Episode 52: Five Things I Learned About Caregiving

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First off I want to thank you for following this podcast and listening to (or reading) it over the past 12 months! I started this off not knowing if it would help anyone or even if anybody would listen Now I have people from all over the world listening! All of the email messages, private messages through social media and reviews you’ve left on iTunes has given me the fuel to keep on going on the days it feels the hardest to share. 

This is our 52nd episode together. I can’t believe that I’ve actually recorded every week for a year! Over that time I’ve learned a lot about myself and you’ve been listening to that in real time. I started out just wanting to let other caregivers know how I feel about things because when I started out caring for my husband I felt really alone. I had supportive family and friends. But, there were just things I couldn’t talk about with them and feel like I was being understood. Somethings I couldn’t talk about to others because I felt like I would be judged. Other things I couldn’t talk about because I didn’t want to hear them out loud. Knowing all that, and knowing there would be the possibility that a podcast would require me to be more vulnerable than I’d like to I decided to give it a try. Yes there are a lot of episodes I hesitated to release. There are a lot of times when I had to pause while recording to just have a dirty cry, compose myself and continue. It has been worth it to me because I’ve had people send me a message telling me that when they listen it feels like I’m in their head. Like I know what they are going through and thinking. And that’s because I do. I’m actively caregiving for my husband. Sometimes these episodes are raw because I’m in the middle of the mess of it all. My husband has had two surgeries in the past 12 months all related to cancer. So I am living it just like you. But I figure if I can’t sit and talk to a group of caregivers in person.. why not just sit in my closet and talk to caregivers through a podcast.

I had the pleasure of interviewing people for the podcast this past year. I learned so much from them and hope I was able to help you see caregiving in a different way by looking at it through their perspective. I know there are things that I learned from each conversation I had and I hope you did too. I’m also thankful that each of them felt there was value in speaking to all of you. 

I also really enjoy everyone that has become part of the FB group. I look forward to that becoming a place all of you can go to in order to find positive solutions to caregiving problems you are having. I’m loving all the people who have downloaded the pdf full of caregiving tools from the website as well. Some of you have told me how helpful it has been for you and I love that it could help.

If you are interested in learning more about these and downloading the pdf you can find it here.

Now on with it….

The Five things I’ve learned as a Caregiver this year.

Number 1: I need to cut myself a break. 

I have spent so many years caregiving and trying to do all the things, all the time. 

It doesn’t work… Admittedly my caregiving levels go up and down like a rollercoaster. So sometimes I go through life with less stress than others but not for long. I guess it’s more like a wooden rollercoaster instead of a new one where you get to the end in two seconds and have no idea what happened. Like a wooden coaster I slowly tick tick tick up the tall hill knowing that once I reach it all hell will break loose and I’ll want to scream so forcefully that the noise doesn’t actually come out. Then it levels out and I feel good and calm and enjoy the wind hitting my face until we slow down at the bottom of a hill and as we start to go up it. I have to fight the urge to just jump out. 

So… When I’m moving up that rollercoaster hill and finding myself flinging down it I know that 

I Can’t Do All The Things I Normally Could!

And I’m ok with that. You see in the past I started out not knowing that I couldn’t do everything. I tried to and when it didn’t happen I’d find myself stressed out, overwhelmed and feeling like I was failing in life. After a couple of times of that I realized I couldn’t do everything but I wasn’t ok with that. I would still try to be a full time caregiver, go to work, be a fun mom, keep the house clean, cook every meal and socialize with friends all to find myself completely robbed of all energy, unhappy and feeling like I was a failure at life. 

Slowly I learned that I couldn’t do all the things, still hadn’t accepted it but also didn’t know what the alternative was. How could things go on if I didn’t make sure all the clothes were washed al the time? How could we survive if we ordered take out more than once and god forbid during the middle of the week?  

Then I began to realize none of it mattered. All the things I was stressed out about. All the things I was doing to try to keep it together didn’t matter at all. It didn’t matter if the clothes were washed in a timely manner. If we all were close to running out of clean underwear then I knew it was time to tackle that chore. If I was exhausted and wanted to just spend time with my husband and daughter I would have no problem ordering food or just microwaving something from the freezer. I began to learn that good enough was good enough. 

This year I really cemented that and accepted that I was ok with things not being anywhere near being perfect. I was ok with doing the things that matter that day. If that meant that I spent all day sitting in bed beside my husband because it meant he could sleep better then that was fine. I learned that I was excelling in life because I was finding ways to enjoy it even though I found myself in the middle of caregiving chaos. I learned how to cut myself a break. Give myself some space to be human and change my priorities and expectations. 

No 2: I can’t worry about things that haven’t happened. 

I have spent so many years worrying about the what ifs. It’s a thing I do. It’s why I have ziplock bags in my car…. my daughter would throw up a lot when she was a toddler and I was always so worried she would throw up at any moment I started packing ziplock bags everywhere. That was over 10 years ago and I still have at least one ziplock bag in my car just in case. There is no fact that I could tell you would be the reason for me to do this. It’s all based on fear.  

And that is what worry is based on. Worrying about my husband’s tumor sizes is not based on fact. The fact is they exist. However I do not KNOW that they are growing over the 6 months that he had in between check ups but I FEAR that they have and so I WORRY about going back to scans. 

So I essentially have learned to try to face my fear. I’m not saying I am a pro at this yet but I know what needs to be done. Worry and fear are mean little things. They find something in your brain that you have doubts about and, if you let them, they will grow into something big. I understand that… when I begin to worry and I catch it I start to look for the facts like a CNN fact checker. What is real? What is a fact and what part of this worry is based on fear? 

My husband had another pretty big surgery last month and I found that in the days leading up to it I was oddly calm. I wan’t very worried at all and it bothered me. Isn’t that something… I figure out how to do something and then it bothers me when it actually works.  

I was concerned that I wasn’t really worried about it and it was because I did all I could do at home to prepare for his recovery. I was set with the things that I needed for his hospital stay and I accepted that there wasn’t anything I could do to control the outcome of his surgery. I was looking at the situation and cutting out all the worry and fear to see the facts and that let me move forward into supporting him more because I wasn’t feeding my fear.  

No 3: It’s going to happen anyway. 

I’ve talked a couple of times in this podcast about how there are moments I feel the urge to run away and avoid a situation because I just don’t want to deal with everything it requires me to do. Surgeries are one of those things. Going to doctor’s appointments to get scan results is high on that list too.  

But here’s the deal… those things I try to avoid are going to happen anyway. I can chose to be pulled into it kicking, screaming, and dragging my heels. Or I can own it and walk in ready to encounter what life is going to throw at me.  

I’ve done both and here’s what I found… If I go into let’s say a doctor’s visit and I feel the anxiety from the power one sentence from the doctor’s mouth can have on our lives then I’m … 

  1. Not available to be strong from my husband and ease the fears that I know he isn’t talking to me about right then.
  2. Thinking of the worse case scenario which I have no fact to base the need for that on.
  3. Possibly won’t hear what the doctor is actually saying because I’m always listening for the bad news when it isn’t always going to show up and that makes me bad at one of the most important reasons for me to be there - hear exactly what the dr says so my husband doesn’t have to worry about doing it. 

If I walk into that visit just ready… ready for anything,…. For the good news the bad news whatever it is, just ready. 

If I go in with the mindset that no matter what happens during that visit we will figure it out and we will make it through together then I

  1. Don’t signal to my husband that he needs to worry about me and give him the opportunity to feed off that vibe and possibly give him more hope and feel secure that we are in this together.
  2. It lets me connect with him in a different way. I usually find things to joke about or bug him while we are waiting. If I’m super stressed out I am quiet and in my head way too much.
  3. I can really see him and give him what he needs based on what his body language is telling me.
  4. I can be prepared to jump into problem solving or celebrating but in the meantime be Abel to hear exactly what the Dr is telling us and be able to ask question because my brain isn’t focussed on looking for the floor to fall out from under us.

No. 4: Taking care of myself is extremely important. 

I’ll admit that it’s hard. But this past year I have given myself way more room to do less when I needed to care give more. I have cancelled classes and working with clients for a few weeks so I can be fully present for surgery and at least a week after. 

I have a practice of deep breathing that I am able to do at any time and thankfully have been doing it for long enough that I can pull it out when it’s needed. This has allowed me to be a resilient caregiver and is a remarkably strong tool for me because it has helped me mindfully navigate through caregiving and come to accept the things I just spoke about in the past three points I just made. 

I had the strength to take a week off for myself in January and I created a week long retreat at home. I learned more about what I like to do for relaxation and stress release during that week than all the yoga classes, retreats and trainings I have been to over the past 12 years. 

I have also learned that making myself a priority is difficult. It’s hard for me to say because I would shout it out from the rooftops that caregivers need to take care of themselves. I understand the pain of trying to figure out how to find the energy to do that. That’s when I remind myself of the first thing I told you I learned - I cut myself a break and remind myself that I can only do the best I can today and start again tomorrow.  

No 5: Caregivers need to find ways to stay connected. 

The last thing I learned is that - as isolating as caregiving can become, community is extremely important. It breaks my heart for me to read or hear caregivers say they have no one. No one to talk to or hangout with. Sometimes they are estranged from their families. Their friends have drifted away because they couldn’t understand what caregiving was. There is a lot of division in the lives of caregivers that happens specifically because of the health situation of the person they are caring for. It’s easy for us to isolate ourselves because we feel misunderstood. It takes too much energy to socialize. Or it could be because caregiving and illness opens up the cracks in our relationships that we’ve been trying to ignore.

We can not care give alone. We need people to talk to, we need help and a team of people who are at least ready to help when the opportunity arises. We need people who have been down this road we are on before us so they can tell us it’ll be ok or share a tip that makes something so much easier for us.

We need each other so that we all know that we are not the only ones, we aren’t bad people for thinking, doing, wanting something because we all do that one thing but don’t want to admit it. 

We need to understand that we all have real feelings and emotions and that we should speak to each other with the respect and love every human being deserves. We need to be able to ask for help without feeling judged.  

Caregivers need a community, human connection. We all need to find a way to love the life we are living as caregivers.

It has taken me some time to get to learn these five points. Which one will you try first?

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