Another post in my Caregiver's "series" (which may or may not happen every week, but will pop up here occasionally). I asked several of my cancer peeps if they had a caregiver that was willing to respond to some questions. The first one I am going to post here is actually from a long-time friend that, with her mom, was a caregiver to her step-dad.
Thank you so much for sharing your story Jen! I have merely copied and pasted her honest responses. (All of my asides are in parenthesis and italicized).
Who were you the caregiver for? My step-dad.
What was the type of cancer? Glioblastoma Multiforme.
What was the treatment? Craniotomy/tumor resection, oral chemotherapy, radiation, and gamma knife surgery. (It's amazing to me how much caregivers end up learning about the cancer and the treatments...sometimes even more than the patient).
What did day-to-day look like for YOU? Since I wasn't living with my step-dad at the time, my day started with a morning phone call from my mom (the primary caregiver) updating me with his condition, plan for the day, and overnight issues. During the time that he was actively receiving care (chemo & radiation) I would drop my son (2 1/2 years old at the time) off at a friend's or my husband would work from home so I could pick up my parents and drive over to the U for treatment (University of Washington Medical Center...I'm guessing this involved driving over a horrible stretch of freeway in this area and a bridge, based on where I think that they lived at the time. If you are from Seattle, you know that this is NOT a fun drive to do every day under the best of circumstances). My mom isn't comfortable driving on freeways so all appointments/treatments required a driver. A family friend and I organized a driving calendar. (Based on personal experience, this is a terrific idea and SUPER USEFUL for everyone).
What was your "role" as caregiver? (Yelling at doctors, driving to appointments, taking over at home, all of the above?) Driving to appointments, being on point for emergencies (there were several), on Tuesdays/Thursdays, the days my son was at preschool, I would come by their house to visit and help, providing opportunities for my mom to take a break every once in awhile, by being there at the house or being by the phone and calling in every 30 minutes to make sure he was okay on his own.
What was the worst moment for you? There were many, of course, but here are just a few. The first was visiting him after his brain surgery and seeing the confusion and pain on his face and then once we realized that some irreparable harm had been done. He never recovered his speech, motor function, etc. Feeling helpless during times when I couldn't be at the house to help. Each downward spiral of stages such as when we realized he needed a hospital bed in the downstairs office, hiring caregivers to help during the at-home hospice time, getting him a wheelchair, and finally when we saw his own sense of hope start to fade. Of course, the times he spent at the hospice center was heart-wrenching, and finally his passing. (I cannot even imagine what this was like. And I feel that it's a good time to point out that while I loved my caregiver dearly, I really wasn't the person that was checking in to see how he was doing. People would ask me, "How's Keith?" and I would say, "you'll have to ask him." Seriously, people, check in with the caregivers. Theirs is a HARD road and few people remember to see how they're doing).
Was there a good moment for you? I think making the choice to spend Tuesdays/Thursdays at their house was a gift. I had just moved into a new house and my son had started preschool so my "free" time was limited as was my capacity for truly being on the "caregiving front lines." These are memories I treasure, just sitting and visiting with both my mom & step-dad. (So true, Jen. Thank you so much for sharing this. It's sad that cancer makes many of us realize that there are more important things to life than the hustle and bustle of every day that tends to take over. I am so grateful that you had this time...that you took this time).
Did you have to alter your life to be a caregiver? If so, how? Yes, any extra time I had needed to be focused on my parents. Not only did I want to help with logistical issues (driving, schedules, caring) but my mom doesn't have other family to help so she truly carried the weight of the world on her shoulders. As best I could, I tried to help her emotionally by listening and being a sounding board for those times when she cracked from all the pressure. I spent a lot of time on the phone with her and tried to be as present as possible while juggling my own obligations.
What is something you wanted to say to the patient but never did? When my step-dad was clearly nearing the end of his life and was in a coma, we each took turns with him, talking and telling him how he changed our lives and that we loved him and that he could go. I'll never know if he could hear what I said and I know that my love for him was something he felt...but I don't know why everyone always waits until the "end" to truly say all the important things. I guess I wish he knew that all along...he was my true dad. (Amen!! Thanks for that reminder!!)
What is the one (two? three?) thing(s) that people say/said to you that you wished they wouldn't? The whole "he's in a better place" thing, was tough...do they really know that? Or advice about "clinical trials" and going to Mexico to drink goat pee and such. I know they were trying to be helpful but my mom and I spent HOURS researching and were choosing a treatment plan that we felt the best about. This sounds weird too....but sometimes hearing about how "so & so had the same thing and they're cancer free and dancing the tango in Vegas" felt like a lot of pressure and didn't provide the intended hope. (This sounds suspiciously like my "what not to say to a cancer patient" post. Better amend that to include caregivers also).
What did people do for YOU that you appreciated? Helping with my son was HUGE, it meant the world to me that I didn't have to worry about him while we navigated these waters. Also, the family friend that organized the driving calendar since that was a monumental hurdle for us. We also had a friend that made little radiation care bags that had juice boxes and snacks in them...that was great! (See people, sometimes you can help the cancer patient by helping his/her caregiver).
What is one thing that you wish people HAD done for YOU? My parents would have benefited from a "dinner train"...people certainly brought by food, but something more organized would have been great. (Many websites do online sign-ups now for free: CareCalendar, SignUp Genius, etc. make this very easy to do. So offer to be the person that organizes this so the caregiver doesn't have to). For myself, just people checking in with me personally would have been nice...I did have a friend going through the exact same things at the same time (she was just a few months ahead of me) so we spent many hours commiserating! Camaraderie rocks!
What is the best piece of advice you could give someone that has to be a caregiver? Be prepared to go through a whole range of emotions...sadness, anger, guilt...it's not an easy road. You absolutely MUST get out into the "real world" from time to time to realize that there are other things going on besides cancer and hospitals. (There are??) Also, part of your role is an advocate and this can vary depending on the severity and condition of your loved one. For us, my step-dad needed a lot of assistance so we really spent a lot of time researching and learning...you have to be a doctor yourself to truly make sure your loved one is getting what he/she needs. And...remember to hold onto a little bit of yourself so you don't lose you completely.
Again, thank you for being so honest and willing to share Jen. I know that it was a difficult time, and appreciate your insight into how we can all help others through the same situation.
Next time, some thoughts on caregiving from another long-time friend...who happens to be the person that started me on my library career path.
Also, those of you reading this...if you were a caregiver and/or had a caregiver throughout the cancer journey and would like to offer some thoughts, contact me! And if I've already asked for your thoughts (cough, cough, husband, cough, cough), this is your reminder to get me your responses!