You know what we don’t talk about enough? Caregivers. Because listen, none of us would be where we are without them. So today, a big shout-out to all of you. I recently interviewed 3 caregivers. Dick, Dara and Dana. Nope, I didn’t choose just people with D names. That part was a coincidence. For full transparency purposes, Dara is my wife. I specifically wanted to know:

  • Your story
  • Your caregiver role
  • Your advice

Here are their stories.

Dick

My wife was diagnosed in 1984 with a squamous cell cancer in her mouth. We thought that everything was clear after the operation. We actually married in 1985 and in 1986 she had another occurrence in a lymph gland. Again everything looked great. And, the next year, she had another occurrence, but this time in her temple and inoperable. We tried Chemo and radiation but without success. Finally we tried immune augmentation in the Bahamas with success but too late. She died in March of 1988.

During that time I was her primary caregiver, and in the last 6 months her only caregiver.

I think that taking care of the physical needs was less challenging than the emotional needs. I would recommend that anyone taking on that role be fully informed of the medical requirements. In our case they required that I give her meds every 2 hours, which wasn’t easy. Also, when her Foley catheter fell out, we panicked because no one had told us what to do.

That time was the most intense and strenuous that I have ever experienced and I treasure it. We promised to laugh our way through it and find joy in every day. We shared the cancer and we beat it because we didn’t let it beat us. When Marty got down and apologized for what was happening, I had her sign a contract. It basically said that if either of us got sick, the other would freely take care of them and that we would concentrate every day on the beauty of the day and our love.

I admit that after she died I was a wreck and I think that’s part of being a caregiver.

My advice to anyone is to be prepared, ask questions and avoid scary surprises. Most importantly, allow this to bring you closer to your loved one than you could have been otherwise and embrace it.

 

Dara

My wife has late stage Ovarian Cancer. She was diagnosed July 29, 2014 and I have been her caregiver ever since, so about 2 ½ years.

When you think of taking care of someone with cancer, you think of physical needs like feeding and helping with clothes and bathroom, etc. Mine is different. I tend to her physical needs by helping with her blood thinner shots, putting on her compression hose, and making meals, although she does cook when she’s feeling well. The biggest part of meeting her physical needs is simply being there – going to all doctor’s appointments, labs, infusions, hospitalizations, etc. It’s a 24/7 on-call thing. And, meeting someone’s physical needs is challenging, for sure, but the emotional toll this takes is in some ways more difficult. It’s a balance of your own needs to try to normalize and figure out how to deal with being sad and mad and scared and numb without making it an additional burden for your loved one. It’s hard to be true to your own emotions while trying to help someone else deal with a shi**y situation. It does get easier with time. At first it was more about what we had to do to get to appointments and medication and such. There was also a very heavy emotional impact at first… the fear (terror) of the unknown, not knowing what to expect and not knowing if this was it, if I was going to lose her. As time went on, the fear lessened because I knew she was not in the middle of dying and that we had treatment options.  She also got used to whatever treatment she was on and began living again. The labs and dr. appts were just something we worked into the schedule. It became routine.

What about my needs? This is hard. I’m built to care-take, mostly emotionally. I also defer to others’ needs. I do it with her and with my kids. The one thing that I would do regardless of anything else going on is sing in my chorus. It feeds me emotionally and spiritually. And that’s the important part, having some kind of outlet and a strong support system of friends and family. They keep me grounded.

My advice to a new caregiver – Try to be calm. It’s not all going to happen in one day. Remember to breathe. You can do it even if you think you can’t. You’ll do things you never dreamed you could do because it’s what’s in front of you. Stay the course, one day at a time, don’t let it take over your life. Try to live as normally as possible and help your loved one do the same. Keep looking ahead.

 

Dana

My wife, Kathryn was diagnosed with Stage 3 Ovarian Cancer in December of 2009 after an urgent care doctor found some bloating in her lower abdominal area when we were there for a completely unrelated issue. The next 2 weeks were a whirlwind. I got her an appointment with my family doctor and from there it was an appointment with Dr. Benigno and surgery on the 15th of Dec. Neither of us knew anything about ovarian cancer. Warning to all… If you have children, do not let them go to the internet. My oldest daughter was flooding me with emails from what she read. It was consuming her.

After the initial shock, reality set in. When we were told that the average life expectancy with this stage of cancer was 3 years, I was in denial. As a matter of fact my wife said I remained in denial the entire time. My wife had always been a very independent person and tried to be the same after the diagnosis. I believe that she wanted things to be as normal as possible, even with going through 72 chemo treatments in two and a half years (an average of two per week). I later learned that it was not the quantity of time I spent with her, but the quality of time spent. Suggestion: If you are not a good cook, learn how or get help. It really meant a lot to my wife that I prepared a good meal for her often. We were extremely active and did not slow down even though I knew several times she did not really feel up to it. We often heard that we will need to prepare for the new normal. Not sure we ever figured that one out.

My wife became very ill in early Nov 2012. This is when the denial is over and you know that all you are doing is trying to keep them comfortable. Being the very special person she was I think she consoled me more than I did her. That is a very important time to respect their privacy, as you will find that all of a sudden everyone wants to help and visit. I had to be pretty stern with my family at those times. THAT IS OK!!!!

After 2 stays in the hospital, she passed away at our home on Dec 22nd 2012. To the end I felt everything. Denial, guilt, how could this happen to someone I love, effects on the rest of the family, learning the needs of my wife during that time. Find a way to be prepared when you know that nothing else can be done.

My advice…  Every situation will be different and will need to be handled in different ways. Educate yourself. Do not be afraid to question or challenge your primary care physician. Discuss options with the one you are caring for. Sometimes what you want may not be what they want. USE THIS EXPERIENCE TO MAKE A DIFFERENCE!

 

 

Thank you to Dick, Dara, and Dana for taking the time to share their stories. Although the situations are all very different, the words of wisdom carry through all the stories – every situation is different, ask questions, be prepared, breathe, be WITH the person, communicate, and take care of yourself. Most importantly, find people you can lean on because it’s exhausting, both emotionally and physically.

Thank you to all of our caregivers. The ones in our homes and in our hearts. You lift us up and make us stronger. You remind us why we fight.

– Ann

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