That seems to be the sort of contradictory news this week. I (David) arrived Thursday morning and she said to me from bed, “I’m not doing well. I’m just not myself.” She got up to have some breakfast with me. As everyone says, she looks great: her skin tone is good, she’s quick with her thoughts, moves well and quickly. I noticed her penmanship was excellent — so very good motor control and good vision. But she had a small bowl of cereal and complained that she had no appetite. As she sat at the table, she paused, breathed intentionally and complained about feeling short of breath. “This sucks,” she said. Mom climbed into the recliner and slept until after noon.
We met Karen at the oncologist’s office to discuss Mom’s decline, which Karen and Mom agree started last weekend. But ironically Mom’s vitals are great. Good blood pressure and resting oxygen levels are 96%! Pain is sporadic, most recently in her neck and shoulder, but usually two tylenol is sufficient. Mom’s MRI of her neck region from Wednesday showed additional metastasis in her bones, but no fractures or compressions threatening her spine. Mom hops up on the exam table without a thought. She’s still quite strong.
However, Mom’s left lung isn’t working well at all — that’s the one with the tumors. Monday’s test showed her lung capacity was way down. And Mom will struggle with mini coughing fits throughout the day struggling to expectorate.
Dr Heyer understood that breathing discomfort is the primary concern and suggested that she try oxygen. He didn’t recommend further chemotherapy because the remaining drug option had only a 5-10% chance of being effective, can cause lung complications and would be weakening. And he didn’t recommend radiation because pain was mostly manageable.
Mom again repeated that she just didn’t feel like herself and suggested that it might be time to call hospice, which the doctor agreed was a good step. There’s really no downside considering she doesn’t have any plans for curative treatments. We don’t want to call hospice at the 11th hour and it makes sense to focus on comprehensive palliative care at this point — even if Mom is mostly self-sufficient and in relatively good shape. If she improves substantially then she can drop hospice. Regardless, she’ll still meet regularly with Dr Heyer and her pulmonologist, Dr Williams.
So the order was placed for hospice, which is a big milestone and feels premature if you read it as a death sentence. Instead, I think the three of us all agree that it feels like the right next step to be prepared for the future and to best address Mom’s comfort today.
I drove Mom back to her apartment and after some visiting Mom said reluctantly that she should probably get some dinner. She repeated that she had no appetite. We walked to the dining room with her new walker for the first time. It’s not a long walk, but Mom stopped twice to sit for a few minutes and catch her breath. Once we arrived, she stopped to greet and chat with numerous friends and introduce me to many residents. And then she sat down and had a big meal of salad, fruit, a “delicious” omelet, pumpkin pie, ice cream and coffee! Oh, I forgot that she had squash soup in her apartment two hours earlier.
So she has no appetite, but when she’s with others and the food is right in front of her, she seems to have little trouble. I suspect that she eats much less when alone because she doesn’t have the energy or inclination to get food.
Anyway, as is typical, evenings mean a resurgence of energy and she was up until midnight still trying to catch up on emails. I finally kicked her out of the guest room where her computer sits so I could sleep!
Ann's Hummingbird
David, Ann and Karen,
thanks to Daivd for this latest update and to all of you for so generously sharing this sacred part of your lives with so many. it’s beyond holy to be in this Waiting Room with you all.
for what it’s worth, i honor you all in your choice to connect with hospice at this point. energy – Ann’s and both of yours – needs to be directed at The Most Important Thing. now ya’ll can do that.
i continue to grateFULLy celebrate and hold you all in my heart.
Hospice is a wonderful way to receive support. I took the training several years ago. There are times when someone uses Hospice and then does not need it anymore. Still praying for comfort, healing, strength, ‘n peace each day… Tnx for keeping us updated and know that we are sending you light and lots of love…
xo, Jan
It’s a wise threesome talking over next steps. Ann, when David’s gone, I’ll come in the late afternoon and sup with you. You’ve always been an end of the day kind of gal….and into the night!
Thanks so much, David, for giving us this news about your Mom’s condition. Cheers for all the strong, healthy parts of her. She is having such good care from the doctors and especially from you and Karen. I think hospice nurses are angels on earth. Glad they will be attending to her needs.
Peace, David,
Allison
David,
Thanks for the update! Your mom is a people person and responds to others so very well. Guess you’ll just need to have her place filled with people at all times;)
Ann- be well…our thoughts and prayers are with you as we journey to Atlanta and the kids.
So good to hear from you, David, and happy that the three of you have time together. I can imagine it was a difficult decision to ask for hospice referral — but hospice is so good at pain management. Hopefully, Ann will feel more like her “old self” under their care. Continuing to hold all “Kulps” in prayer.
I won’t be present for your mom’s Shalem prayer group next week. So, in my absence, here’s a poem by Rumi to share with your mom —
“We are the mirror as well as the face in it.
We are tasting the taste this minute
of eternity. We are pain
and what cures pain, both.
We are the sweet cold water
and the jar that pours.”
Blessings. Jayne
my mom had the best hospice nurse. just this week my sister was quoting a bit of wisdom that this special nurse had imparted ~7 or 8 years ago. i hope you’ll find great folks to help w/ pain management and other practical issues as needed.
sending love and good energy today and every day. your name is spelled out on our dining room table, so every time i pass through (many times each day), there are the letters ANN, reminding me to send good energy and prayers yet again.
blessings,
a
I’m grateful for your post, David, and so glad that you can be there with your mom and sister. Your decisions seem wise and caring.
We were speaking of you, Ann, at lunch today at Shalem, commenting what a wonderful, wise person you are. We send our love and prayers.
Leah
Thanks for the update, Karen and David. Love and hugs to all of you. It sounds like you are handling the situation as well as can be expected. You are in my thoughts and prayers.
Betty
Thank you for the updates Karen & David. You write so honestly about your Mom. Sorry to hear of her decline and glad you both are near by. Your Mom was a great hostess(and your Dad) when we visited her and always enjoyed her company. And still do.May God give you peace and understanding as you go together thru this as a family. Love you all.
Thanks for the update. The three of you are in our thoughts and prayers. What a blessing you two are to your mom and the rest of us!
Much love to all of you,
Tom & Libby
Thank you so much for the newsy update. We continue to hold all of you in the Kulp Family in our prayers. You are a wonderful family who come together to support one another in a way that is SO admirable. We know that Hospice will be a big help in addition to your other medical advice. You are all held tenderly in prayer. We send you love and prayers.
Thank you so much for sharing these moments with those of us who have such a deep love and appreciation of Anne!
Dear Aunt Ann, Karen, and David,
We have so appreciated being kept up to date on what is happening for Aunt Ann. We love you all and think of you often, both with memories of wonderful times in the past , and with concern for how you are doing in the present. You are all in our prayers.
It is touching to read the details of the day. Thank you, David, for your observant eye and loving heart. I trust that engaging the help of hospice will give you, Ann, all the support you need to manage pain and stay comfortable and be accompanied along the next part of the journey. Prayers for all of you.
Blessings to each and all of you.
Your family is such a powerfully loving one. What a great source of strength and comfort your presence is!
Thanks David.,…updates are so helpfull,,,such a wise desicion to call Hospice….your Mom is a wise women with wise children….hugs to you all XXX….Nancy