Hope, Keeping it Real

Lessons In Living Through Dying

As I reflect on the last few weeks and the last ten months of my life, it keeps popping up that as much as I have experienced great loss I have also experienced great gain. I have learned so much in the process, and in the last days of my mom’s time on earth I learned more about living and life than I can completely understand.

I am absolutely still not sure that I have all the words, but in the meantime, I share what I can and hope that someone else will pick up even the smallest nugget that they can hold on to or release; whatever the case may be.

Life is really short. Really. Maybe I have a better understanding of that now more than ever. I don’t currently see that through a filter of sadness, regret or remorse but more through a filter of determination, courage and freedom.

What I learned about the brevity of life, even though my mom made choices that I wouldn’t make for myself, is that when you go through hard, ugly and painful things there’s still a blessing buried in that mess. It’s all about how you choose to see it. Even more so, how we choose to respond to it. I thought I had that concept pretty well mastered, but maybe not as much as I do now. Once again, as a believer in Jesus, I see how He is making all things work together and I am even more convinced that there’s no coincidence in His economy; just divine plans for a purpose.

I have realized after two plus years of hearing the words “new normal” that normal is not my favorite word, but new is a word that makes my top five. New after experiencing death takes on a whole new color and the best part of the new came on this side of heaven.

I have learned a whole lot more about my passion in life, and what picking up the pieces to rebuild looks like. There are more pieces being left on the floor than used in the creation of the next new chapter. That’s something that I have learned and understand at a greater level. New means new. Pieces of the old get added to the mould, but it’s a brand new creation opened up by purpose, plan and through a lot of pain. It’s still a new thing and sewn together by experience, belief and the choosing of one’s perspective and attitude.

I have learned the massive importance of true self care and how to go about that in the most loving possible way. Loving God and loving others is important, right now this other needs to crush the self care in the here and now as well as going forward. And it really just cannot be optimal or set aside for any good reason at all.

I have learned that a mom will truly go through life trying to protect their kids until their last dying breath. I have also learned to speak my heart even when it’s not the most favorable opinion and it’s still okay because my needs still matter as much as they always have.

Sharing all of these thoughtful and experiences seems like the best way through the grief. I long ago stopped saying things like I am fine. I have really learned more about the depth of His love for me. So instead of saying I am fine, how does “I am doing as expected” sound? Although I have also learned that grief does unexpected things at will all day long.

Take whatever you need to from this. If it’s how to see differently I hope you do. If it’s how to let go, I hope you do. If it’s how to find a mustard seed of faith then I hope you do. If it helps you let go, then I pray that you will.

Hope

Staying in the moment when I would rather not

It’s been awhile. It’s been a road. It’s been a challenging season with way too many things happening all at once that’s taking a heavy toll on me in every way possible.

But knowing that God isn’t surprised at all and that He will make all things right brings some comfort and peace sometimes. I am not yet angry with God. Honestly. It isn’t His doing that finds us with the reality of the end days or months of our mom’s life.

I AM angry though. I am fighting not being resentful of her because a good portion of this she did have control over and chose not to change habits or lifestyle. And then there’s the financial choices she made and didn’t which leaves us to figure out to not only pay for her basic needs but her cremation or services when the time comes. In my heart, I know that day is far more near than we would hope it to be, and at the same time I ask God to take her home.

When the anger and resentment comes I am reminded of “thou shall not judge” and have to look in the mirror.

And so, trying to live in one moment at a time is stupid hard when we also have to make decisions that are best for her when there’s so many if/then scenarios in play.

So, I keep praying. I keep trusting. I keep doing. I keep feeling. I keep struggling to accept the love, care, and offers of help in various forms. I forget how to love others and let others love me. I do.

What we are dealing with isn’t uncommon. It’s not any harder than what other families go through. There’s no chapter in the playbook that explains how to deal with making the best decisions possible during a deadly virus outbreak. There’s no chapter that adds in our very special set of family dynamics. There’s just not.

Mixed in with total hell is absolute joy and amazing grace. I have a lot to talk about and yet nothing to say. I’m exhausted and cannot sleep at the same time. I’m in the middle of both/and. We are in the middle of a storm and a miracle.

Whenever I start to wonder what the next day looks like let alone the next few months I am assured that He is already there.

Hope, Keeping it Real

When Everything Stops and Doesn’t Stop All at Once

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.