The Smokey Thing
10:40 AMWhen Mom was first diagnosed back in February, I had a brief private conversation with Dr. Frank...the ER doctor who had the incredibly tough job of telling us Mom had cancer. I remember him saying to me "this is going to be really tough". I said I knew, I mean we had just done this song and dance with Dad not even 3 years ago. Truthfully, I did not know the kind of tough that was ahead or how different the end of life journey would be for Mom in comparison to Dad.
This week is the start of our fourth week into hospice care for Mom. The last month Mom has had many wonderful visitors- family and friends from many different parts of her life. Last week her decline was becoming more apparent, everything from decreased appetite, difficulty swallowing, decreased mobility, to increased confusion... just to name a few. It was tough to see her go through these changes but we knew that the end was getting closer and it was time for us to spend time just Mom, Kristen, and I.
Thursday, Mom started becoming very restless. She was up and down from the couch, to the kitchen, to the bedroom. That night I was up with Mom every 20-30 minutes the entire night. She kept wanting to go to the bathroom, change her pajamas, get out of bed, etc. After speaking with her hospice nurse, Trish, she said all of her changes and restlessness were signs of her approaching end of life sooner than later. Mom wanted Trish to always be honest with her so we had to have the tough conversation with Mom about what was happening. Truthfully, we had been avoiding it because we did not want to crush her spirit and ruin any hope of her meeting baby James in a few weeks. The conversation was emotional but Mom understood and we set a new plan in place.
Mom's medications were changed to three liquid medications, morphine, ativan, and haldol. The morphine to continue to manage pain (which she has not complained of in weeks) and the other two to help her relax, sleep, and not be so restless. The restlessness continued day and night the entire weekend along with increased confusion. Her actions made sense in her head but not always to us. For instance, she asked for her "smokey thing" (eCigarette) as we call it, and instead of smoking it she was touching her toes with it. I doubled and even tripled some of her medication doses hoping that would settle her down but it honestly seemed to do the opposite. To give you an idea, what I was giving Mom would make my most combative, insane, patient in the ER sleep for 12+ hours straight. Kristen chose to say her goodbye's to Mom last week as it has been really hard to see her the way she is. With that being said it was just me managing her care (with the help of her amazing friends Sharon, Mo, Kathy, and my husband Aaron) and after 4 days of chasing her around day and night I knew this was too much for me, even with help, to handle.
When we originally set up hospice, Mom was adamant about passing away at home. It was 100% the hardest decision I have ever made to change the plan and place her in an inpatient hospice facility. I felt like I was betraying her and not following her wishes. I was worried that she would be upset with me, or that she would wake up if I wasn't there and feel abandoned, among so many other emotions. However, after Mom's hospice nurse came to see her on Monday and saw exactly what we were dealing with, she said whole heartedly that an inpatient unit was the best option for Mom. They would be able to more closely monitor her medication and adjust them so her mind and body can relax. Terminal Agitation or Restlessness is a real symptom of dying patients [especially those that are younger and may not be fully at peace with dying] and is what Mom is experiencing right now. This website does a good job at explaining it. Since Mom is such a fighter and healthy aside from what organs the cancer has effected (affected? its late I don't know the difference at the moment..) her body and mind are resilient and are not tiring as easy as the average person. It is pretty impressive, and I would expect no less from my warrior mother.
Mom has been at a wonderful hospice facility through Hospice of the Valley for the last 24 hours. The experience has been overall a positive one- she has a beautiful private room with a patio, amazing staff that put their heart and soul into giving her the best care possible, and she has had multiple few hour stretches of sleep throughout the day and night. Even though deep down I know she is in the right place, my heart breaks every time she wakes up because she says "ok I am ready to go home now" or "is it time to go yet?" with a sassy and annoyed tone. She has these moments of clarity sprinkled within her confusion which makes it so hard because we know Mom is still in there at her core. I hope she knows this is the best and that she is here because we love her. Why do the things that are best for our loved ones feel so unfair at times?!
Thank you for the continued love sent her way, I read her every card, text, email, etc. Although she doesn't respond like she used to, they saying hearing is the last sense to go so I know she keeps all of your love deep in her heart.
Lastly, it was pretty cool last night to see that an article written about Mom in the Arizona Republic made it's way to the front page of USA today. While I hoped the article would touch a little more on prevention- I think Mom's story is enough to remind people to get your check up's and listen to your body. It was another amazing tribute for my amazing Mama and I am glad the world gets to see just how incredible she is.
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| One last BFF girl's night, complete with matching PJs |
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| "Flat Mama Lou" made it all the way to Sydney, Australia! |
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| Happy Easter! The Easter Bunny (aka my husband) dropped off our favorite treats on Sunday. I think my heart exploded. |
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| Aaron set up a 4D ultrasound so Mom could meet baby James (did I win the husband lottery or what?!). She ended up not being able to go to the appointment with us, however loved the pictures and video. She said he looks like Aaron :) |
31 comments
Layne, bless you for the care you're taking of your mom and for keeping those of us who are far away informed.
ReplyDeleteThe up-and-down-all-night is your mom's way of giving you a headstart on what it's like taking care of an infant!
Tons of luv to all of you.
ReplyDeleteTons of luv to all of you.
ReplyDeleteLayne - we have never met but are related - I am Lou Ann's first cousin, Karen Hewitt Guest. I have been keeping up with your mom's journey through Rex. My heart really goes out to you and your family. My sisters and I just went through this last May with our mother, Ruby Ridennoure Marshall, Lou Ann's aunt. Please give Lou Ann my love and plenty of hugs.
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ReplyDeleteI saw a post on Facebook your Uncle did a last flight for his sister, your mom. I can relate to the pain you hold inside of seeing your mom go thru this. I lost my mom to Lung Cancer, Nov. 12, 2011. Never doubt your decision putting her in a hospice facility, rather home. Your mom knows you love her and you want the transition to be a comfortable one. Far as Baby James, tell him about your mom, the good and the bad. As you watch him grow you'll see a lot of your mom in him. I had a son a year later and a few days of my mother's death. At a few days old he fixed his eyes on her picture as if he knows her. Right now at 3 years old I see a lot of my mom in him. Yes you'll be sad but you'll see the happiness she has in baby James. Also let your mom know, the family will be fine,she needs to here that. One last thing, it's okay to cry, just don't cry to long because you need to live your life according to what God has planned and how your mom would want you to.
ReplyDeleteThank you! Thank you! Thank you for your wonderful updates for all of us that love your mother. You are further proof what an amazing person your mother is. I know none of this can be easy decisions for you, but you are handling every moment with the same grace your mother would have. 24 years ago your mother was the flight attendant that hired me and I thought she was so beautiful and I wanted to be just like her. Every time I flew with her over the years I was always in awe of her grace and selflessness she showed to all her customers. I could only dream to be like her one day. I just wanted to touch base and let you know that she had touch me and that you and your sister are loved.
ReplyDeleteAs a flight attendant from a sister carrier, I only know of your mom through friends, and articles and posts. Please know that so many of us are praying, not just for your mom, but for all of you right now. Thank you for taking time out of caring for her to share this with us.
ReplyDeleteLayne, Im a SWA sister of your mommas. I got to meet your sweet sis Kristen a couple of months ago on a flight. And I've known your momma for my total of 28 years at SWA. I know that you know that she adores you both. We recently spoke of the wedding and how excited she was to be a grandma. I know it doesn't really help much to hear of others' similar stories, but our lives are so very similar. I lost my mom at 54 to cancer and my daddy right before her at 56 to cancer as well. I know the pain of losing my momma. Daddy hurt, but momma? We are NEVER ready to lose them. As my mom got more and more ready to meet Jesus face to face, it seemed so much easier to let her go, so that she could be at peace.... Until she was gone. Then I told myself I could have done the care taking for a LOT longer... I say this to tell you what truly saved me... My faith for SURE, and also the question.... If I could... would I REALLY take her from paradise, to be here with me??? I asked myself that at least 10 times a day at first... then only 5 times a day for a while then once a day... then .... well, you get the idea. We will all see your beautiful momma again, praise God! Until then, please know that she COMPLETELY trusts you to make these tough decisions. Im proud of you... and I know she is too! <3
ReplyDeleteDeLynne Bock
Let go and let God sweet lady, I pray everyday for peace and comfort for you and your beautiful family .....
ReplyDeleteThank you for sharing LouAnn's Journey with us. Both you girls are amazing. God Bless you both and especially your Baby Boy! My LUV and Prayers continue for your Beloved Mom.
ReplyDeleteSteph Zanter
YOU. ARE. AMAZING!!! God bless you all❤️
ReplyDeleteYou are both amazing daughters and are making the best decisions for your mom. My prayers to you and your family. Love you LouAnn. XOXO
ReplyDelete-Sarah
I love you LouAnn. I cherish our friendship. Layne and Kristen... you are in my thoughts and prayers... always. please know of my love for your family. all my love... trisha johnson
ReplyDeleteBe assured of our prayers during these difficult days.
ReplyDeleteI grew up in Grand Island and graduated in 1975.
A beautiful lady - our thoughts and prayers are with you all.
Prayers & Blessings to the entire family and especially all of the care givers helping LouAnn.
ReplyDeletePeace to you all-
Scott & Cathleen
Thank you for the update, Layne. You are doing a tremendous job! My heart and prayers go out to you, Kristin, LouAnn and your entire family. Godspeed <3
ReplyDeleteLove, Phyllis DeRubeis & Family
Your mom's story grips me so hard. I read the AZ Central on FB, and jumped to your uncle's album. And then I found your blog. My mother was fighting with Terminal Restlessness at 59 because she just couldn't leave us. I has just lost my daughter's twin in utero, and docs made me leave her hospital bed because I kept going into premature labor. I left her, telling her she had a grandchild waiting, and to kiss the other goodbye, and send her down to me. I have you girls and your uncles in my prayers. I pray for your peace, comfort, and joyful memories.
ReplyDeleteYour mom's story grips me so hard. I read the AZ Central on FB, and jumped to your uncle's album. And then I found your blog. My mother was fighting with Terminal Restlessness at 59 because she just couldn't leave us. I has just lost my daughter's twin in utero, and docs made me leave her hospital bed because I kept going into premature labor. I left her, telling her she had a grandchild waiting, and to kiss the other goodbye, and send her down to me. I have you girls and your uncles in my prayers. I pray for your peace, comfort, and joyful memories.
ReplyDeleteThank you so much for these updates Layne❤️ Your mom is so, SO loved
ReplyDeleteThoughts and prayers going out to you and the family during this tough tough time.
ReplyDeletePhillipians 4:13 I can do ALL things through Christ who strengthens me.
Meaning we have the abilitity to endure. God bless LouAnn as she transitions from labor to reward, and may God Bless you Layne and the entire family.
I found you via a post from the Today Show. I am a Stage IV PanCan Warrior myself, 10 months into this crazy journey. I pray your Mom is at peace throughout her journey. I know that this is hell. Our local 5K raising money for Pancreatic Cancer (The Kosten 5K) is Sunday. I will add your mom to my list of people whom I will be honoring.
ReplyDeleteMuch love to you all,
Kali (Memphis, TN)
Layne. Your mom is one of my "breast cancer sisters" through breast cancer.org's Nola in September thread. I am so sorry to hear about the return of her cancer. Although I had never met LouAnn in person, I loved her witty posts. Please send my love. She will know me as Nordy - a recostruction patient of Dr. Sullivan's.
ReplyDeleteLayne,
ReplyDeleteI saw the article on your Mom on the Today show and had to share it. I lost my Father to this terrible disease 7 years ago. I know the pain you're going through. It's the most difficult thing I've had to bear. Your mother's story is amazing, and what Rex did for her is heartwarming. Please know that I'll be praying for you and your family. You're not alone in your struggles. I pray that your mother is at peace and that you too find peace as you go through this difficult time.
Louann my thoughts and prayers are with you. We were in student council together in high school. You were a great mentor for me. You helped get me to early morning meetings before I was driving. You displayed true leadership in so many ways. Blessings across the miles.
ReplyDeleteI never met LouAnn, but I am also a NOLA girl who had Dr. Sullivan. I just lost my mom two months ago, and my heart goes out to you all. Love and peace to you. xo, galia
ReplyDeleteI also am part of the SWA family. My heart breaks for you. I lost my 91 your old Daddy last month. He also was on hospice. i took care of him at home until the end. As you said watching the agitation and restlessness is heart wrenching. From the bottom of my heart I feel you made the best decision. Now you can be there and love her with a little bit of rest. Much love.
ReplyDeleteMy heart goes out to you....I lost my mom 5 1/2 years ago to pancreatic cancer. It's a horrible cancer....only 8% survive 5 years....pathetic that we haven't found a better treatment yet! Your mom is at peace and it sucks not having her around. Keep this momentum going about your mom....raise awareness, keep gathering donations...it's the only way we are going to win!
ReplyDeleteJust wanted to send my condolences to you and your family. I just went through this two weeks ago, burying a very close, my hero cousin after being perfectly healthy his entire life until cancer. Your mom's work is done here I hope you and your sister continue in her legacy. You will see both your parents again, glad you were able to tell her you will see her later. Take care with much love and respect. Darcell
ReplyDeleteI saw a USA today story today, quite by accident, that led me to this blog.
ReplyDeleteI'd been reading a different story and saw a photo of a woman that I, strangely, recognized.
I've learned that woman is LouAnn Alexander.
I was on a SWA flight in January 2015. We'd been flying since Texas, through storms of sleet and snow and turbulence. Our incoming flight was late, and we had to take a different connection. LouAnn was our flight attendant on our connection. She instantly improved my awful day.
She was so charming and funny that she had several of us chuckling during the flight announcements. :)
I stopped to tell her thank you when we landed; I wanted her to know she'd actually made my day better after our previous, horrible, flight. Then, this lady, whom I'd known in the most casual of ways for only 90 minutes, gave me hug and a smile. (And several extra bags of pretzels.)
It was the same smile that I recognized in the article.
I was saddened as though I'd lost a friend when I read of her passing today, even though I did not personally know her. I cannot begin to express how sorry I am for your loss.
My sincere condolences to you, her friends and family, who are hurting most of all.
I'm sure she has her own wings now.
-A passenger
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