I thought it particularly poignant to start this entry with her voice. I don't have many recordings of her, but I wanted to share this one. Thank you to VMSave for making this possible! They are a free service that will record your loved one's phone greeting for posterity.
Today has been a frustrating day. I went to bed at 4am because I was helping my sick son, I slept until 11am (which I hate), I got up and had "breakfast", goofed around a bit, had lunch with Belle, and when I sat down to start writing (which I planned to spend the afternoon doing), I couldn't find a whole slew photos that included one toward the end of this post. I spent HOURS looking for the photos and finally managed to restore them from a backup. It put my off my game! I wanted to do my processing-by-writing, but I got locked into trying to find those photos. I know part of it was the fear of losing the memories.
Besides that, today has been pretty mellow. It surprises me, honestly. I expected to spend much more time in contemplation and in tears than I have. Maybe that will come as I write this...or tomorrow during our family counseling session. We'll see.
There is so much I want to share from January 2nd and 3rd of 2019. There is so much that people don't know because I haven't told many people about my personal experiences during those days. There are specifics that just aren't relevant when you're sharing about someone's life after they pass on. But I feel like sharing these will be cathartic for all of us and maybe even bring some closure to folks who need it.
I warn you now, this may be difficult to read. But I encourage you to do so and give free passage to your tears. Those are healing tears.
On January 2, 2019 I went to the hospital to be with Joni in preparation for her being discharged. She was so disoriented. She kept talking about going home starting about the day before. It was all she wanted. She kept getting up like she was ready to go and I had to remind her multiple times that we were waiting on the paperwork and the guys with the wheelchair. While we were waiting, I remember Joni asking me "Whose baby is crying?" Ugh. Right in the gut. "There's no baby on the floor, babe." She turned her head as if to listen again and looked at me dubiously like I was crazy. "Honey, I promise you, there's no baby. I'm not pulling your leg or anything!"
We had this ongoing joke between us ever since I convinced her, early in our marriage, that Phoenix University wasn't just a school, but also sold insurance. It was a thing of beauty. She was so convinced of my story that by the time I confessed that I had made it all up, she didn't believe me! From that moment on, we would occasionally try to bluff the other...and sometimes succeed. Most of the time we'd give an answer that was surprising and when the other person said "Really?" we'd say "Nah," then have a good chuckle. Something like this:
Joni: "How was work today?"
Me: "Oh not too bad. I did have to fire someone today, though."
Joni: "Oh, no! Really?"
Me (with a devilish grin): "No."
We got very good at predicting when each other were BS'ing, but it remained a joke with us. So when I told her I wasn't pulling her leg, the look she gave me was that searching look trying to determine whether or not I was being honest. But she clearly still heard a baby. She got frustrated and looked at me with a scowl. "Sometimes you make me mad," she said. I was a little upset at the time because I didn't want her to have that as one of her final thoughts. I look back on it now and it's kinda funny! She was so serious...and yet so beautifully honest. It was the kind of relationship we had - that we could be so open and direct, but do so in a way that wasn't hurtful.
Back to getting discharged. Joni needed a wheelchair because she was so groggy - that was a combination of the drugs and what was happening in her body. To make sure we got home OK, the hospital called for an ambulance to take us home. No sirens or lights, but they could have used them if they needed to, and I kind of wished they had because I wanted to get my lady HOME.
It was an emotionally uncomfortable ride. I wanted to keep engaged in communication with Joni, but also interact with the guys in the ambulance. They were extremely friendly and tried to put us at ease by being conversational. But Joni was again in and out of lucidity. She would ask questions about the guys that didn't pertain to anything we had talked about or even the journey. She couldn't even really remember where we were going most of the time. It was very, very hard.
In the couple days leading up to her being discharged, I had worked with palliative and hospice care to make sure she had everything she needed in the house: a hospital bed, oxygen, side table for meds, all of her meds, and so forth. We had everything set up and ready for her when she came home. When we pulled up to the house, I said "Babe, do you know where we are?" She looked at me like I was a moron and said "Home," somehow barely refraining from saying "Duh."
The ambulance guys got her inside using their fancy rolling bed and she said she wanted to be in her own bed, so they took her in there and got her situated. I made sure she had everything she needed, gave her kisses and let her sleep. Much that followed was a blur. I created a detailed Excel sheet that included all of her meds, the frequency with which she needed them, places to record the last time she received a dose and the next time she could have a dose. I set alarms to wake up at the time intervals and set to work being nursemaid, husband, father, and caretaker. Needless to say, I didn't sleep well. I kept waking up in fear that she would have died in her sleep. I also remember the first visit with the hospice nurse on the 2nd after we were home. After her assessment of how Joni was doing, she told me that she had more like hours (24-72) than the couple weeks we were hoping for. Again, I told the kids and again we all shared a good cry.
While the nurse and I were sitting out on the couch talking, we heard a sickening and heavy thud - Joni had fallen. She decided to try to walk to our bathroom on her own, lost her balanced, and fell. She wasn't able to get back up. When the nurse and I got in the room (pretty damn quick, I'll have you know), she explained what happened and apologized. She apologized! The nurse looked her over, got the portable commode and helped her, then we talked about setting her up with some kind of alert to let us know if she tried getting out of bed.
Normally, she and I would have joked about this. Had she recovered and become more herself over the following days, I'm sure we would have. It's just what we did - kept our humor in light of dark events. I couldn't bring myself to do it at the time, but I like to imagine she and I share the joke now. After 3.5 years of telling the nurses at every. single. visit that she had no falls, she had to go and try to be a martyr and do it herself. Oh, Joni. I love you.
Amidst the blur in my memories, I do remember family visiting and spending time with us. My dad, ever the self-sacrificing, support man he is, offered to spend the night. This is something he had done many times in the past when stressful events hit and it always brought comfort. Close friends and our pastors visited, brought comforting words and love. My sister-in-law and her husband were over, my parents-in-law were also there. I encouraged everyone, including my kids, to spend time with Joni - to talk with her, share their dreams, their fears, say things that they would want to make sure she knew and heard.
I took time to lay next to her and read the final stave of A Christmas Carol (in my top hat and everything) because she didn't get to hear it due to going into the hospital the night of Christmas. I have a love/hate relationship with the following picture. I wish she had been alert and able to smile with me one last time, but I'm glad I recorded the moment.
The Last Thing She Said
The night of the 2nd, I needed to pick Eva up from her school because she was performing or rehearsing (I can't remember which). I wanted Joni to know that I would be right back. I wasn't sure if she could hear me, but I still wanted her to know. Since she was basically asleep the entire time, she wasn't getting a lot of fluid so we had a cup of water next to her bed with one of those sponges on a stick things. I got it wet to rub in her mouth and as soon as I started putting it in her mouth, she started in surprise. She didn't open her eyes, but I took that opportunity to let her know what was going on.
"Sorry I startled you, babe. I just wanted you to have some water and let you know I'm off to pick up Eva. I'll be back in a few minutes. I love you." Then I gave her a kiss. She weakly kissed me back and said "I love you too. Drive safe."
That was the last thing she said to me. It was our standard farewell any time either of us left the house. Tenderness, caring, and concern for our safety. I thank God that those were her final words. It felt so tender and even as I write this, remembering those words fills me, yes with grief, but also with warmth. I knew she was still there, still knew who I was, still remembered our relationship, and still adored me.
During the day of the 3rd, hospice nurses check in, I think we saw a chaplain (or was that on the 2nd?), and I remember there being this air of "is it going to happen now" or "will it be today". That's why I emphasized everyone spending time with her. Let's not leave anything unsaid.
I'm not going to lie to you: I begged her not to go. I confessed that I didn't know what I would do without her. Who would I become? How would I live life? How could I do this on my own without her? I started feeling guilty about that so I reassured her that if she left, we really would be OK, and that I wouldn't do anything stupid, just like I promised her when she was first diagnosed. But I told her how badly I didn't want to lose her. I cuddled with her, kissed her, and cried on her. And I remember restating that we'd be OK.
Later that evening, I finally had some time to post an update to Facebook.
8:15pm:
My dear friends. This is a difficult post to write. Penultimately the worst post to write. My wife and best friend for 25+ years, Joni Bentley came home on hospice care yesterday, 1/2/19. She opted for hospice instead of continuing to try a treatment that was hard on her system with a low chance of success. Since coming home, I'm sad to say that her condition has deteriorated and rather than the weeks we were expected to have together, barring a miracle (which is still possible), it's now more like 72 hours. If you are the praying sort, we welcome prayers for divine healing and/or a miracle as well as prayers of comfort for my family. Any who know her would be devastated, but particularly our family. She is a gift and a treasure beyond anything I deserve. I don't have many more words than that, honestly and I sincerely hope this post is not followed by an announcement of her death. Or at the very least, not quickly. Thanks to all who have provided support and continue to do so. I don't know what we'd do without you.
Sometime between 8:15pm and my next Facebook post, Joni passed away. This next part gives an account of what happened and may be the hardest part. Feel free to skip over it if it's too difficult. God knows it's hard for me to write.
My sister-in-law's husband, Nadim, called from the room and said that Joni needed help going to the bathroom. I came back there and he and I helped her up out of bed to sit on the commode. She went to the bathroom, I helped her get her undies back on and then we tried to get her back to bed. She was very weak and her legs started to go so Nadim and I sat her down on the bed, told her to hang on a second and that we'd move her. She was very weak, very tired, and couldn't stay sitting up.
We had her lay down and were trying to scoot her into a position to be able to roll her over. As we were working to get her in position, she had what I can only describe as a small seizure because her whole body seized up. Then she went limp and I lowered her back to the bed. (There are some details here that I've purposefully left out because they may be too painful or disturbing for people to read. If you'd like to know the details, or need them for your own closure, please contact me directly, and I'll share them with you.) I called the emergency number that Providence Hospice gave me to call in a panic and told them that I thought she was gone. To say I was tearful on the phone would be an understatement.
Once I hung up the phone, both my sister-in-law and her husband comforted me. They also reassured me that I hadn't done anything wrong in how I was trying to help her, which is one of the things that rushed to my mind right away.
I thanked them then told them I knew it might feel weird or uncomfortable, but I was going to do something Joni and I had always said we would do if one or the other of us passed away: I prayed for her to be raised from the dead. I have faith that such a thing can and does happen, I believed it could happen for Joni. If anyone deserved to live again, it was Joni. I wanted her to be raised, he body completely healed, and a miraculous sign for everyone. But I think I knew in my heart that she was ready to be with the Lord. She knew we were in good hands and that God was looking out for us (as well as a huge host of friends and family).
From there I had the unpleasant task of telling my children. I just thank GOD that our family counselor was there in the room with the kids when I had to come in and break the news. That was a horrible, horrible thing to have to do. But I'm SO glad Joni went as peacefully as she did. In talking with our counselor (who cut her teeth doing social work for families who have lost someone), the nurses, and doctors, the way Joni went was relatively peaceful and it could have been so much worse.
Shortly there after, I hopped on Facebook for my final message of the day:
Facebook - 9:43pm
She's gone. My bestie and my true love has gone home.
The hours that followed involved me arranging with the funeral home to come take the body, letting them know what we'd like done with her body, and waiting for them to arrive. It was one of my great final honors to help the gentleman from the funeral home carry Joni's body to his vehicle. I did it in the spirit of a viking sending off a great leader, which she definitely was.
I also spent time with my family comforting each other and trying to figure out how we were going to get to sleep. Some of the kids decided to have a slumber party in my oldest's room. My youngest and I decided to sleep on the couch. We built a fire, left the Christmas lights on, and drifted off to sleep.
I have been through some very traumatic things in my lifetime. More than most people and, some would argue, more than my fair share. I can name several days that could easily be crowned the worst day of my life, but January 3rd, 2019 takes the cake. Or maybe it's tied with the day we first got the diagnosis in 2015. In the span of a few days, I had to make some of the hardest decisions I've ever had to make, have the hardest conversations I've ever had to have, and deal with some of the most gut-wrenching experiences I've ever had.
And yet, our whole family agrees that we saw the hand of God (in a good way) in the midst of the tragedy on that day:
Our family (including friends who might as well be family) was in the house.
Our pastors were in the house.
Our counselor was in the house.
Joni did not suffer.
Everyone got a chance to be with her, spend time with her, talk to her.
She passed away in her own bed exactly where she wanted to be.
The incredible peace that descended on our home in the midst of our love for each other.
And since then, we continue to see God moving for our good. Sometimes it's hard to see. Sometimes it's hard to accept. The last year has been such a mixed bag of the pain of grief, the sorrow of loss, the joy of love, and the pride of growth.
The Bentleys have done well. Remarkably well. But that's how Bentleys do it: We look at challenges and instead of shrinking from them, we say "bring it on". We look at the odds...and do it anyway. We may falter, freeze, or even flee for a time. But we don't give up and we won't give up. And I know Joni wouldn't have it any other way.
Thank you so much for being a part of this journey with me and my family. Your words of encouragement and your transparency about how my words and experiences have helped you have meant more to me than I can say.
As always, thank you for reading.