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In Sickness and in Health: Interview with a Caregiver

Karen Bagnard interviewing Monica Hubbard

When it was suggested at the Editorial Team meeting that a story about the Pasadena Village Caregivers Group be written, I quickly volunteered. By the time I got home and started thinking about how to approach this article, I realized I was probably not the best person for the task. I’ve never been a caregiver… except, of course, raising my kids and caring for a husband with a cold or the flu. I’ve never had to do this kind of work for a long stretch of time with a less-than-promising “light at the end of the tunnel.” That’s when I decided to enlist the help of Monica Hubbard, a longtime member of the Village, well-known for her weekly e-newsletter, “Wired Women,” and a caregiver to her beloved Tom for over a decade.

Monica was most willing to help. I sent her a list of questions I had formulated. She took time to answer them directly and honestly… and with the most loving compassion. When I read her answers I knew there was no way I could write with any more clarity and wisdom and poetic beauty. I asked if we could make this an interview format. Again, Monica agreed.

I’d like to begin this article with something that Monica shared with me from the AARP Facebook caregiver group page:

“This is really hard.”

It’s a sentence many caregivers think…

but very few say out loud.

Family caregiving is one of those experiences that quietly changes everything about your life — your schedule, your priorities, your energy, your relationships.

And yet, strangely, it’s something we don’t talk about very much.

We talk about loving our parents.

We talk about “being there for family.”

We talk about how important it is to keep people in their homes as they age.

All good things.

But what often goes unspoken is the weight for the caregiver that comes with it.

The long days.

The constant decision-making.

The emotional ups and downs.

The way your own needs slowly move to the bottom of the list.

Many caregivers carry this quietly, assuming they’re the only ones finding it hard.

But you’re not.

Caregiving is meaningful.

It can also be exhausting, complicated, and overwhelming at times.

Both things can be true.

become a caregiver?

A1.   One evening back in 2013 Tom and I attended a political meeting at a home just one block over from our street. We each drove because we were coming from different places. When the meeting ended, Tom headed out and I stopped to talk briefly with someone. When I got home, I expected to see Tom’s car in the driveway, but it wasn’t. When he had still not arrived several minutes later I became alarmed. He finally showed up almost an hour later and when I asked why he was late he said that he had gotten lost. It was at that point that a lot of things converged in my mind – the forgetting things, the off-kilter responses to questions, the increasing tremors in his hands. Following a conversation with our primary care doctor, I took Tom to see a geriatrist and after two appointments, the geriatrist referred Tom to the neurologist who made a formal diagnosis of Parkinson’s.

When I was a young parent and would find myself exhausted taking care of my daughters, I knew even through my exhaustion that each day they were learning and growing and gaining capacity. With Tom, it was just the opposite. He was in a slow decline and steadily losing capacity. After the formal diagnosis I realized that I was now Tom’s caregiver, in addition to being his wife and to paraphrase Ram Dass ( https://www.ramdass.org/) that I was going to be “walking him home.”

Q2.   How did you find resources in the community to help you?

A2.   I’ve never been shy about asking questions, so I started reaching out immediately to family, to our trust attorney Gloria Pitzer, and to friends from all the various compartments of my life, including All Saints Church and Pasadena Village. Other resources I tapped into included The Altadena Senior Center and Pasadena Senior Center; a local geriatric care manager, Antoinette Painter, owner of Advocates for Aging; the Senior Care Network at Huntington Hospital; and two Facebook pages -- AARP Family Caregivers Discussion Group and Medicare Q&A with Boomer Benefits.        

Q3.   How was your life altered after becoming a caregiver?

A3.   My world shrank as I slowly had to give up volunteering and socializing with friends in order to take care of Tom and manage our home, our business affairs, and the additional caregivers. Caregiving was all-consuming. However, I also became more conscious of things that brought a smile to my face or a sense of calm, like the way the moonlight came through my bedroom window, the sound of owls calling to one another at night, the birds waking up so cheerfully in the mornings, the changing colors on the crepe myrtle trees in front of the house, the beauty of slow movements from my classical music favorites.

Q4.   How did you find respite care?

A4.   I put the word out to a small group of friends that I needed help. My next door neighbor referred me to a friend of hers who is a caregiver licensed by the state and who is still with me today.  I also found some temporary help using Care.com. I was able to get him admitted to hospice for palliative care only almost two years before he died. When Tom began requiring more care and ultimately 24/7 care, I engaged an agency, Presidio Home Care, founded by two Altadena brothers. That was possible only because we had taken out long term care insurance when I was 50 and Tom was 65.

Q5.   Where did you find the most emotional support?

A5.   Talking with my daughters. Weekly professional counseling sessions, at first in-person and later on Zoom when Covid arrived. (My psychologist had been my very first babysitter decades earlier when my older daughter was born!) The bi-weekly Pasadena Village Caregiver Support Group that Esther Gillies and I helped get off the ground. Once a month Zoom meetings with childhood friends I’ve had since nursery school. Periodic gatherings of one of my activist groups. And since music had been such an important part of our lives since we were both children, I also splurged on a new sound system so we could be surrounded with music. Poetry and passages from books helped as well.  

Q6.   What would you say to someone who is just embarking on this journey?

A6.   You will find that caregiving involves constant vigilance -- enlisting all five senses at all times – and possibly learning to deflect or redirect your partner’s attention when needed for his/her safety or mental well-being. As you focus on the loved one you are caring for, remember to take care of yourself, too -- a healthy diet, regular exercise, and if possible, making time to meet with friends with whom you can commiserate.

I was counseled to make sure that business/legal matters were taken care of while Tom was still physically able to sign documents and understand what he was doing. This involved having Tom's name removed from bank accounts, trusts, the mortgage, etc. and getting things notarized before there was any official medical diagnosis of his Parkinson's. It also involved putting in place:  1) A POLST form. 2) An Advance Directive including Power of Attorney for Health Care and Power of Attorney for Finance. 3) A will. 4) A rider on our home insurance to cover any possible liability should a caregiver have an accident on the property. You will be glad later that you took care of these matters early on.

As a caregiver you may find that you’re experiencing something called "anticipatory grief" as well as “ambiguous loss.”  It is OK to grieve the loss of your past life and the person your loved one once was. It’s OK to grieve the present reality of your loved one’s cognitive and physical decline and eventual death. And it’s OK to grieve your anticipated future without your loved one. You will find a new kind of closeness. And there will be smiles amidst the heartache.

7.   Please share a little more about how the Pasadena Caregiver Support Group got started.

A7.   There were several early groups: one that was opened up to community members, and run by a Pasadena Village intern; another facilitated by USC and then Wayne April.  Each of the earlier groups slowly lost members.  It was after those earlier groups disbanded that I invited the Pasadena Village caregivers to lunch at my house in January of 2020 to discuss what had happened to all the earlier groups and whether or not we wanted to try starting another group. There was unanimous support to try again. We established some basic ground rules for how we would proceed and were off and running.     

Q8.   What role did the Village Caregivers Group play in the big picture of this journey?

A8.   The Village Caregiver Support Group played a HUGE role. For one thing, I didn't have to explain things to anyone. Everyone was going through similar experiences and we all "got it.” Also, I didn't have to apologize for anything -- forgetting things, getting mixed up, not being my best self. That emotional support was and continues to be invaluable. Also, the resource and information sharing was extremely helpful.

Q9.   What can you say to those of us who have never done this, about being supportive?

A9.   Listen carefully, attentively.  Ask questions. Sometimes we caregivers don't know what we need. We're simply overwhelmed. A text or an email offering various kinds of support helped me. "I'm going to the market this afternoon. May I bring you anything?"  "Joe and I are going out for dinner tonight. May we bring you something?"  "I've got some free time this week. I'd love to come hang out with Tom for a couple of hours so you can take a nap or get out of the house."  "I'm running some errands later today. Can I pick up anything for you?"  "I'm going for a walk and would love to have you join me." 

I appreciated receiving random "thinking of you" notes or emails. I appreciated when friends stumbled across an article or resource they thought might be helpful and sent it to me. And since words like “dust” and “iron” and “cook” were always four-letter words for me, I was eternally grateful for the many meals friends brought.

Q10. Are there ways that the Village can be more supportive to caregivers?

A10. The Village has been extraordinarily supportive in myriad ways and honestly, I can't think of anything more the organization could be doing. 

Q11. What do you think of the new monthly caregivers’ lunch?

A11. Getting together with caregivers over a meal is great!  Because many of us no longer drive at night (and I seem to start running out of energy in the late afternoon), lunches are perfect for me.

Q12. How did you manage to keep your Wired Women e-newsletter going during the years you cared for Tom?

A12. Wired Women was and continues to be a lifeline for me.  During the caregiving years, I seldom had blocks of uninterrupted time -- just a few minutes here and there -- and I was able to use those bits of time to research the programs, activities, jobs, and quotations for each week’s edition. Publishing Wired Women every Sunday helps me stay connected to what's going on outside my four walls and is a way I can give back to the community.

End of interview

This article was a joint effort between Monica and me with Monica being the one with the direct knowledge and the beautiful and truthful answers to my questions. She spent many years caring for Tom and keeping herself cared for at the same time. She did all this while writing Wired Women and surviving the Eaton Fire. Tom died two months after they were able to return to their Altadena home. Through all of this, Monica never stopped. Even through the grief she is feeling now, she has found the strength to tell the truth and the beauty of her caregiver’s role. We hope it will be encouraging to those who are on a similar journey.