The past two days have been some of the toughest I've had so far in this journey. We had the sleep test and I'll give you the update on that in a little while. First, I just have to vent.
When I first heard the word dementia I pictured long days filled of my mom not knowing who we were or what was happening. While that could be the case someday right now it's not. She's fully present and fully aware of who people are and what is going on. It's really not what I imagined. The struggles to comprehend things, figure tasks out, etc ... those are doable.
What's hard is the constant mood changes, when nothing I do or say is the right thing, when even looking at her makes her cry. What's hard is when I get frustrated and snap and then have to watch her cry for the next several hours because I let my emotions show. What's hard is when she believes with everything in her that something is one way, when it's clearly not, but you can't get her to understand that.
We can sit in a doctor's office together and he can make a statement. I can hear what he says and she can hear something totally different. However, even if you tell her 100 times what he actually said in her mind she goes back to what she thinks she heard. You have no idea what this does to a person. Her truths are really no longer truths. Sometimes her truth is distorted by this stupid disease and sometimes it's just totally made up.
I think this is one of the hardest things. She is my mother. She is supposed to always know better than me. I hear her tell people that I'm in charge and while I know it's because I've made her feel that way, I hate it. She's supposed to be in charge...for a long time still.
Someone talked to me recently about making sure I don't take everything away from her. I need to still allow her to do things and I agree. But it is HARD. Sometimes I'm so tired and exhausted I just want stuff done. It's just all so hard.
I hate that it's hard. I hate this disease. I dislike doctors. I've yet to really meet one that I felt cared about more than just a diagnosis. This is our life. It's hard and it sucks.
Again I feel the need to say everyone has hard stuff. I have a friend who is going through a ridiculous time with her ex-husband (who is a jerkface by the way!). I cannot even imagine what she's dealing with. I have friends facing cancer and health concerns, jobs issues, finances, families ... life is just hard. I think that's what I continue to be reminded of. I in no way ever want anyone to see this blog as a way for me to whine or complain about the journey we've been given. Every one I know could write their own stories of hurt and pain. I never take that for granted. I just want to share my journey. Most days honestly it's more for me than anyone else. It helps me process and deal and refocus. But I also hope that someone, anyone might find hope in what I write. Because at the end of the day no matter how much this sucks and how much it hurts ... I still have hope.
I was listening to this song this afternoon as I was driving us back from OKC. (On a funny note, mom had dozed off. This week has been EXHAUSTING for her. She had dozed and I hit a bump and her phone fell against the door and then to the floorboard. She jumped awake hollering at me about what did I hit? Can't I be more careful? I just smiled as she closed her eyes and nodded off again!) Anyhow ... this song came on and I don't know. I just needed to be reminded of this truth: He can take broken things and make them beautiful. I feel broken right now. I'm beat down and defeated. I feel like everything I did this week so far was wrong. I just feel broken. But there is such beauty in this song. I'm going to post a few lyrics but then I'll include the video. It's good stuff if you listen I promise God'll meet you there.
I'm better off when I begin to remember
How you have met me in my deepest pain
So give me glimpses now of how You have covered
All of my heart ache, oh with all Your grace
Remind me now that you can make a way.
That your love will never change
That there is healing in your name
That you can take broken things
and make them beautiful.
Real quick here's the update from the sleep test. During one hour mom stopped breathing or had her airway obstructed 19 times. So she now has an adorable pink cpap machine to sleep with. Her iron was extremely low and that can be a source of active dreaming so we are going to start some supplements. We were also on a medicine that could cause acting out of dreams, so we are weaning off that. Then we are going to give it two weeks and see if sleep improves. If not we have a prescription to help with the REM Sleep Behavior Disorder and we will try that then. We are waiting on a call back from the Mayo Clinic, OU Medical and Texas Tech Neurological Center. Pray God provides a doctor who wants to be proactive versus passive. I'll write more about that later.
Thanks for letting me vent. Here's my prayer for me and for you tonight. Love you all!
You say that You'll turn my weeping into dancing
Remove my sadness and cover me with joy
You say your scars are the evidence of healing
That you can make the broken beautiful.
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