Who takes care of the caregiver?

Image courtesy of canstockphoto.com/Bialasiewicz

Yesterday was my mom’s birthday and a few weeks back was the anniversary of when she passed away. So, she’s been on my mind lately. In 2004, my mom was diagnosed with pancreatic cancer. It’s a devastating disease with a horrible prognosis. I flew to Boston immediately so I could go with my mom for her first visit to her oncologist. One of the first questions my mom asked was “how long?” The answer: 5–6 months.

Receiving news like this is heartbreaking and different people handle it in different ways. As the patient, my mom was stalwart and accepting right from the very beginning. Ever the pragmatist, she believed she had lived a long life; and if this was the hand that was dealt to her then so be it. She wasn’t angry. She wasn’t depressed. She just accepted it.

As her daughter, I was devastated. I didn’t want to watch my mom suffer through any of it. But as a caretaker, I never wanted her to know how affected I was by it. I promised myself right from the very beginning that no matter what happened, I would not look back on this time with any regret. I would be there for her, I would stand strong, and I would take care of her the best way I could even if I was falling apart inside.

The first 5 months

I was fortunate enough to have a job that allowed me to be flexible with my time. I had been working part time, 20 hours per week. So, rather than work 40 hours across 2 weeks, I worked a normal 40 hour work week. I would work for 2 weeks and then I flew back to Boston for 2 weeks. I figured I would do this until the end … remember, no regrets!

During this time, mom started chemotherapy and she seemed to be on a slow decline. She wasn’t in any pain but she didn’t have a lot of energy.

Also during this time, I think my mom prepared herself mentally for death which, happily, did not come as the doctors had predicted.

Around the 6 month mark, mom was still alive and relatively well. Yes, she had lost some hair and some weight; but all things considered, she was doing pretty well. I remember her asking me at that time, “What now?” I told her, “Well, I guess you get back to living.”, which is exactly what she did. She continued to go to the gym Monday-Friday. She swam laps and continued to teach her water aerobics class. The ladies in her class rallied around her and, honestly, I think they helped to keep her going.

Being a caregiver

When I was back in Boston, I did the things that my mom did around the house which, basically, was everything! From the moment I was up until the time I went to bed, I was always doing something to help out. My friends started calling me Cinderella.

Some interesting things happened when I took on the caregiver role:

1. My mom and I gained a new found respect for one another

   My mom was never one who allowed herself to be pampered and cared for so it was really hard for her to let go and allow others to help. However, because she had less stamina to do things, she relented enough to allow me to help her. And in doing that, she caught a glimpse of the caring and capable adult I had become and I, in turn, saw her life from her viewpoint. In other words, we got to know each other from a different perspective and we gained new respect for one another. We grew closer during this time and that is something for which I will always be grateful.

2. Different people have different reactions to how they deal with cancer

   I don’t know if this is just me, but I found that I could actually categorize how my friends reacted to the news that my mom had cancer.

   • Some friends went out of their way to be there for me and my mom.
   • Some friends expressed their concern and said “If there is anything I can do …”
   • Some friends fell off the face of the earth and stopped communicating with me.

   There were very, very few that fell into that last category; but I must say, those who did surprised the heck out of me. Most people fell into the 2nd category. Precious few fell into the first.

3. It’s really easy to lose yourself when you become a caregiver.

   During this time period, everything revolved around my mom. All else was secondary … even my own health and well being. I gained weight. I didn’t exercise as much. I did the bare bones minimum I had to do to keep my life in order.

How to help a caregiver

If you know someone who is caring for a sick or dying loved one, here are some tips:

• Don’t be afraid to contact the caregiver. Often times, a caregiver can get so wrapped up in what they are doing, they can lose contact with the outside world. A card, an email or a text to let them know you’re thinking about them can help to lift a caregiver’s spirit.

• Don’t just say “if there’s anything I can do …”, do something. It can be as simple as taking the caregiver out for coffee. If there are kids involved, offer to babysit. Make a meal so they don’t have to. Offer to pick up some groceries. The smallest thing that can lighten the load will be greatly appreciated.

• Allow the caregiver to take the lead on what they want to talk about with regards to the person who is sick or dying. It helped me a lot to talk about it and to cry about it. I tried really hard not to cry in front of my mom, but I still needed to release the tears from time to time, especially in the end.

• Don’t hide what is going on in your life because you don’t want to burden the caregiver with your troubles. I had several friends do this and it bummed me out. I might not have been able to step up and do a lot for them but I still cared and still wanted to be there for them.

• Be gentle and patient with a caregiver. They can be stressed, angry, exhausted, or depressed. If offers of help aren’t accepted, be gently persistent over time. Let them know they don’t have to take everything on all by themselves.

The end of the journey

After the six month mark, I continued to travel back to Boston but not as often. I flew back every 6 weeks and stayed for 1 week and I drove mom crazy by calling her every single day when I wasn’t there. At the very end, I stayed back in Boston for the last month and half of her life.

After her diagnosis, mom lived for just over 2 years. She was the poster child for the chemotherapy drug they gave her. The time we were given was truly a gift. It gave me the opportunity to become friends with my mom and not just be her daughter.

I have absolutely no regrets about how I handled myself as a caregiver. I did the best I could and I gave as much as I was capable of giving. And, most importantly, I am ever so grateful for those precious few who took the time to take care of me (Jill, Kris, Rick, Mary, and Rona … I love you guys!)