It’s been a while. It’s been a year and it has been five minutes and it has been a hellacious couple of weeks. In the middle of this, I sure hope you find some encouragement.
Labor Day 5:39-ish p.m. (September 7, 2020) my whole world as I knew it tipped upside down. The phone calls began. The searching began. The calm mixed with panic began. The expecting the worst and praying for the best began.
What do you do when you find out that your mother is lost, delusional and doesn’t really want to cooperate in being located? You drive. Like a bat out of hell. You talk on the phone, text and break all the rules while you communicate with your sister and two different police dispatchers in two different towns.
That night, everything I knew stopped and did not stop. Since then, it has been a nightmare and a blessing all mixed up in one.
We just found out the hard way that my mom has dementia with behavioral disturbances. We just found out she knew something was going on and hid it from everyone. We just found out her financial condition, the condition of her home and health and her mind all at once. To say it has been an overwhelming experience is a total understatement.
A few weeks before things really blew up, I had written her a letter. From the phone calls that I was getting from my sister and all of the things happening, it was clear that something was not right. It was there, and yet we were in denial. But I was not in denial about the fact that after 4.5 years of estrangement, I was now in a place that I needed my mom to know I loved her despite all that had happened between us. If the worst was happening, I did not want her to disappear from our lives feeling or thinking that I did not love, admire and forgive her over and over again. She received that letter, and she knew how I felt and received everything I needed to say to her and all that she needed to hear. What an awesome thing God did to allow that to happen at just the right time. No matter what happens now, she knows.
I have spent more time in my car and eating on the road than I have in my own home over the last two weeks. I have driven a minimum of 125 miles a day, moved her belongings, seen her face every single day, and talked to her multiple times a day in between. And the doctors. And the lawyers. And the family. And the friends.
I have received the incredible blessing of love and support in hugs, gift cards, prayers, texts, phone calls and all sorts of ways. That family of friends that has been my lifeline is right with me holding me up. Holding us up. HE is holding us up.
We have been told by one memory care home that they would love to have her, then decided against it in the same 24-hour period leaving us to scramble to find something else because she was soon to be discharged from where she was being taken care of. She clearly cannot fully take care of herself, and that stubborn, independent, adventurous part of her is still very much there but in a very delusional and unsafe way. I have a lot to say about the care she received before arriving at the place she will call home now. I have a lot to say about the lack of care and compassion and concern and the disgusting truth about some of what has been experienced. I have a lot of funny/not funny stories about what she has said and done mixed in with the terrifying facts and experiences and what-could-have-been as well. All of these things I will wait to tell you about if I ever do. All that matters right now is she is safe, that I have a whole new perspective on many things, and that I am so incredibly sad for the families that don’t have the same supports or information that ours currently does.
I have learned how awesome the brain is and how memories get mixed up and what dementia looks like from the inside out so far. All of this, with my sister and best friend right next to me, and my brother just a phone call away. I have laughed, cried, grieved, mourned, been angry, and been detached all at once. Being all of these things all at one time is so freaking exhausting.
But God. He has provided the exact amount of financial support that I need to have food and gas. He knew this was coming. He has provided financial assistance to carry us through her first month of VERY expensive care while we jump through all of the hoops to get her situated.
He has provided a safe place for her with LOVING people that understand the impact of dementia on families as well as the impact of the stupid effing pandemic that keeps us apart from each other. I have been able to settle her into her new home (mostly) and see her face-to-face without a window, for as long as we want to sit together, and they look the other way when she forgets that she cannot hug her kids right now.
He knew it was coming because there are countless people in my life that have experienced or are experiencing this. We/I have support and people that have gone before to help answer questions. A lot of it. He knew what we would need far before we asked for it.
I tell you what, if I told you all the ways that He has shown up you just would hardly believe it. But I do, because He has.
So, I don’t apologize for not writing or creating. I have been merely surviving and waddling through each day the best I can. The best we can. This has been a team effort for sure. Some of you have been part of this and I don’t have words right now to tell you what that has meant. Thank you is not sufficient.
My prayer requests are that we get to have our mom with us as long as possible; that my brother would get his butt on a plane and get down here before she does not know who he is; that the neurologists would have a clear answer and path for what happens next; and that the path would be wide and smooth for the paperwork and things that have to be put in place in order to provide her the best care possible in the months ahead.
Everything stopped and didn’t stop all at once. Chances are the progression of the disease is going to move forward, not backward. Chances are this is going to be a long road for a long time. Chances are that mom will know that she is loved, cared for and pampered with pretty much whatever her heart desires along the way.