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!

Wednesday, August 2, 2017

Bed Alarms, Food and The Burning Bus

I wanted to write another post to get you all up to date but I'm so tired that it's hard to write intelligent words in sentence and paragraph form. My thoughts are more like... bed alarm... food... sleep...

Mom is not strong enough to stand up without help. We have a wheel chair for her and a bedside commode that reduce the distance she ever has to walk. However, she also is mostly out of it so she will stand up for random, unknown reasons and try to get wherever she thinks she needs to go whether or not we're there to help. After a fall the other night, hospice provided us with a bed alarm, I refer to it as the "tattle tale". It's helpful in that it will allow us to sleep nearby or go in another room and know if she's trying to get up. The downside is that the bed alarm goes off all the time because she's trying to get up.

Our wonderful hospice nurse explained it as "terminal agitation". People who are in pain, nearing the end of their life will get random bursts of adrenaline that allows them to be much stronger than their physical condition should allow. Trust me, I am probably double my mom's weight at this point and if she's determined to get up, I cannot keep her from getting up. Last night it was because she was on a bus that was on fire. I am not sure when the bus caught on fire because when Angie was sitting with her earlier yesterday, it was just a plain old bus, not a burning bus. In my sleep deprived, pain addled brain I kept turning the burning bus into a burning bush and trying to make some biblical connection. It wasn't a bush though, it was a bus.

This is all sweet/sad/exhausting at the same time. We're so grateful for these last glimpses of her imagination and creativity and personality. We're grateful for every tiresome, exhausting minute. My dad has the worst of it because he is with her the most. I try to be there to help as much as I can but the harsh reality is that my back didn't miraculously become healed because my mom got sick. I've supported her tiny body far more times in the past week or so than my fragile spine can handle. I'm in a world of pain... there are times when I just literally canNOT function any longer.

There are also times that it becomes mentally draining. She gets stuck in a loop where she will repeat the same thing over and over and over again. We try to reassure her... like this evening when she was SURE that Pop was giving her the wrong thing to drink. No matter how many times we assured her that all that was in her cup was water, she kept telling us it was the wrong drink. The other day she stood facing the bedside commode for ten minutes answering the imaginary phone and trying to get me to come to the phone. I kept telling her I had it that she could go sit down. Eventually I think she just gets worn out.

She does sleep. Lots, thank Heaven. She's on a pretty stiff cocktail of medications that make her lethargic. As much as we enjoy these last glimpses of her personality, we also enjoy the quiet moments where we're not having to convince her to sit back down every thirty seconds.

We've had a lot of visitors, both friends and family and medical personnel. There's a knock at the door many, many times a day setting Oscar the dachshund off in his deafening barking alarm. We're grateful for the love she has been shown and the wonderful medical care she's receiving. We're also quite grateful for the many, many amazing meals that have been brought for us by the ladies from the church. We are eatin' good lately. Pop and I will have to go on a crash diet once this is all over. Honestly, I may just hibernate like a bear for six months or so, live off the fat of the land for a bit. It seems like every food delivery comes with batch of brownies. I've sampled so many different variations of brownies, each better than the last... that I could write a brownie cookbook. (not complaining, keep them coming!) It has helped so much to not have to think about what we're eating for dinner... or lunch... or breakfast.

As an introvert the constant parade of folks does wear on me. I'd never turn away a single one because it would be selfish to not allow people to pay their respects to her for both her sake and theirs. I do occasionally disappear to my space to recharge my batteries a little bit. People who come here are sad for her and for us. It's an obviously difficult time and her appearance has changed as she has lost so much weight. I recognize the shock in peoples' eyes. I'm sad for them, I grieve with each and every one even if I can't allow myself the luxury of tears right now. There is too much to be done. Crying triggers migraines for me. I have to pace myself. There will be a lot of time for tears soon enough.

Pop and Bubba (does that sound redneck enough?) went down to the funeral home the other day to make her final arrangements. She will have a viewing and then a funeral service and then be cremated. The only thing we weren't sure about was whether to purchase a plot for the inurnment (putting the cremated remains in the ground) or if we would keep/scatter her ashes. I'm on Team Scatter. I don't see a point of a fixed spot in some sad cemetery. We are her living legacy and we will all continue to go out into the world honoring her far more than a piece of ground with some plastic flowers. I'm also not a fan of the whole viewing process. I can't stand when people say, "doesn't she look natural?" Nope. Not at all. She looks dead. I don't want to see her dead but I'm sure I will have to as I'm sure I'll be here when she goes. My favorite funeral flowers ever were in the shape of a phone with the words, "Jesus called and Mawmaw answered". Too morbid?

So I guess that's about it. My brother from New York will be here this weekend with his wife and baby. We're giving Oliver a small birthday party here on Saturday. There will be a bunch of us here and we have to eat and the babies always made mama so happy. She always worked in the nursery at church and ran an in home daycare. Then in her empty nest days she volunteered at the hospital with newborns. Having a party in the midst of all this may seem weird to some but it makes sense for us.

The days tick by and we just keep doing what needs to be done. We will do what needs to be done until it doesn't need to be done any more. Austin's still looking for a job. He's been helpful and it's been a relief not to have to take him to work and pick him up every day. I think that twice a day commute would have done me in. God's timing is perfect. He spent today getting my back porch cleaned up so Finn (my nephew) could play out there without hazards that Cosy is used to ignoring... but Finn may not be. We also set up a section of my living room as a play room and got the toys organized. It's my little happy spot for when the house feels too dark and sad.

Time for me to catch some sleep so I can sit with mom in the early morning while pop does his devotional. I'll try to keep y'all up to date. Thanks for your kind words and prayers and love. I feel each and every one of you holding me up, holding me together. Love and hugs back to you!