Episode 51: Holy Crap Caregiving Moments

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We are in the 7 day countdown until another surgery for my husband and I’m going into a higher level of caregiving. I’m wondering if, when all of you have a heads up that something is coming down the road, do you have a way to get ready for it?

There is always a lot of uncertainty when you are a caregiver. Depending on why you are caring for a person you could have a constant level of stress or there may be ups and downs where you have some times calmer than others. For the past few years we’ve been on the roller coaster track and right now we are still coming down that steep hill in the dark  - Space Mountain style. 

My husband is going in for a surgery to fix something that happened from major surgery he had six months ago. His diaphragm on the left side is paralyzed because the nerve that controls it was damaged when he had major surgery to remove cancerous lymph nodes in his chest. Compared to that surgery that required them to open up his chest, this one is minor but still extremely important. He hasn’t been able to bring in a full breath for 6 months. Imagine feeling like you can’t breathe for that long! 

So, in a weird way, this may be a surgery that makes him feel immediately better instead of worse like the multiple ones he’s had in the past. Nonetheless. It still means going to a hospital that is two hours away. So I’ll need to plan on being away from home for a few days. Then there will be the process of getting him home and helping him rest and heal. 

For me that means that caregiving will be more of what I do for about a month. 

My husband has had a cancer surgery almost every year since 2013. So I’ve had a lot of experience with how I need to adjust for these times but that wasn’t always the case. In the beginning we would be told he needed a surgery and I instantly would become extremely stressed out. Now that I’ve been through a lot of those freak out moments I’ve learned that doesn’t really help things. 

So instead I plan for both me and him.

For him there are some distinct phases that I now know I need to plan for. 

Everything starts the day he finds out when he’s scheduled for surgery. I know he’ll have a lot of emotions that will whip through him when he finds out. He is always eager to just get it done. He’s actually looked surgeons dead in the eye and told them that the two people required for that surgery were standing in the room - why not just do it that day? 

I love it! It’s never worked but I love that he tries.

Hopefully, for me, there isn’t a long wait because the waiting kills him.  The week before surgery is the worst because he’ll get into the phase where he just wants to go to bed and wake up the day of surgery. The days get long for him, he has too much time to think and he get’s impatient and anxious at the same time. Then there’s surgery and the hospital stay. He’s never quick to want to leave  but I think that’s because he likes the extra attention and knows that once he leaves he has to work on healing. Next is the phase where he is at home and just working on resting and managing pain. Anesthesia really does a job on him. This is followed by feeling good enough to be awake during the day but not enough to get up and do things. Then feeling good to do a little but doing too much and finding himself back into bed. You know the whole two steps forward one step back deal. Then he usually goes back to work before he feels 100% which makes this final phase last a little longer than it probably should.  

I know this is the way things progress. So now I have a plan for each one and it helps me so much to do this because I can handle the stress and anxiety that I have, no matter what, during a surgery and can prepare for things so I can be there for him more. 

When our loved ones have surgery it’s scary for them. I know my husband worries about me when he has to have surgery. He worries that I won’t take care of myself enough because he knows full well that he needs me to help and be there for him.  

Well… ok, he may feel he can’t do it without me but I’m sure he could if he needed to. I just hope that never happens.

Before I realized this was the natural progression for him for surgeries I found myself very unhappy and overwhelmed because I didn’t adjust for it. I didn’t find a way to ride the wave with him but was constantly trying to keep my head above water. When you resist the changes in your life as a caregiver it makes things much more difficult and life just really starts to suck more for you. It took me years to figure that out! 

When your caregiving is shifting into a phase where you will need to work more at it you have to realize that you have to make room for that in your life and know that this is what is happening, like it or not. If you don’t, it’ll start to wear you down. I used to try to work and do everything I normally do as a wife, mom and employee when my husband had to have treatments or surgeries. Since I didn’t adjust my expectations for myself I made room for it by eliminating the things I did for me. I would throw my self care away to be able to make it through a hard time of caregiving. It’s crazy that I would do that because it’s the one thing that I needed to keep myself going.  

For years I would neglect myself and find that right about the time my husband was feeling better and going back out into the world to work and spend time with people I was exhausted and sometimes angry that I gave every once of myself to help him get to that point. He shifted into being ok and I wasn’t. I was Angry at him for healing and going to work to be around his peers because I didn’t understand what was going on. I was angry because I spent all my energy making sure he was ok but never did what I needed to be ok myself. So in the end I had nothing left and he had a new found energy. We were going in opposite directions. He was riding the wave and I was fighting them just trying not to drown.

Over time I learned how to do things differently.  

When he finds out that he is going to have surgery I instantly start to ask or write down questions to ask the surgeon. Most importantly - how long is the surgery, how many nights in the hospital and how long of a recovery. I take those numbers and multiply them by 2. He’s gone in to surgeries that have lasted double the time they’ve told me and he’s stayed longer in the hospital than expected in the past. So now I know that I just plan on it all to take longer so I am prepared. If it goes as planned (which it hasn’t yet) then that will be a pleasant surprise.  

Then I pull out my checklist. I pull out my checklist and I start getting myself together. I get things together that will make him feel comfortable especially for the time from surgery to being home a couple of days. I start to get things together for myself and I shift how I do things. I work from home and run my own business so I hustle to get things done ahead of time so that things can run on semi autopilot for a couple of weeks. I’ll readjust my schedule. Cancel some classes and sometimes change the days I see clients.  

I change my mindset and find things to get excited about for during that time off. I start to make a list of shows or movies that I’d like to watch with my husband as I sit with him in the hospital or at home. I get happy about having some down time that I can spend reading magazines or hanging out on Pinterest. I find a fun book I hope to read and things that I’d like to watch by myself. You know, those shows no one else in your house wants to watch with you that you never watch because you don’t make the time. 

Or is that me? 

Maybe I’ll pull out a new hand cream or soap to bring with me to the hospital so I can get the hospital smell off of me when I go to the hotel for the night. I don’t know if it’s just me but hospital smell is a real thing. I think of meals that I can’t wait to have because they’re surgery comfort food we usually don’t have otherwise like Mac and cheese. I just find things to look forward to that I can do during the time that caregiving will be the hardest. That is what self care looks like for me.  

When I get home from the hospital with my husband I also start to lower my standards. Let me explain…

I start to let go of the things that - on a good day - I would do. Let’s say put in a load of laundry because it will take away from me being able to relax a little more. So maybe the floor could stand to be swept or the refrigerator needs to be cleaned out. If I have the energy to do it and I really want to I will. But these are things that won’t hurt anyone if they aren’t done right away.

Giving myself permission to not have to do a lot makes it easier for me to relax. I don’t know how it is for anyone else but after coming home from the hospital I’m exhausted and my main priority is to care for my husband and my daughter. That means I have to have the energy to do it. So whatever my standard was for having a productive day changes to only do what absolutely needs to get done. 

So meals are an important thing… but… do I have to make every meal like I usually do? No… I don’t and I don’t worry about it. 

If it snows, do I need to shovel the driveway? No, not right away. I’m most likely not going anywhere so I don’t see a reason to worry about it. 

I do change my clothes in the morning but it usually from pajamas to a different set of pajamas. Picking up the phone anytime it rings or responding right away to texts. Nah… if it’s not an emergency it can wait. 

So I think you’re getting the idea. 

It might seem like a no brainer but I have spent countless weeks of my life trying to do all of the things that really didn’t matter at the time and not spending more time relaxing. Sitting next to my husband sleeping and instead of being in the moment and genuinely enjoying my time with him I felt frustrated and trapped because there was just too much that needed to get done that wasn’t getting done! 

So now I look forward to staying in pajamas, not worrying about getting everything done, taking naps when I need to without having to justify it to myself. I look forward to laughing with my husband, playing games with my daughter and just being there 100% instead of worrying about what I should be doing. You know what… it all gets done later. There’s always a day when everyone gets in a mood because we all know we need to clean up. But until then my only goal is to be available to my husband and my daughter, make sure everyone eats and takes whatever medicine they need to and just cocoon for a while.  

The one other thing I do is set up help.  

There are some people in my life that I know jump in the best way they know how. They make meals and drop them off or they help do things outside for us. One time a friend decided to make a meal for us every day for a month! That was way beyond what I would have asked for. But that’s the thing. People want to help - but in the way they shine at helping. So if you ask a friend that likes to bake you cookies to help rake leaves that might not work out too well. Sometimes I’ll ask for help ahead of time. Maybe I need a trash can pulled in or something like that. I’ll also ask for help on standby.  

Here’s why that’s important. There are things you know you could possibly need or that would make your life easier. But you aren’t sure that you’ll need it. I will ask people if they would be willing to help me with that in case I need it. That way I don’t have to think of who to ask if we were to need it and they already know what I need when I ask them. So it takes the thinking and the work out of it all.  

I set myself up for caregiving success. 

I make sure I am prepared to support my husband and have the things I need for the hospital and at home post op to make him comfortable. I prepare myself to be able to be “off” once we leave for surgery. Getting anything important done ahead of time. I find things that I can do when I’m in that higher caregiving mode that I look forward doing. Like things that I’d like to watch or read. So I can have something to get a little excited about at a time that I know I will be under more stress. I let go of things that would aggravate that stress. Do just what is most important to do for each day and not be worried about the rest until it’s time to enter the world again and start to function again. In the meantime I just cocoon. 

Now that I know these are the things that I need to do in order to still enjoy life at a time when it can be most upsetting these phases are easier than they were before.  

I learned how to ride the waves with him instead of struggling to keep up. 

You can find my Pre Holy Crap Caregiving Checklist here. If you’d like to share things that you have problems with or ways you set yourself up for success I’d I'd love to hear.

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