I've been meaning to write this post for quite some time. And I keep starting it and then saving it for later. If I was actually really smart, I would have posted it on Valentine's Day...or maybe wait until our anniversary...and then it could double as a gift.
But why not now?! And based upon my own "life's too short, tell people how you feel" mantra, I shouldn't delay. And since he only occasionally keeps up with the blog (reading it is kind of like having flashbacks for those of us in the trenches), he will probably never see this anyway. And I'm sure if no one ever tells him it exists, we could start a betting pool to see how long it would take him to read it...
Dear Keith,
We have been together forever. And then some. There are very few memories I have that don't include you. We have weathered some major storms in our lifetime...more storms than two people should have to face. Each time we plowed through hoping to simply get out the other side with minimal damage. But, to be honest, I think each trauma left it's mark on both of us.
It is no secret that the past few years (pre-cancer) we were not friends. It might even be safe to say that we didn't like each other very much. I don't think anyone in our family was happy. One stressor too many had just pushed me into a place where I didn't care any more. And now that I can look back on it, I am so monumentally sorry for those shitty years. I'd give the world for a do-over.
Like they say, be careful what you wish for. Because now I get the do-over, but I had to go through hell to get it.
No one knows what it was like for me these past 20+ months. But, if anyone comes close, you sure do. You've been there in the trenches every step of the way.
I'm sorry:
...for all the times that people asked, "How's Keith doing?" and I had to say that I didn't know. I'm sorry if it sounded like I didn't care. But I just didn't have the strength to care about anyone but myself.
...for all the times that you had to hear me say, "I'm done with treatment, and I don't care if that means I'm going to die." There were days when I really didn't care about leaving you and the kids because I was so over the entire process. And I'm sure that makes me a bad person, and you might have even thought I was terrible for thinking it, but you never said so. And you let me rant. And you promised to agree with me (even though I know you really didn't).
...for all the times that I said, "gawd, get out of here, that food smells." But it really did. Who'd have thought trail mix could smell so awful?!
...that I don't have any idea what it was like to be you throughout this ordeal.
...that I will not be a good caregiver if our situations are ever reversed. I am going to suck at it. I've considered running you over with the car instead. You might hear words like, "suck it up," "get over yourself," or "you think this is bad?!" I cannot imagine going through this process again, and I'm not sure that I'll be able to come up with the requisite sympathy. Though I will be able to bring the jokes.
Thank you:
...for running to get crappy McDonald's milkshakes and bland chicken noodle soup at all hours of the day and night because those were the only things that I could eat for days at a time. And for making three different kinds of soup until we found one that worked. And for heating it up until it was just the right temperature. Lord, I sound like Goldilocks...
...for laughing with me throughout the entire process. And at the doctors. And getting yourself put on the "no-fly list" at one of them. (Kidding). Thank you for appreciating my morbid sense of humor. Perhaps it's not the most healthy, (and you do realize that our son has it also, so we might not win the best parents award), but laughter was definitely needed on many an occasion.
...for respecting my wishes to be alone during chemo even though EVERYONE thought that made you a bad person. The looks they gave you...
...for shaving my head. And bringing humor to the situation. And for shaving your head for all those months.
...for finding my Katy Perry wig!
...for telling me you'd do whatever I wanted when it came to treatment options. And for backing me up when I went against medical advice. You had some pretty hard shoes to fill when I needed to find friends to sub for you at various doctor appointments.
...for being there every day. And taking care of me so completely. I will never find all the right words to express how I feel. And I can never say thank you enough.
Please know:
...that I am so grateful that we have the same outlook on life now. And what the future holds. And where we want to be.
...that I intend to live a life that is all about being happy.
...that it is unlikely I will ever go through treatments again. Every day I saw all the old people going through chemo/radiation/both and it made me so monumentally sad that this was how they were spending their last days. Sorry, that is not going to be me.
...that we've both come out the other side of this completely changed. And I think it's a good thing. And I think that means that we get a do-over on life...and love...and us.
Love, Me
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!
Today marks the first in a series of posts that I will be doing about CAREGIVERS. This also serves as a hint to those of you that I asked to guest post (hint, hint, dear hubby, that also means you), to get me your responses ASAP. I've got the first two returned...now I need the rest of you.
First off, "caregiver" is a pretty generic term, and if you think about it, I have had so many people taking care of me and my family over the course of this past year and throughout my diagnosis and treatments. There are the people that have fed us, given me rides to the hospital, taken care of the kids, and helped us out financially. For all of these things I am truly grateful!
However, for the purposes of this series, "caregiver" means the primary person responsible on a day-to-day, round-the-clock basis for taking care of the patient and all of their specific needs. So, in my case, my husband Keith. (At the end of this series, I will be posting my thoughts on how amazing he has been throughout this entire process. But I'm not sure that I can be coherent enough right now to put my thoughts into words).
Let's just say that he's been a rock and exactly what I needed. And sometimes I'm amazed at what I find myself asking him to do. Or rather, not asking him to do, but needing him to do and not wanting to admit it.
When you think of yourself as a pretty self-sufficient person ready to take on the world, and then you find yourself in a position where you cannot even come close to being that person you once were, it is sometimes VERY HARD to admit that you need someone to take care of you. And you might not be the best patient. And you might do stupid things like trying to carry heavy crap across a soccer a field when you shouldn't...or unload boxes and boxes of textbooks at work...or try and stand up long enough to cook dinner. You should see Keith and the kids respond to my follies: Keith just looks at me with that "would you just give me the blankety-blank cooler before you actually do die and I have to carry you across the field too?!" look; cute little girl child hovers around me waiting to prop me up, or pick up everything; and surly teenage boy gives me the huffy teenage eyeroll before saying, "seriously mom, just give me the _______/shut up and put on my sweatshirt/give me the keys, I'm driving."
Next week, I'll be posting the first of my "guest posts" from people that I know who have been caregivers (which, by the way, is a SUCKY job that I'm not sure I'd be good at). Until then, I thought that I'd start with a link to a great article that I read this summer about just this problem: letting a caregiver actually take care of you. It's important to understand that caregivers want to help you and taking care of you is probably the only way that they can feel like they are doing something to help you. It's kind of a give-and-take relationship that you both get something from. Seriously, you have to read it...click here.
And if you've been checking in here often enough, you'll understand immediately why I love this article so much. HILARIOUS! And the scene he describes is almost identical to ones I've had with my family on more than one occasion (minus the cool, international locale).
