By John Razzano via Share Your Caregiving Story
When my wife, Mary, was first diagnosed with appendiceal cancer in September 2014, I went into problem solver mode. This, of course, was only after denial, anger and disbelief. Eventually I got into my problem solver mode and began searching and researching, trying to navigate what was to come. I hope to share some of my experiences with you: what worked, what didn’t work, what to do, what I wish I had done. And if in some small way one of my fellow caregivers can get a tidbit of wisdom, well then mission accomplished!
Finding the right doc: In our case, we were referred to a surgeon by Mary’s GP when an ultrasound taken in the office indicated a ‘cyst’ of some kind. Mary had been having pains in her lower right quadrant, so we thought chronic appendicitis. The first surgeon we saw told us it was probably cancer, and recommended what I now know as HIPEC surgery (MOAS). We were of course shell shocked. We walked in thinking appendicitis and came away hearing cancer and a recommendation for this radical surgery. We thought he was a quack and went elsewhere. Mistake #1. This disease is so rare and so unique that you really need to find the right specialist who understands it. Do your homework and find the right doctor who knows this disease and with whom you are comfortable. The PMP Pals site or other websites/Facebook groups can provide direction when it comes to selecting the right medical professional.
Be the patient advocate: I’m sure I don’t have to tell you this whole process is overwhelming: doctor appointments, scans, lab tests, treatments, pathology reports, surgeries. To me it felt like it took over our lives. But no matter how much you, as the caregiver, feel overwhelmed, think about your loved one who is also in pain, or sick, and worn out and scared, and imagine how overwhelming it is for them. So it is important that you are there at all the doctor visits, listening, asking questions. Take a notebook and pen. Write down what you hear. Have questions prepared in advance. I know walking into that exam room everything went out my head. I started making notes and bringing them with me to be sure I asked the doc the questions I had. Mary was too emotionally overcome to be able to process all the information we heard, so I was her eyes and ears.
The patient is more than the disease: Sometimes I felt like Mary was being treated for the physical condition but the emotional and spiritual element wasn’t always there. Don’t get me wrong, the doctors and nurses were all very compassionate. Our surgeon even prayed with us. But I think what she needed in addition was some psychological counselling to help cope with the physical symptoms, the anxiety and fear and the stresses that are baked into this process. We did get some referrals from our oncologist only
after months of struggling with it on our own. Ask about a therapist or counselor that specializes in cancer patients, and do it early in the process.
You’re head cheerleader: One of the roles I played was looking for the bright side, finding that silver lining. As an accountant Mary always wanted to know the numbers. What was the survival rate based on the staging of the tumor? What were the success rates on different chemo drugs? How did her tumor compare to the statistics? I was also the one to give her encouragement, to tell her to try just one more round of infusions when she was so sick from it. Seeking positive news wherever I could find it. Give comfort and hope.
Chief Paperwork Officer: Yep, that’s a role we get as caregivers too. The amount of paper coming to the house was staggering. Hospital bills, doctors bills, pharmacy bills, insurance letters, lab results. The list goes on and on. Not to mention all the paperwork you get with every office visit. There is no way your patient/loved one wants to deal with all that on top of everything else they have to deal with. I kept folders (old school) and tried to stay as organized as I could. If you’re not the organized type, try to recruit someone who can take that job on for you. It’s an important task, and one that can easily get pushed to the side. But try to stay on top of it.
Head Nurse: That’s a big role we play. Care and comfort for your loved one. Especially recovering from surgery and during those chemo weeks. Making sure they are taking their meds, keeping them warm, making a cup of chamomile tea, or just sitting with them while they sleep.
Recruit Support: Depending on your desire for privacy, you will want to make a decision together about whether you want to let people know what you and your loved one are going through. We were private people, and social media wasn’t our thing anyway, so we kept our situation to a small circle. Others find that using social media lets them share updates with a chosen circle and offers needed support. Decide what works for you. Certainly asking people to pray, getting friends to run errands so you can stay with your patient, maybe get a meal or two brought over. Most people, who offer help really do want to give it, so don’t be afraid to ask. Every little bit helps.
Transparency: Another important thing to consider is how much and what to discuss with your immediate family. You’ll have to decide what is appropriate and necessary to share with those closest to you. Mary and I decided to minimize the gravity of the situation with our grown sons. Mostly out of parental instinct to ‘protect our young’. In hindsight, that was a mistake. They needed to know the facts and prepare themselves, as well as lend support in full knowledge of the situation. By holding back, we perhaps deprived them of vital time to process what was happening. When the end did come it was more of shock than it may have been had they fully understood her illness. As caregiver, my first concern was for my wife and making her comfortable. However, I see now that my sons needed the truth sooner rather than later. Every family is different, obviously. Ages and maturity levels of family members; their own personal situations will all enter into the calculus of what, when and how to discuss the situation. It is an important factor. As caregiver, don’t forget those others surrounding your loved one too.
Take a breather: We, the caregivers, are so focused on taking care of our loved one, wanting to ease their suffering (or in my case, wishing I could switch places with them), that it is difficult to find the time or
place to think about yourself. It takes a toll on us too. Try to find some moments to recharge, if even for a few minutes. Take a walk around the block. Maybe sit in the backyard for 15 minutes. Pray, meditate, do whatever you need to recharge those batteries, because your loved one is counting on you.
My tour of duty as caregiver lasted about 15 months when, after a valiant battle, Mary succumbed to the disease. I know there are many of you who have been fighting this battle and caring for those who fight, for a long time. And there are others who are just starting on this journey. I am hopeful that you will find some sage advice, good counsel and support in knowing that you have company, and others willing to lend a hand, or an ear. Blessings to all of you.