Welcome to my new normal… I lost my mom to liver disease on August 23rd. Ironically, she had never had a drink of alcohol in her life. The week preceding her death was filled with things I thought I would never have to do. Some I’d never even considered possibilities and many I should have prepared for but simply had not.
In the grand scheme of things, I’m lucky. I should have lost my Dad the same week I lost my Mom and very well could have. He totaled his 2014 Harley-Davidson Street Glide on Friday morning and was taken by helicopter to the nearest hospital. He was wearing his helmet, which he did every time he rides thankfully, and sustained only minor injuries. ‘Minor’ considering he flipped his bike end over end twice, landing on his head both times. They kept him overnight for observation which was to be the first in a long chain of events that week, the worst week of my life. I believe things happen for a reason; and that there was a reason for this accident especially.
Mom admitted to me that night that she didn’t think she should spend the night alone – something she did five nights out of every week while my Dad was at work. It was a first and heralded the beginning of the end. My siblings and I rallied together to be with Mom all weekend and get Dad home from the hospital an hour away. That weekend I bought adult diapers, helped Mom shower and transfer on and off the toilet – things this daughter had never prepared myself for. We all stepped up and did what needed to be done while I silently wondered if worrying about Mom was why Dad had wrecked his bike. Especially if this had become his normal.
Mom had been sick for many years – diagnosed for four but symptomatic closer to ten because she was a stubborn nurse who refused to see a doctor regularly. We had watched her decline slowly the last couple of years but she was still living at home. She didn’t drive anymore but Dad would take her religiously for her hair and nail appointments. Most weeks they would go to dinner with us on Friday nights and still saw friends often.We’d even gone camping as a family three weekends before. By Saturday morning we all agreed that with Dad hurt and in a neck brace for the next ten days he was going to need help. Help none of us were equipped to offer. That weekend I helped coordinate with her doctors to get emergency orders for home health care, we all kicked into cleaning and de-cluttering mode to make room for what we anticipated was a need for a hospital bed since she could no longer get in and out of her own by herself seemingly overnight, and we met with a nurse to assess Mom’s current health.
The worst side effect of liver disease is the build up of ammonia in the brain called encephalopathy that presents as memory loss. That weekend there were several times Mom would look at us and it was like there was no one looking back from behind her eyes. It was much worse than we had been experiencing with forgetting how old she was or how long she’d been married or not being very good at lengthy conversations. All of which we’d been dealing with for at least the past year. By Monday morning, she couldn’t walk by herself and there was evidence of internal bleeding. We headed to the emergency department at the hospital. Mom never came home. They stabilized her and did everything they could but her kidneys had also failed and there was nothing anyone could do to fix it.
It was a week of emotional turmoil as my Dad leaned on us to help make the hardest decisions a person can be faced with. Would she want to be intubated? Would she want to be kept alive on a feeding tube? Would she be okay with spending half of every day for the rest of her life hooked up to a dialysis machine to keep her alive? Would she be happy if she had to go to a skilled nursing facility and not be allowed to live at home anymore? She was never conscious enough to rationally help us make these decisions. Heart-wrenching and heart-breaking. In the end Dad knew enough about her wishes to make the hard choices. We withdrew care early Saturday morning. She was gone by the evening.
Someone said to me right after it happened that nothing can prepare you for losing a parent. So true. No matter that we all knew it was a possibility for years, it still hurt like a bitch. In the weeks since her death I’ve come to focus on the tender mercies that came with the heart-ripping sadness and give me comfort.
The first and most obvious mercy was not having to bury both of my parents in the course of a week. If things had turned out differently that Friday morning, a morning that started the way so many others had before with Hubby and Dad heading out for a day trip on the motorcycles, we would have.
Even bigger, the realization that Mom went out exactly as she would have wanted it. She tried in April to make me promise that she’d never have to go to a care facility or a nursing home. A promise I told her flat out I couldn’t make because none of us were equipped to care for her if it came to that. As it happened, Mom lived out her days at home with the love of her life until she couldn’t and then went swiftly from this life to whatever lies beyond. She never had to face her greatest fear in life – living without Dad. And she was surrounded by the thing that made her happiest for an entire week before she passed – her family. I will cherish every day I spent with her in the hospital that week and be forever grateful for a job flexible enough that I was there every day.
So many of the events that week seemed serendipitous. Tuesday night all the grand kids came and spent the evening. It was difficult to watch my own children struggle both with understanding what was happening (Baby Sister) and with knowing exactly what might be happening (Big Sister). There were near-hysterics involved but in the end all of them were able to tell her everything they wanted or needed to say – and heard Grandma tell them she loved them back. Had we waited another day, they wouldn’t have had the chance. She was transferred the next afternoon and children are not allowed in the ICU.
Many people warned me that the funeral and all the things leading up to her burial were going to be so rough. Certainly they were difficult – especially speaking at the funeral – but nothing was as hard as watching her actually pass from this world. I cling to the memory of watching her use her last ounce of breath to tell us she loved us and to kiss Dad over and over until she didn’t have any more strength left. Such a tender mercy, having her still conscious enough for that final goodbye.
I watch people tread lightly around my grief and part of me is surprised there isn’t more of it in evidence. But the reality is, we slowly lost Mom for years and there is comfort in knowing she isn’t suffering anymore. It doesn’t mean I didn’t sob all the way home after stumbling on an old voicemail from her today. Because I did. Hearing her voice and calling me her pet name were things I hadn’t even considered how much I would miss. I thank my brush with death and resulting shift in perspective of not taking people or time with them for granted. It, too, must have happened for a reason. I have very few regrets because I spent as much time as I could with my parents in Mom’s final year. I will miss her everyday but I know she is in a better place – wherever that may be.
I’ve said it before since that fateful day of my pulmonary embolism and I’ll say it again. Squeeze those you love and make every minute count. Tomorrow is not promised. Even if you know the inevitable is inevitable, you can never really be ready. More important, have the difficult discussions with those you love about what you would want if you ever find yourself in a situation requiring life support and unable to make decisions for yourself. It was the single worst thing I’ve ever had to do in my life. Trust me that you don’t want your loved ones not to know at least the general ideas you have on death and dying.
Much gratitude and love to those of you who make up my village – who brought food and gifts, took my kids, sent cards and flowers, hugged me, got me drunk, came to the services, called, sent texts and Facebook messages and in general got me through this as a collective. I couldn’t have done it without all of you.