and networking, and were willing to give me some grace if I needed to interrupt our work to tend to Frank.
Speaking? That’s been off the table since I had to call a friend to fill in for a gig back in June. I was headed to the ER—again!—instead of Zooming into a meeting to coach jobseekers about framing their talents and skills for their interviews. I stopped scheduling speaking engagements after that.
Well, the New Year is a perfect time to relaunch, isn’t it?
You may even be with me in starting a new venture, tweaking the work you’ve been doing, or shifting your focus to a new category of clients or customers.
I’ve been speaking about communication for a very long time. It makes sense to share the expertise I developed through years on the radio with businesspeople who can use a magnetic message, delivered with some pizzazz. I continue to be fascinated by the many ways we get our message across (or fail to). And by the possibilities for mediocre messengers to become stellar speakers—I love setting that shift in motion.
So yes, I’m still at your service if you’re looking for a program or individual coaching to enhance communication skills.
I’m also thinking of doing something entirely new.
It seems that my recent experience could benefit others who are or will be in the same boat, if I can capture it in a talk or two. Of course, there are already books and websites and yes, speeches, about taking care of an ailing loved one. What makes me think anyone needs to hear from me on the subject?
Much of what I’ve come across assumes … and advises … a level of self-sacrifice, cheerfulness, and a generosity of spirit that we may not feel every minute of every day. You’re supposed to be some sort of an angel! Me? Some days I found myself fresh out of haloes.
So, I’m thinking along the lines of defending the cranky caregiver. Which could mean permission to feel what you feel, whatever it is, as you help your loved one get to the commode. Again.
The challenge is this. Although many of us, as we age, will find ourselves giving … or, God forbid! receiving … that kind of care, it’s not something we relish thinking about. I see you there, with your fingers in your ears, chanting nyah, nyah, nyah to drown out my voice.
So, if none of us want to even think about the indignities of aging and getting infirm, or taking care of someone who is, who would want me to come in and talk to them about that very thing? Hmmm. That could be an obstacle on the path to a calendar full of high-paid speaking engagements.
Maybe a different audience?
It might be that I could give health care professionals some insight into how they could help their patients by helping the patient’s family. You might guess I’m pretty assertive about asking questions and gathering information … and I still sometimes found myself bewildered by Frank’s situation and his needs and the cast of characters involved in his care.
Could those nurses and doctors and social workers use some perspective from me? Yes. Do they want that perspective? Who knows?
This is where you come in.
What feedback can you share about your own experience taking care of a loved one or your level of interest in hearing about mine?
If you’re in health care, would you and your colleagues be remotely interested in what someone like me has to say?
And yes, it’s fair to reply, “Forget it, Catherine. There’s just no audience for that.”
Whatever you have to say, I’m looking forward to seeing your comment here.
Also, thank you.
I’m glad to be writing again and eager to be speaking again. I appreciate the coaching clients who stuck with me through this difficult time and I’m ready for more.
Talk to you soon …
It’s good to see you back, Catherine. I have no useful feedback, but your ideas sound really good.
I hope the new year treats you well.
Thanks, Diane. It’s good to be back! For a while there I just couldn’t focus on business, speaking, the quest for clients … all of it felt overwhelming. You know I love my work, and it feels like I still have something to offer. Now I need to find the people who want it!
This topic is very similar to convincing people to prepare for retirement, as I know too well. And people only want to know about the good happy things in their future. Caregiving and being cared for does not fall into that category.
HOWEVER, if you can wrap it in humor of some kind, it would be more acceptable. It is a reach and right now you are not exactly in the ‘some day I will laugh about this’ phase. It has been almost 2 years for me and finally I have begun to chuckle about trying to hold up a 370 pound man who had lost all strength in his legs thinking it was possible. (It took 3 firemen to get him off the floor.) I would encourage you to gather tales from the front, humorous and absurd , as the basis for your talks. Fifty-year-old people would make the best audience. They have become aware of their risks and limitations at that age. Empowering them can also make a difference. Didn’t you wish you had spent more time in the gym in previous years while caring for Frank?
You know all about the reluctance to hear what we don’t really want to think about, Kristina. And yes, that’s an obstacle to doing anything with my caregiving experience.
The truth is, I’m past the “someday I’ll laugh about this” phase and well into the “already laughing” stage. For sure, that’s part of what would make this subject palatable to people who aren’t eager to think about frailty–their own or their partner’s.
Catherine, I am always interested in what you have to say. I appreciate your straight forward and honest thoughts, always made even more clear by the connections you make or the framework you provide. As someone who just moved my 83-year-old inlaws across the country to Chicago so we could help them, I’d be interested in your perspective, and I bet my mother-in-law, who has begun to take on the bulk of daily living tasks for her husband would also be interested as well.
Help with becoming a better advocate for a loved one would also be helpful.
I agree with Kristina that 50-60 year olds will be interested – we are caring for our parents which brings the challenges into focus. It is definitely a time of reflection on how we might want to take precautions that help us in the future.
You may have your hands full with in-law care, Megan. And your MIL is in for quite an experience. I hope things go smoothly for them and for you. Being an intentional advocate is so important and just being present is part of that. When Frank was in the hospital and the rehab facility, I was there every day. For hours. This put a crimp in my life and certainly my business. I’m quite confident it also meant he got better care. You know what they say about the squeaky wheel. You also know I squeak.
In terms of precautions, I was so grateful Frank and I had set up Power of Attorney and clarified our end-of-life wishes. It had been like pushing a rope getting him to talk about all that. My sunny, optimistic Sweetie was loathe to discuss anything unpleasant. And, when the time came, I was so grateful we had things in place and I could bring copies of documents to the hospital. I’d encourage you 50-60 year olds to take care of that if you haven’t already.
Thank you for your honesty, Catherine and glad you are back! Frank was SO lucky to have you!
One thing I would have appreciated as I managed end of life care for my father with dementia was what the heck is hospice? Collecting and sharing some tales from the front… in our case he did not receive the frequency of visits promised, and 24 hours before he died a nurse did not give us a “ heads up” because altho he was declining he was not “ actively dying.” What?? It was unnecessarily confusing because— wait for it— it was a communication failure. I just mention this as fodder for you to think about. Good luck!
Communication is a huge issue here, isn’t it, Paula? I do think many health care professionals could do a better job of it. Yes, they’re stretched thin. And, it doesn’t take much more time to deliver a message that makes sense and reassures someone than to spit out something that creates confusion.
Our hospice experience got off to a rough start, but once Frank had a regular nurse she was wonderful and he looked forward to her weekly visits. I do think hospice care has undergone some changes that may leave people disappointed. We can probably thank the private equity firms buying hospice organizations.
Thanks for sharing your thoughts. Those tales from the front are valuable!
Hello Catherine,
Have been a fan since your radio days…I’ll let people guess how long that’s been! I did not realize all you have gone through recently, but am a huge proponent of taking what we learn and sharing it to help others. I think there is a true need in this area. And to you, congratulations on making it through!
I have had experiences (both wonderful and horrific) in taking care of mother, father, aunt, and friend, the last mentioned of whom had Alzheimer’s on top of other health issues. I would be glad to contribute anecdotes and suggestions. It is a struggle for anyone trying to sort through actual medical issues, hospital and doctor protocols, Medicare, and the prospect of winding up in the hospital yourself from sheer exhaustion.
Thanks for the congratulations, Liz. It does feel like an accomplishment to have survived the caregiving months with my sense of humor and self-compassion mostly intact. I can imagine you had a range of experiences as you supporter family members and friends through illness. And yes, I’d be grateful for your suggestions.
Hi Catherine,
First of all, I’m very sorry for your loss and I’m happy that you’re coming to the point of thinking about what’s next and how you might derive some sort of good from a very difficult experience. My daughter is an RN case manager in a program geared toward 55+ participants. The goal of the program is to keep folks happy in their own homes, at what they themselves desire as a level of health, for as long as possible. That said, she and the rest of the team deal with family members a great deal. I’ll pass this post along to my daughter for her thoughts and will reply back if there is something to be gained from her perspective.
I’d agree with the post above that humor will be helpful, but a gentle and gracious humor 🙂 Nerves are frayed, hearts are cracking apart, and a quiet smile with a verbal ‘hug’ might be the best medicine ever!
Thanks, Michelle. The interaction between professionals and family members fascinates me. Frank’s hospice nurse and CNA were a huge help; that’s partly because we made it easy for them. Both of them told me how much they liked coming to our home. They dealt with some difficult people, and we weren’t difficult.
That said, you know me. And you know my humor isn’t always gentle and gracious. So I appreciate your cautionary note.
So very sorry for your loss. You have a wonderful way of relating to people, both individually and in groups. I have no doubt that you’d find an audience who can speak about giving and receiving care. Some places that occur to me are senior living facilities like Mather, as well as active adult communities. Wishing you all the best as you navigate this new terrain.
Your good wishes are welcome, Elizabeth, along with your suggestion about active adult communities. I’m not sure their residents want to hear how quickly a person can go from “active” to “needs-a-wheelchair-to-get-around.” It’s a message worth considering though, for all of us.
Catherine – I so enjoyed the time we spent together recently and look forward to doing it again. I have three suggestions for people to connect with regarding your new venture. You probably already know Joy Schaefer and should definitely reach out to her. You should also connect with Heather Lantry with Right at Home (773.775.4677). Heather might remember me from a Chamber event and the fact that she won a book at a raffle that I have yet to get to her. The third is Karen Daugerdis, who is a real estate broker who works with clients who are downsizing. She is also with Skokie Chamber.
Thanks for the suggestions, Erica. Yes, all three of them could be valuable resources. And maybe I even have something to offer in return?
Hi Catherine,
I am so sorry for your loss. I don’t have a lot of knowledge in this area. I did care for my dad in the last few of months of his life but not in the way that you’re talking about. It was more mental care than physical.
But speaking to healthcare workers seems like a very good idea. And I agree with one of the previous comments about humor being a necessary approach.
I’m also at the stage of preparing for retirement. I am recently divorced with no close family. My concerns are not so much about my mental health but the unknown things. Physical health, limitations in mobility, financial health, housing, all the unpredictables that come with aging. I realize you’re not asking about that but it also seems like a good topic area to explore.
The issues you raise are a huge topic to explore, Cindy, and I’m right there with you. Now that I’m on my own I’m considering the same questions about future health, mobility, housing … all of it. I’ve seen firsthand how quickly a person can go from relatively healthy to seriously sick. I want to lay the groundwork now in case that kind of thing happens to me.
Catherine, I am so sorry for your loss. I think you would be a wonderful voice in the caregiver world. As someone who is working in healthcare but also a caregiver in my home life I look forward to your next endeavor!
Thanks, Mary. Maybe we could have a conversation about this sometime. I’m curious about how a person balances caregiving at home with work–in healthcare or any other field. I all but stopped working when I was caring for Frank, and I often thought how lucky we were that pension payments could keep us afloat in the absence of speaker fees. I’m impressed that you’re making it work.
Catherine,
Last summer, I began training to become an end-of-life doula or death doula – a nonmedical person who helps individuals prepare for and navigate through terminal illness/end-of-life issues. There is a growing awareness that we need a huge culture shift towards end-of-life and death, and an increasing number of people in the US, Canada, and worldwide are talking about and working towards making this happen.
Hospice and medical organizations fall short in so many ways; their resources and time available to spend with and educate families is limited. Caretakers and loved ones often do not get the help or education that they need. Dying individuals are not informed of their choices. And as you and others have pointed out, so many people don’t want to think about or talk about death – and yet, from the time we are born, death is the one sure thing we will encounter.
End-of-life doulas are often at the forefront of those discussions, or in the midst of them. We are non-medical professionals who help dying individuals and their families navigate through terminal illness and end-of-life. Many of us volunteer in our communities and also try to find ways to support ourselves while we do this vital work. The National End of Life Doula Alliance – NEDAalliance.org – is working hard to elevate the end-of-life doula profession, and is now working with the National Hospice and Palliative Care profession to move the field forward. There is so much work to be done.
There is also a growing death positive movement, inviting people to start talking about their end of life choices long before they need to. Death Cafes, the Death Deck, doula and grief podcasts, TEDx talks are just a few resources. There are whole conferences built around this topic, moving the conversation away from hospitals and funeral homes into a much wider circle and community. The more we talk about death and end-of-life, the grieving process, the choices most people don’t know they have … the more we can begin to change things.
Over the last few months, I have come across a few people who use comedy to address this topic. More voices are certainly needed, especially when humor can be intermingled with reminders on what is truly important in life, and what we can do ahead of time to prepare ourselves and our loved ones for the inevitability of death. I am so thrilled you want to add your voice to the mix. The more ways we can reach people, the more we can educate.
I have just recently launched my website and received my NEDA Proficiency Badge, and I am looking forward to using the site as a platform to begin that education – both in general, and in terms of what resources are available in the community where Iive. I would be happy to have a Zoom conversation with you, share with you what I have learned, suggest connections, and discuss where I have seen needs for help in this area.
Yes, Dawn, let’s talk! I’m so interested in what you’re up to. The Tribune ran a piece about death doulas this past summer–it was fascinating.
You’re right about the professionals falling short. We had some great experiences with health care professionals, for sure. And we had some that could have been a lot better. My impression is that hospice organizations are being snapped up (and pared down) by private equity firms, much as funeral homes and nursing homes have been. That doesn’t bode well for patient care or for family interactions.
Which points to the need for people like you, doesn’t it? I look forward to learning more about your work, Dawn.
Catherine, 1st- My sincerest condolences for the loss of your husband. Social Media allowed me to watch your lives together over the past few years. I truly loved watching the [colorful] joy of you two popping through the static images. I am now amazed by your outreach here with courage, openness, and engagement during a time of grieving.
Responding to your inquiry about career direction. Having followed you for a long time, my feedback recognizes your gift to communicate to a broad base of people, through writing and speaking on a wide range of topics.
In this transitional period, it is healthy to assess what your future will include. End-of-life care and counsel is a natural fit after your recent personal experience. Your life’s path will transform into sage-like wisdom for all you do. How do you want to mix that life experience with your career gifts in communication? One concept that embraces your recent life, includes the ‘transitions’ in life.
Decades ago, I read a book called Passages, by Gail Sheehy, which identifies life stages per decade. I was a young adult and could not imagine how millions of unique individuals have similar life stages. The book was life before I lived it.
Now as a single professional with 3 grandchildren, I too examine -‘transitions’ or passages in this life stage. Living alone has challenges that can grow in time. Sheehy’s later work is ‘Passages in Caregiving’ and perhaps is an example of your life.
A focus on the end-of-life journey certainly is a qualified direction for you. The broader topic is how we adapt to life transitions in the second half of our lives, is also a related area, suited for your life stage. My guess is your career/ personal focus will evolve as time and grace reveal a new future. Bravo for reaching out for feedback.
Warmest regards DEB
Thank you, Deb. Yes, Frank and I were a fixture on Facebook for a long time. It’s odd to be posting photos now that don’t include him. And, it’s important to me that life doesn’t stop because I’m on my own now and missing my Sweetie.
I’ve been so happy with the feedback here; I’m more optimistic than I might have been about the possibilities for speaking about my experience with Frank as he approached death. I was fortunate to be with him, holding his hand, at the end. I’m so grateful for that. And I do think others might glean something valuable from our experience, if I can frame it well.
Like you, I’m looking at the challenges of living alone and anticipating that those will grow. You’re right, there might be something for me in that area, too. Thank you for your thoughtful response, Deb. I appreciate you.
Hi Catherine,
I think your experience would be very important for the healthcare/home-care organizations who touched you/Frank during the past year to hear about!
Most hospitals and good-sized healthcare organizations now have and leverage (for quality improvement) Patient and Family Advisory Councils or Patient/Family Partners. In our pediatric autism services program we have a council of parents of autistic pediatric patients who we partner with for improvement of the patient/family experience, and redesign of care delivery. Here’s info about how my organization uses these councils: https://kppfcc.org/about
Also, a few national organizations that promote this :
https://www.ipfcc.org/services/patient-and-family-advisors.html
https://theberylinstitute.org/
And I like your idea of being a * public voice* who can speak to this both to healthcare providers and maybe even to families/patients about what to expect and how to advocate, depending on your interests? Keeping these experience and ideas in the forefront could be helpful for promoting better healthcare policy!
I also like Deb’s ideas!
Interesting, Jennifer. I hadn’t even thought about healthcare companies as a potential audience. Yes, they send ridiculously long feedback requests, but I always assume that’s just for show. I’ll check into the organizations you mentioned, and see what they do in terms of conferences and events. Those are possibilities for me.
I’ve signed up for my NSA chapter’s Speakers Academy. It’s more focused on the business of speaking than the practice. And I’m hoping that will help me relaunch with some new talks to offer.
Also, I miss Frank. And working will be good for me.
Oh, Catherine! I’m so sorry to hear about this latest chapter in your saga with Frank’s health. I was out of touch for too long with you and I knew it would eventually end here. But still, I was saddened when your newsletter hit my inbox.
First, I encourage you whole-heartedly to share your experience with others. As others have mentioned above, EVERYONE is going to be on one side of this equation — the caregiver or the one receiving the care. We ALL have important decisions to make (wills, POAs, burial instructions) and we need someone to gently, humorously nudge us onward to get that stuff taken care of NOW. Who better than YOU?
If you worry that no one wants to hear it OR that others are already out there covering this ground — I can only speak from my own experience. When I had breast cancer last year and opened my big trap about it (the fear, the surgery, the radiation, the medication and side effects), I found that people were dying to talk about it/hear about it/get advice. All of these topics that our parents never talked about — our generation WANTS to talk about but isn’t sure how.
In addition to all the fine organizations people have mentioned above, I would add AARP. (If I’m not mistaken, their HQ is out in Rosemont cause I interviewed with them once years ago). They must offer seminars, webinars, etc. Also, if you can get connected to an EAP (Employee Assistance Program) — they also offer seminars on these topics for employees. You might find your way to an EAP (there’s a whole network of the) thru any Human Resources people you know. On a smaller scale, I have to assume that churches and synagogues are trying to minister to their congregations on these topics.
BTW — I’m available to chat any time you want to brainstorm, laugh, cry, whatever. I hope you’re taking care of yourself…
Your perspective is so valuable, Patricia … that people want to talk about these issues but don’t know how. I may have been misreading uncertainty as reluctance.
I will check out AARP again, as you suggest. I went to their site in search of some kind of online caregiver support group and got directions to go somewhere else. I was surprised they didn’t offer that, but maybe they see themselves more as a public policy/lobbying organization than one that provides services. I didn’t dig that far though, so I’ll give it another shot. And EAPs are a great idea.
Yes, to brainstorming, laughing, and maybe even crying sometime soon.
Oh, Catherine. I’m sending you love and hugs. You’re still an inspiration, after all you’ve gone through. That’s your gift. I’ll have to noodle on this, but something that comes to mind is those who have to take professional time to care for loved ones and then return to work. How to advocate for ourselves in taking time off; completely disconnect from work, if necessary (a hard one for some); and navigate re-entry. I’ve had clients who’ve had to deal with this, and I’m certain that they could have benefited from your wisdom. This could also be a helpful topic for listeners, as well, if you’d like to join me again. On the flip side, advising colleagues on how to be supportive of those going through this, could also be useful.
You raise an interesting issue, Emily. I’m not sure I’m the right person to address it though. I can’t tell you how many times I said, “I’m so lucky I don’t have a full-time job!” As a freelancer, I could put work on hold to care for Frank. Although that certainly came at a cost, I can relaunch my speaking work as I’m doing now. It’s a whole different prospect for someone who has to ask for leave or out-and-out quit a corporate job.
As for your podcast, I’m happy to talk with you about the emotional issues, and the practical aspects of caregiving, if you can supply the HR expertise to give your listeners a worthwhile experience.
Dear Cathrine,
I too, am so very sorry for your loss. I could tell by your Facebook posts over the years how very much in love you were! I am sure he was an amazing and very special person. Your pain and difficulty dealing with the health care system, the expenses, and all the emotions that go along with caregiving and loss are felt by so many of us now. We don’t know what to do and who to turn to. We also often feel alone and ridden with guilt.
In order to do my little part towards contributing to “changing “ the world, I am giving monthly free panel discussions around topics that the 55+ community would find educational and helpful. In my opinion, we need to speak to the community. To everyday folks who are going to get smacked in the face by a crisis.
I would love to have you as a guest and I am sure the audience would benefit greatly from heating your story. I’d love to connect.
“Smacked in the face by a crisis” sums it up nicely, Betsy. Frank slipped on ice, fell into the neighbors’ yard, broke his arm. And the next thing we knew, he had cancer. Turned out, that’s why his humerus snapped the way it did. That launched an eight-month journey through two hospitals, a rehab center, and four months in home hospice care. Were we expecting that when he walked out of the house on a Sunday morning in March? Certainly not. And yet, there we were.
That’s how these experiences often play out, isn’t it?
I’d be delighted to be your guest, if you’ll stop calling your part “little.” You might remember this, about that.
Looking forward to it, Betsy.