Interview: Sharon’s Caregiving Journey in Wisconsin

Sharon cares for her husband in Wisconsin with the support of her church community, sons and daughter-in-law, her husband’s former work colleagues, and Trualta. She’s learning to navigate the new “normal,” while missing the life they used to have. Sharon is committed to continuing their trips to national parks, even if it means just driving through to take a picture. In this post she shares her caregiving story, what she’s learned, and even some silver linings. 

Tell us about yourself

I live in Wisconsin, have two grown sons and a daughter-in-law, and have been caring for my husband since May of 2020. Prior to that, for 30 years I worked at the YMCA in all roles. I did grant writing, employee handbooks, budgets, and payroll. I still do IT and recorded phone greetings for the YMCA. I am the voice of the YMCA.

For 13 years I led intergenerational family bike trips for the church. It was active and hard, and everyone got really close. We biked 30 miles a day. We do life together. We don’t just go to church together; we encourage each other and we live out our faith in tangible ways.

I am also a big national park fan and have a dream of visiting all of them.

What is your family dynamic? 

I live with my husband and younger son who is 24 and has special needs. You are a caregiver as a parent. Our other son is 10 minutes away with his wife. We have no extended family nearby. My parents are in Massachusetts.

What led up to your caregiving?

In May of 2020 my husband couldn’t write an email or spell our car name. I thought, “Hmm, that’s weird.” My husband’s diagnosis was metastasized melanoma to the brain.  I didn’t realize I was a caregiver until over a year later. You have this perception that the person will get better and return to normal. A season where you’re firefighting. 

Tell us about your caregiving experience

My husband had two brain surgeries and immunotherapy. He has been on steroids, got big, and couldn’t walk. He kept getting worse even though his PET scans were good.

Who is your support system?

I have a support system from church: a small group and church family. They’ve planted flowers for me. My husband and I went away and they came over and cleaned the house. 

My husband worked for a large financial services company for 38 years. This work community has become more rich since he got sick. We’ve had richer conversations with colleagues. They come to the house and stop by. 

How has Trualta helped you?

No one understands how hard it is to be a caregiver until you are one. Those who are younger and are full-time family caregivers are the most needing of support because their contemporaries have no idea about the load or hard things that caregivers navigate, and cannot relate. Caregivers in this situation can’t share the hurt with contemporaries as they are judged unfairly. 

Trualta’s webinars and articles are also helpful. I have used the webinars mostly because I can multitask with headphones while it plays. Articles require full attention and that is hard with everything else I’m responsible for. 

What was the biggest surprise when you became a caregiver?

The grief and loss. I didn’t know I was feeling grief and loss until I joined a support group and someone gave it a name. 

The other biggest surprise was that I became a caregiver in the time span of seven days and didn’t realize it until a year-and-a-half later when it finally occurred to me my husband would not be returning to his baseline prior to diagnosis.  I would be his caregiver for the foreseeable future. My life was no more. 

What advice would you give others?

Find your tribe. Find gratitude. Feed your faith. Face your giants. Don’t let fear keep you from tackling hard things; leaving hard things undone drains that battery that is already low. 

Best tips?

• Explore the Trualta website.
• Get legal documents in order NOW.
• Anticipate issues and prepare in advance.
• Use medical apps. Log in as your person (your number is their number).
• Try to get care in the same medical network so all medical info. is in the same app and all medical professionals can see other specialist visits, appointments, test results, and notes.
• Find a financial planner for yourself and your person if not in the same household. Ours are priceless.
• Ask for help… even if you get disappointed when they can’t help.
• Find someone “like” your person for them to have a relationship with. It’s amazing the healing that can happen when your person finds “someone like them.”
• Learn Medicare and know your person’s insurance.
• Reach out to a local Area Agency on Aging.

Do you consider yourself a caregiver?

Yes, but it took me over a year-and-a-half to find a name for it and own it versus being a spouse. For that length we were in emergency mode with medical treatment, surviving, modifying the house, finding medical equipment, with the expectation he would get better and return to baseline pre-diagnosis. No one warned us that more than likely he wouldn’t return to baseline. We were diagnosed at the beginning of COVID so everything was disjointed. Support was shut down for over a year or more.

What do caregivers need?

They need to be gentle with themselves and others who are ignorant of their journey.

They need practical things like health insurance, access to fitness/wellness centers for health, respite care, legal resources/guidance, and medical equipment. They need flexibility from employers for those who are able to work, and flexibility for those whose caretaking duties are remote or occasional (like for my son who may be needed to take his dad to treatment when I have a conflict). They need a place to collaborate with other caregivers and learn from them, share stories, and be mentored. 

What has been helping you?

• Support groups
• Financial planners
• Medical teams
• Participating in tests/interviews/trials for Trualta…it is intellectually stimulating, but also helps me process my journey when answering hard questions
• Having something that is intellectually stimulating that is NOT medical or caregiver-related
• Various groups like book clubs, small groups at church, and a leadership class
• Having hobbies or relationships outside of caregiving
• Our church/faith community
• Friends, both local and distant
• Family – all are distant, but help emotionally and practically
• Husband’s former work colleagues/community

What do you miss?

• Health
• Freedom to do what I want when I want
• My partner in parenting, decision making, intimacy, planning
• Being free from the “pain in my chest.” I feel like my eyes have been opened to the pain of life and aging. I am no longer innocent of life’s HARD things. I had almost 50 years of pretty “normal” life. I was pretty naive and ignorant of hard things. I now carry a weight that I can’t get rid of. I recognize those who are still in their “normal” bubble and those who know what it is like outside of that “normal” bubble.

How have you been blessed by your caregiving journey?

I am not brightsiding caregiving but recognizing that there is good to caregiving.  As hard as caregiving has been, my particular journey has also been a blessing. Equal parts. 

A small list of blessings… they are ALL IN PROGRESS…not done!

• I am meeting heroes…other caretakers! THEY ARE AMAZING!
• My faith is growing exponentially. God has shown up again and again.
• We are seeing a side of people who would have NEVER seen otherwise. Kindness, thoughtfulness, caring. Especially from my husband’s former employer and work colleagues.
• We are becoming more gentle, kind, humble and better versions of ourselves.
• We are enjoying the opportunity to be kind to medical heroes and encourage them because we see nurses and doctors so often.
• We are having better conversations.
• We are more intentional with how we spend our time and resources.
• We are learning to live in and enjoy the present, not the past or the future.
• We are focusing on what’s important and trying not to sweat the small stuff.
• My person, who is my husband, is a MUCH better version of himself, for which I am grateful. I’m sure he might say the same about me as well!

I am not brightsiding caregiving but recognizing that there is good to caregiving.  As hard as caregiving has been, my particular journey has also been a blessing. Equal parts.