My People

My People
My matched set of grandchildren - Oliver and Cosette

Thursday, August 24, 2017

My Mom's Death

I love reading birth stories. I can fall down a rabbit hole of birth stories and get lost for hours. In the past few weeks I have found myself more focused on death than life and have been really curious about those final days and hours. Honestly, if law enforcement got hold of my laptop they might start looking for a body... with Google searches like, "signs that death is near"... I haven't Googled "death stories" but I'm wondering if there's the same type of rabbit hole for death stories. I'm not going to look but if there is, I'll add one to it.

These past few weeks have been filled with so much emotion; raw, personal, really deeply introspective stuff. I would never want to relive this time of my life but I do feel to some degree that it's appropriate to share in this format. I hope you won't find it disrespectful but will get a glimpse of the wonder and magnitude of it all. I hope that those who loved my mom and were touched by her time on this planet will understand what an honor it was for me to be with her in her last days. Or maybe, you've googled, "signs that death is near" and maybe this death story will be helpful to you as you travel this road with someone you love.

I last left this story about three weeks ago. I've posted some stuff on social media since then but time has been limited and I've lived in a constant state of pain and fatigue in that time. Yes, Austin found a job... it's at a 140 year old General Store in our area, working in the deli. It's everything that his last job wasn't and nothing that it was. He's doing ok and I'm grateful.

My mom passed away on August 18, 2017 after a seven year battle with carcinoid syndrome that began with a neuroendocrine tumor in her intestines that metastasized to her pancreas in November 2015, and then last August it was found to be in her blood stream. I won't go into a lot of details on this type of cancer because I want to be specific about our journey not about the medical stuff. The important things to know are that it was the best type of pancreatic cancer to have which meant she survived longer than many people do with pancreatic cancer (although it was not even two years) and that this neuroendocrine type of cancer affects your serotonin levels in your blood which is why we lost mom COGNITIVELY about a month an a half before her actual death. For all intents and purposes we began to grieve the loss of relationship with her on July 4th of this year. We had glimpses of who she was after that but by and large she was... out of it... to put it plainly... from that point on. In many ways I feel like we are already a month and a half into the grieving process, honestly.

Because of her cognitive decline, the task of caring for her was, in many ways harder in her final weeks... but she was less aware of her situation which I hope made it easier for her. She lost her vision at some point in the last week or so. My dad became aware of it sooner than I did (and didn't mention it to me until I mentioned it to him which will tell you a little bit about how we processed things in those last weeks!). She developed a horrific patch of dead tissue on her tailbone which was probably the hardest thing for me to deal with in that I knew that every time we touched her (moved her, cleaned her...) it had to cause her terrible agony. Her skin around that dead tissue was literally like tissue paper and would just pull open with the slightest movement. Once that happened we no longer attempted to help her get up and down to the bedside potty. This was easier for us in some ways because by the last week she was unable to support any of her own body weight so that even though she had lost a good deal of weight... she was still very heavy to move, especially with my back problems. This was harder in that we had to change her which was really, really humbling. If you think it's hard to change a squirmy baby, it's a thousand times harder to change an adult who has no understanding of what you're doing.

In the last week or so of her life, the last six years or so of my life began to make more sense. If I had never had the back problems that disabled me, I would have been working, probably full time, and would not have been able to assist my dad in caring for her. I might have been in a relationship that would have been compromised - at least challenged - by the time I spent caring for mom. I would most likely have not been living in the same house and therefore around to lend a hand whenever Pop needed.

As the only girl in the family there were things that I chose to do so as to spare my brothers... but more importantly to preserve my mom's dignity to the extent that I could. This is true for the last month and a half of her life but much more so in the final week. There were also certain medications that my dad was less comfortable giving her that because of my own battles with pain, I had less reservations about. If this life... this life with chronic pain and the disabilities that has brought me... brings about no other good than what this Summer has taught me, then I'll still gladly bear that cross. All things DO work together for good for those that love the Lord and are called according to His purpose (Romans 8:28). Sometimes we never know what that good is. I will always believe that it was for this very season of life that we just passed through. As it says in the book of Esther, "for such a time as this".

We knew, once mom had developed the patch of dead tissue, that time was growing very short. Our hospice nurse (best hospice nurse that we could ever have hoped for!) had been working with us to interpret symptoms and signs as mom got closer to death. We could see her obvious physical decline. Her blood pressure was lower. Her feet were swelling and began to be discolored as her heart wasn't pumping hard enough to circulate her blood. She was communicating less and when she did try to talk it was very hard to understand her. Her food and water input was almost down to nothing, although we certainly gave it our best effort, even dropping syringes of water into her mouth. Last Wednesday, the nurse had said we probably were in the last 48 hours. While I was not anxious to lose my mom, I would never have wanted her to continue with the quality of life she had in the last month of her life. I believe in Heaven, I believed she was bound for Heaven and therefore I had hope that while we would miss her for the rest of our natural lives we would be reunited with her someday.

Many of you know that there is a sibling in our family that has been estranged from the family for the past several years. Many people have asked if we reached out to him in these last few weeks and the answer is, yes, we did. He has known about the cancer for the past two years and had chosen not to attempt to contact mom (or any of us, to my knowledge). I didn't really have contact information for him (they even moved without giving us a forwarding address) but he and his wife own a dance studio that has a website so I used the "contact us" option on the website to let him know that there was not much time left if he wanted to see mom. He chose not to. We notified him of her death and he said he was praying for us but he did not attend the funeral. We all have to live with the choices we make in life. Mom asked me at one point in those last weeks to "forgive _____". There's nothing to forgive. I harbor no bitterness toward him, only sadness for what he has missed out on and what his children have missed. Nobody ever loved a grandchild more than my mama... and I say that as a very involved, obsessed Nana... but I'll always be sorry that those nieces and nephews didn't get to know her as my children and the other grandchildren have.

Last Thursday, knowing that mom was probably in the last days of her life... but understanding that it has been a marathon, not a sprint, we went ahead with the plans for the day. Pop played golf... I spent time with Cosette while the sitter (who was also amazing) was with mom. This has been such an emotionally intense time. Two luxuries I always allowed myself were sleep, every night for at least four-six hours (which is not enough for a chronic pain patient, trust me) and the opportunity to get out of the house when it was practical. Bette cared for mom two to three days a week. She helped out with the laundry and basically offered to do anything and everything we needed her to do. She was great emotional support and just honestly gave great hugs. I tried to stay accessible while she was with mom, especially if Pop was playing golf and needed to completely disconnect, but I had no reservations about leaving mom completely in her care. That's what I did that day and in retrospect, I think those were the right choices for us. The following days were emotionally brutal and I'm glad we had time to catch our breath before then.

Friday morning I took Austin to work and went to the bank to deposit a check for Pop. I got to the bank five minutes before they opened and there was a line of people outside. I just thought... no way can I deal with waiting patiently in line... and I went home without going into the bank. When I came in the house, the nurse tech who gave mom her bath three times a week was with mom and let me know that mom had been struggling. She was panting hard, like she had been running and could not catch her breath.

From that point on I stayed with mom except to go to the kitchen to draw more medications into the syringes that we used to put medicine in her mouth (as she could no longer swallow pills). The nurse (whose name, ironically, was Heather) was in touch with the hospice doctor who kept advising additional medications to try to ease mom's breathing. Nothing helped. At some point Heather told me that anyone who needed to say goodbye needed to come. I sent texts to all the family members but we were all ready for her passing. My oldest brother came to the house and he, Pop, Heather and myself just stayed with mom, trying to calm her and reassure her. This lasted for almost two hours. Two hours of that really hard struggle to catch a breath. She fought every second of the way. Pop sat beside mom on a stool we had by her hospital bed until around 10:57. Mom took a deep breath and then stopped breathing. I turned to Heather and said, "Is that it?" and then mom again started panting hard again. Pop stepped aside and I took his place beside her. I held her face in my hands like you would a small child, trying to get her to focus and calm her breathing. I just began to tell her things like, "it's ok to go. your work here is done. you can rest now." A single tear rolled down her cheek and she took her last breath at approximately 10:59. I overheard Heather say, "she's gone" and then all the emotion in me just tumbled out. My sister-in-law Angie had come into the room JUST THEN and put her arms around me. I didn't realize until last night that she had not been in the room earlier... which is crazy because I knew at 10:57am who was there and I knew Angie wasn't there yet. Angie didn't know when she came in that it had literally just happened as she stepped in the room.

Anyways. The hospice nurse arrived and the nurse tech left. Things were happening. I sent texts out to the family. My brother in New York had wanted to be notified in person so the plan was to let his wife know so that she could go to his office and let him know. Austin wanted to know in person so I had to wait until the end of his work day. Angie went to her daughters' schools to tell them in person. I called my son in South Carolina and told him. We tried to keep it off social media until we had notified every family member (which didn't exactly happen but fortunately, Austin was in a place where the internet reception is poor). It was a flurry of activity but not really rushed, if that makes sense. We had sort of rehearsed and discussed this process over the past month or so and knew what needed to be done, in the same way you make sure you know the best routes to the hospital when planning for a birth. At some point I needed to introvert so I went downstairs and stayed downstairs until the men from the funeral home arrived to take mom away. Pop handed me the dog and shut my door but... I just needed to have the closure of seeing her leaving the house so I left the dog and went around the outside of the house to the upstairs and went in the house. Pop cautioned me, "I don't think you want to go in there"... because by this time about an hour and a half had passed... but I did, just briefly. Once the undertakers left, I went to see Cosy. I just needed to touch life. I played with Cosy for a few minutes and then came back home to wait for Austin to call to let me know he was off work. It was another THREE HOURS before he got off work. At some point I sent him a text and asked how much longer he was going to be and he says he knew then that she must have died.

And that was it. I'll write another post about the things that have happened in the days since she died. There is a whole lot of emotion involved and I think I've learned a few things that might be helpful to others. Thanks again for all your love and support during this time. I feel like I've just been wrapped in a warm hug constantly (in a good way) and I appreciate that more than I have words to say. Love and hugs, as usual!


Anonymous said...

I envy you in a sense that you were able to ultimately be there and care for your Mom when she needed it most and probably the toughest time for you. At the same time, I don't know if I would be able to do what you had to do. I'll pray for you, your siblings, your dad, your children and their children, and our family..... Rik Pennington

monica said...

Heather, I am so sorry for your loss. I lost my Mom last October under similar circumstances so I truly relate.
I hear no quilt in your words and there shouldn't be. You loved your Mom and you were there. Maybe she couldn't express it but she knew that.
I hope your Dad is doing OK. I hope you and your brothers and the grandchildren will carry on your Mom's legacy. I know she was the best for all her children and theirs.
I hope I'm making sense here & I do not mean any disrespect if I'm coming off that way.
Lots of love and prayers to you and yours.

Anonymous said...

Dee from Tennessee

Big hugs and a special hug for your dad. My mother passed away five years ago this week, and I thank God for His mercy and grace .I thank
God that He allowed me to be holding my mother's hand as she went to sleep and took her next breath in the presence of her LORD, Jesus
Christ . She knew she wasn't alone . My only sibling was waiting on her. Prayers for you and all , especially your dear daddy . God bless from the hills of East Tennessee .

Rose S. said...

Dear Heather and family,

My deepest condolences to you and your family on the passion of your sweet mama. No words can ease the pain and sorrow you are feeling and will for some time. Just know you are surrounded by a lot of love and light.

Peace and prayer.

Annie said...

I offer you my deepest condolences. I have been reading your blog for so many years. Your mom was a very special woman. Be strong like we know you are.