It was on this day – mom’s last day – that I realized how dependent I have become on writing. When I just couldn’t figure out what to do. When I needed to do something, but didn’t want to leave the room. When I felt like my heart was breaking. I needed to write. I guess that’s why the world has so many wonderful journals and collections of letters and other written documents to give us insight into our history. It’s therapeutic. It’s comforting. It’s productive and busy and conversational and heartfelt.
I wrote two posts that day, her last day, that I am combining here. It is personal…perhaps too personal. But this process of journaling has never been about writing the easy stuff or editing out the uglier parts of Alzheimer’s. It’s always been about sharing our story – a story so many others go through every single day in their homes and in memory care facilities and nursing homes and hospitals. Alzheimer’s stole my mom’s ability to function. To remember. To enjoy life. To feel safe. It stole her memories and history and points of reference. Ultimately, it stole her from us too soon.
It is the most vicious disease. That does the most terrible things. That cannot currently be cured. But family is family and love is love and God is good and mom’s story, along with all the other dementia sufferers in the world, needs to be told. Maybe just to assure someone else. Or to make me feel better. Or (in my perfect world) to continue to create awareness, that will create a grassroots movement, that will create funding, that will create resources for caregivers and a cure for all forms of dementia…
Day 4 of Mom’s Journey Home
It’s time. Maybe today. Maybe tomorrow. But it’s time.
Mom threw up a bunch of bile this morning and never woke up. I cleaned her with gloves on. For the first time, I felt like I needed gloves to clean my mother. I didn’t know what it was or if it was dangerous. I’ve never done this.
And I kept apologizing to mom. Which is weird, because my mother would have been wearing gloves the entire time. Mom was a “better safe than sorry” kind of mom. So smart and so practical. Two traits that have escaped me on occasion.
I called the nurse. They have a care meeting and then she is coming by with the RN to see what’s going on. Michele is on her way too. This clean up is more than I can do all alone.
Mom hasn’t said a word today. Hasn’t made a sound. Even when I was washing her face and shoulder and moving her arm around. Just silence.
And she hasn’t opened her eyes. Yet. I did just change her pain patch yesterday, so maybe that’s part of it. I hope so, but that black bile has me scared. And preparing. For the thing you just can’t prepare for…
And it’s Halloween. And my daughter has a party to go to and a costume she has been working on for a week and this is probably her last year to go trick-or-treating…and that’s probably selfish, but if she has to pass, I don’t want it to be on a holiday…
I’m so sad. The crisis nurse is here now and that means the end is near. Nearer than I hoped. Nearer than we want. And I knew it.
Michele came by to get mom cleaned up and she was so docile. Hardly made a sound through all the washing and moving and changing and pulling and combing and lotioning. Just closed eyes and a limp body. So tiny. So frail. And a new pressure sore on her heel. Never a good sign.
So, I pulled up a her walker (which serves as my chair so I can get right up next to her) and the hospital table to finish up the Box Tops that I needed to have postmarked today. (forgive me PTA, but these will be late) and I talked to her. Talked about Box Tops and volunteering at my daughter’s school and about the dates and the counting and the value and the people. Talked about the day. Talked about Halloween. Talked about the past year and a half with her in our home. As part of our family.
And then the nurses arrived. They checked and listened and touched and conferred. And they turned to me with faces full of sad, inevitable news. And I started to bargain. Please, is there anything you can do so she doesn’t die on Halloween? Is there any way she can last until tomorrow when my entire family will be home? Is there any chance she could make it at least until I get my daughter to her Halloween party, because if she passes, she won’t go and she has been looking forward to this for so long….????
There’s no way of knowing. It’s between her and Jesus now. So, I went to get the kids out of school.
They called the crisis nurse. I had no idea what a crisis nurse was. I had no idea there even was such a thing as a crisis nurse. They stay. They come when the time has gotten critical and they stay. They never leave mom’s side. They watch and make notes and translate the death process.
Jesse came about 3 or 4 and he is wonderful. He is calm and pleasant and has a Jimmy Stewart quality about his voice. He has been explaining everything to us. He has been so good with the kids in getting them to talk to mom and be with mom. He has made it possible for me to get Peanut ready for her party without having to worry about watching mom every second.
We went in once she had her costume on and her hair done to show mom. She opened her eyes for the briefest moment and said “oooooh” and smiled. She even reached out her fingers to touch the hot pink tulle. That was perfect. It gave P the okay to go and have fun with her friends tonight. I wonder how much kids can process about the stark reality of what is going on? Especially when mom has been a version of this for more than a week?
Even I’m holding out false hope for a miracle of recovery or a long, lingering goodbye.
My son, who is in charge of passing out candy, came in to give mom a hug and she sighed. That kind of sigh that is full of contentment. And reached her fingers up to touch his shoulder as he held onto her. Another beautiful moment. He cried. He’s not ready either. He has always been her comfort. The gentle boy who sits with her and plays video games and talks and talks and talks and makes her feel included in some magical world of Madden or Mario cart. He even made a Mii for mom on the Wii. She’s “G-Peg” and she’s a hot commodity in the Home Run Derby!
And now we are waiting. The night crisis nurse is on her way. The trick-or-treaters are getting much older and fewer between. The neighborhood boys are tossing a football in the dark. The neighborhood adults are stopping by to offer their prayers and positive thoughts. and a crock pot of killer chicken tortilla soup (thanks Cheryl) that saved my overall well-being. I realize that for the past two days I have existed on $1 drinks from McDonald’s and tiny candy bars meant for Trick-or-Treaters.
I’m sitting one room away from mom. She seems to breathe easier when it is very quiet. I drift in and out of her room as quietly as I can. I want to be right there, but I don’t want to upset the peacefulness that surrounds her. I want her to rest. I want her to be comfortable. And I need for her to wait until I pick up my daughter….I need for everyone to be home to say one last goodbye.
The night nurse is here and she is serenity in scrubs. Her voice. Her demeanor. The way she lays her hands on mom to care and check and monitor. She is honest. Very honest.
The kids are home now. We’ve set up blankets and pillows and stuffies and jammies in the family room. We take turns being with mom. I am trying to explain the unexplainable. They are so brave and strong and vulnerable and gentle and sad. Sophie is keeping watch under mom’s bed. She refuses to leave her side. I can’t tell what or when anymore. I just know that mom is ready…