“When you can’t look on the bright side, I will sit with you in the dark” —Mad Hatter
One of my favorite quotes from “Alice in Wonderland” and describes pretty perfectly where I’m at right now. Frankly, I am exhausted…physically, emotional, spiritually, socially…all the ways a person can be tired…I am.
The vast majority of the time I am with people I’m pasting on my smile…forcing my laugh…pretending I’m doing okay. The proverbial “fake it til you make it”. I’m not making it.
When I’m alone, by myself and I can let my fake smile drop it is such a relief. I still have a hard time completely feeling my feelings…my person who could put me back together after I fall apart is no longer here. I feel like if I let myself go to pieces I will not be able to stop.
So I will be thankful for the few people in my life that are not made uncomfortable by my grief. That aren’t constantly trying to cheer me up. Who will just sit with me in my sadness…in my darkness…give me a shoulder to cry on…a hug…and know that happiness is not for me right now…maybe someday…but not today.
Jason would be so proud of our kids right now. Anna has been back at UW-Eau Claire for 3 weeks now and is having a great start to her year. She has already had several marching band performances and made it into symphony band again this year. She also figured out what to do when your windshield wiper “goes flying off” when you’re driving your car. Guys working at auto parts stores are very good at helping teenage girls with such problems.
Seth..our Peter Pan kid…you know…the one that just doesn’t want to grow up…is really stepping up to the plate. He just started a job…his first one! And is learning how to drive thanks to a friend of ours who volunteered to teach him. He is such a great young man and I am so proud of him. He is also usually the one that remembers that Wednesday night is garbage night…why is that so easy to forget??
Levi…complete opposite of Seth…can’t wait to grow up…is starting high school this year. He’s the most social of our kids so he forces me to get out of the house and see people even when I don’t really feel like it. He is also a huge help around the house. He helps make dinner a lot and other chores around the house…like mowing the lawn.
Then there’s me. I feel like if Jason were here he would be very unhappy with my lack of being able to get anything done. He would be very agitated that I haven’t really made a single phone call. He would be on me every day to call life insurance companies, banks, etc and get things squared away. I just can’t. Part of it is time. I’m at work from 8am-4pm every day and then come home and get dinner going and the boys to their stuff. Most of it is…I just can’t. It feels like taking a huge eraser and smudging out everywhere it says Jason Fregien. I like it when his mail still comes to the house. I like that all of his things are still here…right where he put them…where he liked them.
So lonely, but I don’t want to be with people…I want to be with just one person…my person. How am I supposed to go on for the rest of my life feeling lonely? I don’t know.
Jason and I got married young…22 years old! And had all three of our babies before we turned 30. We were just starting to enjoy the sweetness of life. Our kids are awesome and fun now! We don’t have to deal with temper tantrums, naptimes, time outs…well, unless we let Levi get too hungry…lol. Jason was looking forward to being able to play tennis with our boys as equals…instead of holding back with them. Anna is in college and such a lovely young lady…on the precipice of great things.
We were enjoying being able to go out on date nights without worrying about the kids…as long as we ordered them Cane’s! We enjoyed each other’s company so much it didn’t even matter what we did! When Covid hit and nothing was open we would go through the Caribou drive-thru and sit and drink our coffee in a parking lot. It didn’t matter. It sounds cliche, but is totally the truth…all we needed was each other.
And now….what? I want him back. But as I have been repeating to myself all day “He’s not coming back. He’s not coming back”
Everyone…friends…family…the grief counselor…keeps telling me that I need to make sure I’m taking care of myself and practicing good self-care. This weekend I decided to try to make that a goal.
Yesterday I decided to dump out a jigsaw puzzle. I love doing puzzles. They remind me of my Grandma and give my brain something to do besides spin in circles. And I can watch the US Open while puzzling…bonus!
Yesterday evening I spent with a friend of ours which was fantastic. We took the dogs for a walk and she helped me finish flipping over the 2000 puzzle pieces…so many pieces! I love spending time with her because she is so chill and just goes along with whatever is happening. If I would have said “we’re running to Target to go grocery shopping”…she would have said “cool”.
This morning I spent a lot of time drinking coffee and writing. Then I took the dogs for a walk and ran on my treadmill. I wish I could run outside more, but I feel like I need to be careful of my knee these days. Plus when I run on my treadmill I can read at the same time…bonus!
This evening I took the dogs for a walk with my neighbor friend. It was such a nice evening for walking and talking. Lots of people were out having fires with friends.
I just walked in the door from my walk when I got a phone call from a very good friend of mine who I have not talked to enough in the past years. Thankfully, we have one of those friendships where we can just start talking and pick up right where we left off! I had a great conversation with her and hope that we can talk more frequently. She has two young boys that take up a lot of her time…I remember those years!
I’m not sure what tomorrow looks like yet…but today I think I did ok.
Today I thought I would try to give 5 pieces of advice on things to say…or not to say… if/when you are talking to someone who either has…or is caring for someone who has…Glioblastoma or another terminal illness. When I think back on some of the things that people have said to me I believe that every single one of them was said with the very best of intentions…which is so important…and which I always tried to keep at the front of my mind.
It is okay to admit that you don’t know what to say….because really there are no perfect words…there is nothing magical you can say that is going to make the situation better. Some of the times I felt most supported were by people who simply said “I am so sorry to hear what your family is going through. That just really sucks. I don’t know what else to say”. This is very non-threatening and allows the person to either just say “thanks” and leave it at that…or say more if they feel the need or want to talk.
Try not to ask “how are you doing?” I know it’s hard because it’s a natural inclination to ask anyone that we talk to that…but it is virtually impossible to answer in this circumstance. My stock answer has quickly become “I’m hanging in there” because nobody wants to hear the real answer to that question…and frankly most of the time I don’t even know.
Please don’t give medical advice based on your neighbor’s friend’s sister that overcame breast cancer…or your uncle who had pancreatic cancer that is in remission. I know it is human to try to understand a new situation by comparing it to something you know about. The fact is that Glioblastoma is a f’ing asshole that is way different than any other type of cancer. Believe me….there is no knowledge that you can share that the caregiver has not already heard of, researched, asked their doctor about, etc. The caregiver quickly becomes an expert on the illness and any and all possible treatments out there.
So many people would say things like “I hope you feel better soon!” or “Keep fighting!” Again…best intentions…not really the best things to say to someone with terminal illness. Something like, “we think about you and your family often” is a much better option.
Instead of saying “Please let me know if there’s anything I can do for you” try to give examples of concrete things you would be able to do to help out. For example, “We live really close to you. Let me know if the boys ever need rides.”
Maybe that is helpful…maybe not. Circumstances like this don’t come with a handbook outlining the perfect things to say and do…because there really aren’t…but I think these are good things to keep in mind. Just try to be as supportive as you can possibly be because that is what the caregiver truly needs…and reassurance that they are doing a good job.
Today I had my first appointment with the Grief Counselor who is available as part of the hospice program that Jason was in. I was not looking forward to it…actively dreading it…almost cancelled it numerous times. Grief counseling is not something I want to have to take advantage of. I don’t want to need it.
Here’s the thing though. I spend a lot of time feeling nothing how I anticipated I would feel…nothing how I think I should feel…nothing how I think other people think I should feel. I thought I would be spending all my time crying…not wanting to get out of bed…not able to function. People tell me I’m so strong because I’m back at work…taking care of my kids and dogs…functioning pretty well. I cry sometimes, but I can also go days without crying. They tell me “I don’t think I could do that”…which by the way makes me feel like shit because I feel like I am not feeling “bad enough”.
My takeaway from the Grief Counselor–I am only functioning well because I am in shock. And my shock has been compounded by the fact that we did at-home hospice…there were many aspects of his end-of-life care and death that were shocking and horrifying and have been impossible to put to the back of my mind. When I close my eyes at night those days are on repeat in my head…over and over and over.
Once she pointed it out to me and explained it to me it was a huge “ah ha moment”. After she left, I found this article published by the Hospice Foundation of America titled “The Shock of Loss“. Several parts of it really hit home for me:
People in shock often appear to be behaving normally without a lot of emotion because the news hasn’t fully sunk in yet.
Detached from the reality of the loss, you may be able to function pretty well at first. This can be confusing to the people around you, when they expect full-blown grief and suffering that you don’t yet feel.
Staying awake late at night obsessing or falling asleep only to wake suddenly in the middle of the night are both normal reactions.
Yes. That is it exactly.
Don’t get me wrong. I don’t regret our decision to do at-home hospice one iota. It was the least that I could do for Jason…to make sure his last days were comfortable and that he was surrounded by the people who loved him with his dogs looking over him.
Today marks four weeks since Jason has been gone. Every day is harder…reality sinks in just a little more…tears are closer to the surface…getting out of bed a chore. My mornings are a struggle…hard to get going. I’m glad that I am back at work…if I get there and just need a hug to give me strength for my day I am always able to find someone to give me one. Then I am able to throw on my “Everything is Fine” mask to get through my day.
Getting home from work is a slap in the face again. Walking in the door and not seeing Jason sitting on the couch waiting for me…happy to see me home. No one to talk to about my day…except the dogs…they’re always happy to see me.
I try to keep up some semblance of normal at home for the boys…eating dinner together…running them to their activities…taking the dogs to the park to play. Then they go to their rooms to chill and I am alone…so I write…missing Jason next to me…wishing my feet were on his lap…or warming up under his thigh.
Someday maybe things will get easier, but that day is not today.
It’s Freshmen Eve in our house tonight. Levi is pretty excited. He’s showered…packed his lunch…backpack ready to go…alarm set. I am hardcore struggling. Yes, he’s my baby so it’s hard to see him growing up…that’s definitely part of it. The other bigger part is that I just can’t stop thinking how unfair it is that his Dad isn’t here with him.
Jason was pretty newly diagnosed for Anna’s graduation and was a very proud Dad to attend her two very strange “covid-style” graduations from Eastview and the School of Environmental Studies. He fought hard to make it to Seth’s graduation…even though it was hotter than blazes outside…there were a lot of people…and a long walk…he did it. So proud of Seth and unwilling to miss the ceremony…no question in his mind that he was going to be there.
Now with Levi, my heart just aches. It is so unfair that his Dad is gone before his high school career even started. He’s left with just me…and I feel like so far from enough. So as I’m putting all the important school days on the calendar…and the chess team schedule…and the tennis drills..trying to make sure nothing slips through the cracks…all I’m thinking is “I wish Jason were here”.
Do you ever have a dream that sticks with you throughout the day and you just can’t shake it? That was me today. I had a pretty much identical dream twice last night. In my dream “they” let Jason come back for a few days. I don’t remember him saying anything to me, but I distinctly remember being tucked in his side under his arm and telling him how shit life is without him and how I don’t know what to do with myself when he’s gone. Both times I woke up with tears streaming down my face. I wish he would have said something…but he didn’t.
He would have been so proud of our boys today. Seth got his first job at the same health club I work at. I jokingly told him at dinner that he can now either call me Boss or Mrs. Fregien…he didn’t even chuckle…rude.
Levi had Freshmen Orientation tonight. I’m not ready for my baby to grow up. I was glad it was dark when they were playing the intro video because I was so teary-eyed thinking about how Jason is going to miss all of his high school years. Ugh…that sucks. Go Eastview Lightning Class of 2025!
3 days ago I spent our 21st Wedding Anniversary without Jason. It was a very hard day for me. I woke up in the morning brutally sad from the first opening of my eyes….tears just would not stop rolling down my cheeks. I kept trying to pull myself together, but it was a struggle. Up until this point, every time I would see elderly couples together celebrating 60+ years together I would envision Jason and I like that…old and wrinkled and still very much in love…embracing the Grandma/Grandpa life. It hit very hard and hurts very deep the brutal truth that will never be us.
Last August for our 20th Anniversary we took a little getaway and stayed at a cabin on a lake in Alexandria. The pictures from that trip have been showing up on my Facebook memories. Jason was still doing pretty well back then health-wise. He had memory issues and confusion, but for the most part he was still “my Jason”. He hadn’t suffered from seizures yet or had his second brain surgery…the two things that he really never recovered from.
I knew deep down that there was a very real possibility that Jason and I would not spend another anniversary together. It was very hard for me to live in the moment and enjoy every second with that knowledge looming over my head, but for the most part I did and we made a lot of good memories that trip…fished…walked through Downtown Alexandria…went to a winery…went out to eat at a place that had live music outside on the patio.
This is one of my favorite pictures of us…while he was sick anyway…and it is from that trip.
Love, Tennis, and Cancer 