He’s the love of my life and he’s very ill

Keeping it REAL Caregiving would like to welcome a special guest essayist to the platform. She would like to remain anonymous but her willingness to share is incredible! I believe she has valuable information and insight that can help others.

She is a wife, mother of three, grandmother to eight and soon to be a great grandmother.

She is also now a caregiver to her husband of more than 50-years. In 2007, he was diagnosed with Idiopathic Pulmonary Fibrosis and Hypersensitivity Pneumonitis (a subset of PF).

Courtesy: Pulmonary Fibrosis Foundation

The couple was told he had three to five years to live, to consider himself terminal, and to get his affairs in order. (Before even leaving the doctor’s office, supplemental oxygen was ordered).

Both were 60 at the time and as you might imagine, the diagnosis was not expected. This is their story…

*This essay has been edited for clarity and brevity*

A grand love

We met at 17 during our senior year of high school. We graduated, were very good friends, flirted a lot while we were both seeing other people, and fell madly in love very suddenly.

We were engaged at 19, married at 20, and three kids and 55 years later – here we are.

Courtesy: Adobe Stock

Career & family

My husband did 22 years in the Air Force, we traveled a lot and we loved every minute of it. I’m what is called an “Air Force Brat” – my dad was in the Air Force and I was born and raised Air Force – so I was happy with the choice of career. He retired from the AF in 1990 and went to work doing the same thing he did in the AF…but in a civilian capacity.

Courtesy: Getty Images/SEBASTIAN KAULITZKI/SCIENCE PHOTO LIBRARY

Disease diagnosis

When my husband was diagnosed in 2007 he was still working at a job he loved with a passion. There has never been any question about what I would do after he was diagnosed, but I knew I needed to get educated on his disease, and also how to be the best caregiver I could be.

So I did what I do best…I started reading everything I could lay my hands on regarding PF.

Doing that helped to calm me and I was able to better focus on the task at hand and what the future might hold…”scientia est potentia” (knowledge is power).

Overcoming obstacles

I won’t say this journey has been easy, but it has made us stronger. In the beginning the hardest part was my husband’s anger and subsequent depression when, after about 18 months, the PF worsened and he had to quit working.

At that point we were together 24/7. We were (and still are) good with that but we had to figure out how to do that in a healthy way – so we didn’t kill each other (LOL).

We had a lot to learn, and eventually, after individual counseling, some couple counseling, some arguments, plenty of crying on both our parts, lots of support from our kids, and figuring out our new life as best we could, we came out on the other side.

I still see a counselor on occasion, I practice mindfulness as best I can, and I try to take each day as it comes. My husband has a mantra he keeps in the forefront of his thought processes :

“I am living WITH pulmonary fibrosis…NOT dying from it.”

And he has done just that…he continued to play golf as long as he could and even got his first hole-in-one while wearing his oxygen. We used to travel by car (he couldn’t fly with oxygen) a couple times a year to visit family – until 2017 when he couldn’t travel anymore because his supplemental oxygen needs became too high.

Biggest Challenge(s)

Tracking all the medications so he doesn’t run out.
Dealing with the medical community as a whole – UGH!
Keeping us as healthy as possible despite Covid.
Dealing with ignorant but usually well-meaning people’s advice and comments.

Lessons learned & advice for others

I’ve learned that I’ve had to manage my frustrations and my expectations – that’s hard to do sometimes and some days are better than others.
Be as flexible as possible in your day-to-day journey, access meditation apps like Calm, and practice mindfulness where you can.
See a counselor as needed and exercise when you can.
Stay as healthy as you can – neglecting your own health will not help your partner/spouse.
Despite the illness make time for romance as much as possible.
Also make time for some “You-time” where possible. It all helps.

Caregiving ups & downs

I love the time we have together – we actually don’t get tired of being together 24/7. Even when it’s just holding hands when watching a favorite TV show – it’s special.

I’m married to a very kind and loving man and, I wouldn’t want to be anywhere else than with him on this journey. I’m a very blessed woman for sure.

I dislike having to takeover stuff he used to do on his own. I think he feels somehow diminished when he has to hand it over to me. He’s never said that but I feel it.

I know I’m capable of doing whatever needs to be done, but we’ve always shared these things and now more of it lands on me – in addition to the stuff have I’ve always done on my own.

Motivations through the journey

I love my husband with a passion that, even after all these years, continues to get stronger, and I know it’s the same for him.

When things have been tough on this journey we hang onto each other more tightly. We’ve attacked this illness as a team and my husband has obviously beat the odds, but the PF has accelerated, caregiving is more difficult, and we know time is short.

I’m scared – my husband is my heart and my whole world – he always has been.

From the entire KIRC family, we extend positive energy, strength and support for this family and their caregiving journey. Thank you for sharing.

*****

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Upcoming event

☕You’re invited to join KIRC this Sunday, March 6, 2022

@ 8:30 AM Pacific – 10:30 AM Central – 11:30 AM Eastern

for our next Coffee Chat & Support Hour!

This reader story reminds us of how important it is to support each other during this journey. KIRC welcomes two special guests:

Kandis Draw, National Illinois Advocate with Ovarian Cancer Research Alliance &

best-selling author and fellow Bulletin Writer, (Chicago Southsider) Charlene Rhinehart, CPA and Chair, Illinois CPA Society Individual Tax Committee.