I have decided to update tonight because this blog is an avenue I hope other Caregiver's can gain strength and encouragement from. It is a more personal post, which I am not fond of sharing- but I am following my gut. Tonight's post is about being a caregiver and how it has impacted my own health. I want to help any of you who are dealing with this new life of caring for a loved one, with a few tips I learned the hard way. I wished I had joined a support group or had a friend who could have given me tips through the roller coaster ride, so I hope this blog in some way can be that for you.
Meet YOUR needs as a Caregiver, in a balanced way
I remember from the start, friends and family reminding me to take time for myself. I did not listen. When you get married to the love of your life, you become one flesh. To disconnect from a dying husband seemed like an impossibility to me. It wasn't an option. The longest I ever spent away from him was a few days on two occasions, and sometimes a few hrs when it was necessary. One occasion I got sick during a chemo week and so I had to stay home and not with him through the nights in hospital. It was a nightmare.
With my deep love for Phil I thought, why should he be all alone in a cold, lonely hospital bed while I sleep cozy in our bed at home. I did this for two nights when his mom came to town because I literally was going crazy. My lack of sleep began to skew my view of reality, and anger (really sadness) and desperation set it. Kay stayed with him two nights in a row, I stayed home and lied in bed, did as little as possible. I remember Kay saying as she picked me up that she couldn't believe how much work it was to take care of him, and she praised and thanked me for having done it for so long, day after day. That meant SO much to hear.
Another night I had to call mom to pick me up at 4 am. Phil on Prednisone was like Phil as the Hulk. Remember The Hulk's insane eyes, anger, and being on the attack to the point where he couldn't think right? That's what that drug did to him. I always dreaded the first week of chemo because he would take that pill and transform into a human I did not know, and it hurt me. When mom picked me up I just cried all that night in bed. I felt so alone and scared, but I see now - I needed that night for me, a night to despair so that I could regroup and be strong the next day for him. I see now that crying is important during a war, sometimes you just have to let it out.
Me at home on one of my nights off watching movies and painting
It's going to happen to you. You will at some point start to lose your mind because of your unmet needs for a good night's sleep, one single stable day just for yourself that never comes, and the comfort, safety and intimacy of your mate. Those things become a memory that is blurred, and you can't remember what "romantic" ever felt like. THIS is the time and the moment where you need to call in family or a friend and take a day or two off. Go home and cry, grieve what is lost and let yourself feel what you feel because it is real and it needs to be unpacked. This isn't a self-indulgent pity-fest. This is you accepting your reality and dealing with it in a mature and reasonable way.
The hard truth: I should have gone home more nights and let him be uncomfortable so that I could have been more of an emotionally stable caregiver. There is a bittersweet spot that you and your mate have to find that involves the sufferer having to be slightly neglected for a short time (not entirely because the nurses were there) so that you can maintain your sanity for the long haul. You cannot predict how long this stage of your lives will go on. This is your new normal. You must plan for the long haul (to be safe) and be realistic as far as knowing what is possible to take on and what is not. You can't be on 100% every day, year after year. Phil just happened to go into remission within a year of his severe complications. For others it goes on and on (especially older couples). We have to allow ourselves to disconnect as an individual and get what we need in some way at times. This is a KEY element to your ability to stay sane and ultimately efficient as a caregiver to the person you love.
You will feel like you are being heartless and selfish. Even thinking back now I carry the guilt of knowing there were a few days I wasn't by his side and he suffered all alone in that room. But think of where he is now. He is fine! He had a few days that weren't that great but on those days I was rejuvinated in even small ways that reset me for the future struggles.
Me getting my hair done as a pick-me-up
Further, Phil found an amazing depression and anxiety medication just as he started to heal. He is doing so well it is almost nuts. He's now playing hockey, back to work and enjoying it, on his bike, living and participating in his life with a renewed vigor and youth-like energy. I on the other hand, am burnt out, broken and suffering from PTSD and the feeling of having nothing left to give. This has been so deeply hard on my dignity because I have always had depression, which I had dealt with maturely, void of self-pity. I put in an effort to keep a good sense of humor and to never victimize or isolate myself. But now, it is more evident, at it's peak and I feel that I cannot keep up with Phil's new activities and lifestyle because I have nothing left inside of me to join in. It is very hard to admit this with you all, but I am doing it because it needs to be said, and it will encourage someone in the future who will find this article.
I have indeed gotten better since we have been eating right. But depression and PTSD are brain issues that are deeper then diet. This month I am going to look into a different medication then I am on now. I have seen what the right meds have done for Phil. He is a new man. Is that possible for me? I want to think it is. So I am going to take control and not lose hope until I get it right. There are things and ways of thinking that will give you a head start and lighten the load of your post Cancer burnout though. I see that now...
Never lose yourself by loving someone too much. Never give too much that you can never get back. Never neglect your heart and soul to the point where you know you will be permanently damaged. Yes, love with everything you have - but love yourself too - give yourself permission because THIS will make you the best mate and caregiver you could ever be. I have done research on Caregiver Burnout and I definitely am experiencing it. The frustrating thing is that every single day I denied myself any of things I needed, and blocked out how lonely, scared and raw I felt. Worse, I KNEW I would end up this way. Listen to the little voice inside saying, it's time to go for a massage, or it's time to do some shopping therapy, it's time to talk to a friend, etc.
My chair bed, during his week-2 week long chemo treatments
You Can't Prepare, But You Can Control How You Deal With It.
You can't prepare for the traumatic things that will happen during your journey through Cancer with your mate. Every Cancer is different. In my experience there were numerous discussions about Phil's impending death, had in secret with the Drs. You can't prepare for all of the scary things you couldn't imagine happening to a body right in front of your eyes. I couldn't have prepared for the sound of 10 out of 10 pain cries, when the Dr screwed in a long metal tube to chip off a piece of marrow from Phil's hip bone- he was completely awake. I couldn't prepare for the bucket of blood that Drs pumped out of his stomach through a clear tube going down his nose. I remember holding his hand as they pushed that stupid tube down his nostril and I can't forget the anguish in his eyes and how hard he was squeezing my hand in pain. You will have your own moments like that. These are things that shake the core of who you are, who you want to be, who you simply could never be again.
My goal was to keep a brave face for Phil 24/7, so he would never know how bad it had gotten. Even in the ICU while he was hemorrhaging and family flew in because the Dr told me "this was it", I didn't show him or let on that it was that grave. He said later that he actually didn't know it was as bad as it was. Even in my quiet moments, when he would sleep and I would go down to the cafeteria to eat, or even just walk the halls - I could not really cry. Like really cry. In the way I needed to. If I could go back, I would have let myself cry more. I would've been healthier and relieved in a way that would be lighter for Phil to be around.
Convince your mate that everything will be fine, not to worry, and that no matter what the Drs say, NOTHING is set in stone, and it is more likely that they will come out of it in the end. Don't mistake this for treating them like a child or lying to them. This is a decision you have to both make- where you CHOOSE not to be desperate, but instead you CHOOSE to be positive. I am 100% sure this is why Phil didn't give up. I still can't believe that Phil got better. How many times I was told that he would never be okay, and look at him now. This proves my point. NEVER go down the road of this is it, unless there is 100% proof and you must start to plan for the reality of the future.
I remember in the ICU when Phil had barely any blood left, he was white as a ghost lying in his bed with the bright light of day shining through the window onto him. (pic below) He was just bones and freckles. Dad was beside him with a sketch book and pen, and they were planning what to do because he was going to die. They did not cry, none of us did. They were discussing where the paperwork was, what to do with the money we had left in the bank, and how he wanted to have the cheapest funeral possible so no one would be stressed. In that hour I knew what an abyss looked like, while hanging on with 5 fingers to the ledge - dangling and about to drop in. But here is the key point: Right after that horrible discussion we dropped it and as a family began to laugh and keep things light and happy. We prayed A LOT. We prayed for calm hearts. And we were all calm. As you can see in picture here, Dad is reading the daily text with encouraging scriptures which kept us all afloat.
This is what a game face looks like.. Hannah beside me, helping me to laugh. I'm pretty sure that's an egg mcmuffin, pretty much essential on a day like this lol!
From that moment on, I resolved to never let him discuss anything like that again. And we didn't. I made it clear to the staff to take me aside when it came to getting real about the situation. This is one thing I am so happy I did- even though it killed me- I know it helped him fight and to not give up. And now I see how it has payed off! He is doing so well, and he can be back at work supporting me as I struggle with healing myself. Give and take.
What I have to do in my own situation is, embrace the experience me and Phil went through together. It is a struggle to force bad thoughts of mind, but I have done pretty well as Phil has. We rarely discuss Cancer, and if we do we keep it light or joke about it. When something is that heavy, that is the only way to discuss it. However, Phil sometimes forgets what it was like because he is doing so well. I am damaged in a way he isn't. Unfortunately sometimes we have to have a small talk about the reality of what we went through so we can regroup. We are not a normal couple. We have gone through war together. My last tip is to COMMUNICATE.
This is his favorite T Shirt, his dark humour ;)
When a couple goes through something earth-shattering together it can either slowly break them apart or strengthen the bond of love in beautiful ways. Most everyday we do so well and take care of each other, shower one another with love, and spend much time laughing. However, there WILL be bad days when a trigger reminds you of how much the Cancer or sickness has changed you. Some people lose a limb, other's are suddenly bound to a wheelchair, crippling depression, PTSD, etc. We are fortunate to only have to deal with depression. We know Phil's cancer is not the worst we have heard of and we are thankful every single day that he is okay. But changes and traumatic events will kick up the dirt and you will have to relearn what each other needs. You are different people now. Completely. Once you realize that a weight will come off you.
Don't compare yourself now to what you were before Cancer. You will never be that person again. Sorry. But that's the truth. However, you are not a worse person, you are a smarter, wiser, cooler, funnier, awe inspiring new version of yourself now! You have your scars and you will have to have discussions here and there about your new feelings and needs - but this is okay and good. Don't view these as fights. Destructive patterns can arise in your trying to cope in a new way. Talk about them and figure out together a better way. Cuddle, do things together just the two of you. Celebrate love because it is an amazing thing that deserves attention and reassurance. When something is said out of impatience, anger, insecurity - talk about it, but don't remember all the details. Purposefully wipe off those blows from your body and know that some of it is just wild-talk and that your love is just too deep for that stuff to get in between you.
An amazing sketch sent to us by my talented cousin, Harley
You are bigger then bitterness. Work together to always be a safe and peaceful place, where you can both go for comfort from the memories and experiences you have shared and overcome. It is SO important to keep on top of this stuff. Don't let negative energy overreach your marriage. The moment you go to an ugly place together, try your utmost to not be cutting or say things that will scar even further. Sometimes you will have to go there and be painfully real, but always in those situations say all there is to say on each side. Don't leave out the key elements. This is the only way to actually solve a problem and move on completely. Like I said before, you cannot prepare of control how Cancer will effect you, but you can control HOW YOU DEAL WITH IT. As one flesh, you deal with it by communicating with love and honesty.
I thank you all for hearing me out on a particularly hard day. Sharing our struggles and reality with you helps me to remember we are not alone in the post Cancer healing process. Disease or any major negative life change can make or break our marriage. Choose to make it work, and never let outside elements kill your love. Yes, Cancer is an outside element. It is not who you are. We are not victims, we are just imperfect humans doing our best to heal.
In review, we can get through it all in 3 steps:
1- Meet YOUR needs as a Caregiver, in a balanced way
You are only a human, and there's only so much you can give when you are not receiving what you need back. This means you have to take the bull by the horns and take control of how much comfort you allow yourself to enjoy. Once a day, take at least a hour to disconnect by reading a book, going for a walk, writing poetry, or doing a craft you love. Remember who you are and don't let your sanity slip away. When the time is right, have at least 24 hrs of completely alone time, where no one will need anything from you and you can just order a pizza and watch a movie. Book a massage at LEAST once a week, twice would be best. You will miss and need the physical aspect of touch which will be erased from your life if your mate is bedridden. Recognize the healing power of massage and view it as part of your routine.
2- You Can't Prepare, But You Can Control How You Deal With It.
Nothing can prepare you for the horrors of Cancer, but you aren't completely out of control. Allow yourself days or moments to release your stress and pain in a short cry. Pray while you are crying, for the ability to stop when it is the right time. That cry will be a release for you and will stop the pattern of burying pain and ultimately preparing yourself for a long and frustrating breakdown once things get better and you start to rebuild. As a caregiver, take control of your emotions so that you have a brave face no matter what, be that strong person you are with the help of prayer and your positive attitude will rub off on your mate. Don't talk about death, or desperate things. Laugh, keep it light and keep distracted. Borrow or invest in sitcom DVDS, Netflix for comedies and cable for tv to pass the time. Laughter and positivity heal, stress kills.
Since Cancer has come into your lives, you are different people now. It is okay to let go of plans or assumptions of what, where or who we will be in the future. Just get through one day at a time. When nerves, frustrations, impatience and destructive patterns arise realize it's time to sit down and talk it out. Let yourselves cry, and have your say -making sure not to be cutting, even in wild-talk moments. If something hurtful is said and it tries to imprint your memory, embrace each other and comfort, reassure that you are sorry, and let that love wipe away the hurt. Let it go, you don't need to carry more pain. Don't keep score, instead give each other room to figure out your new way of life. You must reinvent who you are as a couple AND as individuals. It is okay to have bad days.
There's a great saying that goes like this: "It is a bad day, not a bad life." Laugh together, reignite the romantic flame, do sweet things for each other. Don't build up Cancer to something it is not. It is just a yucky experience that is in the past. And if you are in the middle of it, it WILL be in the past soon enough. Never despair or believe it will go on forever. As hard as it is to remember, this too shall pass.