Since becoming a front line caregiver myself, and I am far from earning my badge of honor, I have learned a lot. Alzheimer's leaves many casualties in it's wake as it crushes and destroys. One of the many frustrations that I face is what I call the side-line caregiver or SLC.
Two years into being a front line caregiver or FLC, I find that my patience is wearing even thinner with these SLC than with my dad who I will refer to as ALZ.
These SLC are the ones who try to tell you that they understand what you are going through because they remember when their granddad had dementia and put way too much salt on his potatoes because he confused it for pepper. Or when they were so embarrassed when he showed up at Christmas wearing 2 different socks. (I pause here to bring my blood pressure back down).
The difference in being 1st in command on a daily basis and watching from the sidelines is miles apart.
So when you try to claim that you understand my struggle because you saw Mamaw wearing her shirt backwards. In my head I am fantasizing about punching you in the face.
And while you may think you understand, like I once did from watching the end of my mother-in-laws life be stolen from her with this disease, I know now that I was truly clueless.
I'm sure these SLC, and especially the people who have never dealt with it, think the are being helpful by suggesting that I simply take his checkbook away. Just know when you are saying these things to me I am dreaming about the closest set of stairs to push you down. Because yes, it has occurred to me a year ago to take the money away. But, 3 different banks later and dealing with an ALZ that still remember numbers (account numbers, phone numbers, routing numbers) this is an impossible task. I have tried every avenue possible and you insulting me by assuming that in my all consuming battle that I have not tried this first step, may earn you a black eye.
Some of the things that I have found that a FLC does and/or experiences that a SLC does not are:
- If you lie awake most nights trying to plan, prepare, research or just plain worrying (as I write this at 3am because it's the only time I've had in the last week
- If you spend a time every night going through your ALZ social media pages to delete the inappropriate post, comments or photos. Or sending apologies to people for these things.
- Spend hours boxing up items ordered by mistake or multiples orders only to get home and receive an email that your ALZ has just ordered them again
- Scouring through their email every day to make your list of things to do, fix, undo, correct or send an apology, etc
- If you have reset a password more than 7 times in one day....for the same account, to keep the ALZ out
- If you have sat at your desk crying at 7am while you order adult diapers
- If you have made every chart, graph, reminder, task list, calendar, to-do list imaginable hoping it will make the ALZ day easier
- Having to choose between eating lunch or spending that time calling doctor offices
- You have to choose between going to the restroom or calling some place that is only open during the day because you have been away from your desk too long at work that day. You prioritize day time calls and evening calls
- If you have had to see your ALZ naked and struggle to get them to keep their hospital gown pulled down...then try to sleep after that one.
- If you have lost weeks of your life due to their obsession with a sliced ham
- If you check the bill calendar and their checking account everyday to make certain they haven't decided to buy 3 bamboo pillows and 7 camping lanterns and thrown your budget out the window
- You have research medications to the point you are pretty certain CVS could call you when they are short staffed because these doctors never pay attention the the other medications the ALZ are on
- If you have to make certain every day that they have eaten something and at least several times a week are bathing
- Your medication list for your ALZ is a color coded spreadsheet with pictures of each medication/pill just to help you keep them straight and not accidentally kill them by giving the wrong pill
- The white lies you tell to distract them have become so complicated that you begin to question if you're the reason they stay so confused
- Crying from frustration and sadness is an everyday occurrence
- You want to protect them so much from someone taking advantage of them that you have a hard time letting anyone else help
- You have spent 11 days trying to pay the cable bill (this is a very long story)
It feels like you are driving a car with no steering wheel. You want to control and manage things but everything is completely out of your control. Bottom line- it's hard. Really hard. In addition to the physical and mental strain of the extra work, you have the emotional toll it takes on your heart that you are watching someone you love just fade away.
I remember the first time it really hit me what was happening. The 2015 college National Championship was coming on. And for about 5 years my dad and I loved to talk football and call back and forth during any big game. But when I called that night so excited for my pre-game chat he did not even realize that any football game was on, especially a National Championship. My heart broke because I knew this was the beginning of the end.
I understand the sadness for any person who's life has been touched by Alzheimer's. But I ask you, for your own personal safety, to understand that watching it from afar and being the CEO of Operation Alzheimers are two very different things.
If you are the front line caregiver for someone and need a listening ear I would be glad to help. I'm willing to share any of what I have learned and/or tips as well. Hey even in my last consultation with the national Alzheimers Association, they said I offered them some ideas that no one had before.
So what is the appropriate response to a front line caregiver and avoid bodily injury? I'm so sorry, this has to stink so bad. I will bring you chocolate or chips & salsa anytime you need it. That is all we need.
Until Next Time~ Safe Picking
Tammy
