07/25/20 --THESE PICTURES MAY BE HARD FOR SOME PEOPLE TO SEE.
I’m just going to be honest about it. I’m mad at God.
I’m religious. I would consider myself a woman of faith. And I think you can be both a Believer and angry with God at the same time.
But I would be lying if I said this experience hasn’t rattled my faith.
Case and point: I am quite literally watching my mom slowly starve to death.
First, let me explain one thing.
It’s not like we/they are withholding food. She’s refused to eat or drink completely for 5 days. And by refused, I mean she’s basically in and out of consciousness. So she’s either not interested and closes her mouth… or you could put something in and it’ll just fall out. Prior to not eating the past five days, she ate maybe 3-5 baby bites of food a day for 2-3 weeks.
So yes, she’s essentially starving to death.
And because she can’t swallow any longer and we’re afraid she’ll choke to death… there’s really nothing we can do about it.
I can also see my mom's hip bone poking out and realized today I could see her entire pelvic bone. I actually cropped that out because I'm tying to open your eyes and make you aware, but not at the expense of exploiting my mother's vulnerability or making you sick.
A month ago she weighed 94 pounds. I'd estimate she's closer to 80 pounds now. To give you some perspective, before her diagnosis she weighed about 190 pounds.
I really debated sharing these pictures, but I’m doing so because:
1. I think it’s extremely important to share the side of dementia you don’t always see. It's brutal. But it helps drive awareness and understanding, which often leads to an increase in research and funding and hopefully eventually a cure.
2. I think there are a lot of people that can relate to suffering (dementia or otherwise) leading to the testing of their faith.
3. My mother and I discussed early on four years ago when she was first diagnosed, that if she was going to endure this horrible degenerative disease—we were going to tell her story and make her experience count for something.
WHY DOES GOD ALLOW PAIN & SUFFERING:
I believe that everything happens for a reason. I really do. And I get that maybe somewhere, somehow there must have been a reason for my mom to go through this.
Perhaps the only reason for our brutal journey is to inspire and encourage you? I don’t know.
In that sense, MAYBE I can find a very small place in my heart to grapple with why she has to have dementia in the first place.
But I don’t think I will ever understand why God is allowing this kind of suffering to continue--especially at this degree... for this long.
As a Christian, that’s hard to admit.
Can I admit something else? I know this is not how God works, but regardles, every-time I go through some sort of big suffering, I cannot help but scan my brain trying to think of what particular situation is this is payback or punishment for.
Lately I look at her. I see her starving. I see her gasping/wheezing/choke-coughing for air. I see the pulse oximeter reading oxygen levels that are so low she’s basically going brain dead.
WHY GOD?
Why does she have to experience this?
Did I do something wrong?
I do not have the answers to this, but I did some digging and found this article to be interesting. I’ll drag over the most interesting points and link the website:
- Suffering produces intimacy with God (Job 42:5).
Oddly, I would agree. I mean I went to a Bible college. I minored in Biblical studies. So...true, I guess this experience has led to more prayer on my part.
- Suffering equips us to comfort others (2 Corinthians 1:3-5).
I agree with this too. I've never experienced this level of empathy before. I definitely sympathize better with others because I understand how much it hurts.
- Suffering refines us.
- Suffering produces growth and maturity (James 1:2-4).
- Yes, I would agree I’ve grown tremendously on this journey.
- Suffering conforms us into God’s image (Romans 8:28-29).
I do understand these points. But like many of us, I’m still left wondering:
If God loves us, why do the people that we love have to endure something like this? Maybe this suffering has allowed me personally to grow. But what good is coming out of this for my mother?
That is my question.
If there is any solace in this, it would be this. I hope and pray that our experience, my actions, our care and love for each other as a family, is a testament to our faith. And yes, sometimes faith can be rocky but I think it's good to question your beliefs.
*****
Please keep in mind I don’t personally work in an assisted or memory care facility. I don’t know how they do it. I see it with my mom, but that’s it. I don’t see it over and over, day in and day out. Five people have died in her facility in the last five months. My mom’s about to be number six.
These images are a reminder that caretakers HAVE TO do more to protect their mental health.
This is a topic I’ll discuss more on later. Including what I implemented and changed in my own life to be able to cope with the frustration of these kinds of situations in life.
I hurt for you. My Dad had early onset Alzheimer’s at age 56 and died at age 69. My Mom had late life vascular dementia and my sister at age 74 is in the throes of Alzheimer’s. So I do know the pain. And at some level I see the COVID as a release from the horrors of dementia for those who have zero quality of life and truly want to be released from their failed bodies. I don’t mean to sound cold and not every COVID death involved these underlying health issues, but for those that did, it was actually a blessing. The circle of life. I wish you and your sweet Mom all the best an…
My heart goes out to you and your mom on this painful journey. Praying for a peaceful passing for your mom but that you know that all of us, who have been with you, Is here for when you need to cry, weep and laugh too. Katie give yourself time🙌🏻
Katie, you know my heart is with you. All the verses you cited above make perfect head sense. You are spot on there. But in times like this, it doesn't make heart sense ... to us ... but for some reason it does to God. We just don't know the whole story. "What purpose does suffering bring to a person who is about to die?" we ask. We don't know. The only thing I do know when I have experienced a period like this with a parent facing a painful existence before death is I have felt God say "It's not what you think, I'm not going to explain myself to you, I'm in control (you're not), you co…
I am so sorry. Praying for you and your beautiful mama. Suffering seems so wrong. Thank you for sharing your journey with us. Sending so much love ❤️
My heart is with you and your family, but mostly with you Katie, you have been your moms angel here on earth and she will be your angel in Heaven. My Mom has vascular dementia and yes this is a evil horrible disease that our LO's will only get out of when God takes them home. You will be and are our advocate for dementia and making people that are not going thru this with a LO, to STOP and take a look on what this evil disease is and will do to them.. God bless you in all that you do, because you are the one to show the world this is dementia. Hugs and love always Katie.