In reading past journals, I ran across a symptom of dementia that you may relate to. It also gave me insight into something I wish I had known and practiced back then.
I began to notice that Mom’s calendar was filled with illegible, indecipherable words that looked like “spy codes.” This, in part, explained why she was becoming unable to follow through with engagements and/ or appointments. Consequently, I stayed behind her quietly managing her life on a daily basis. This was 5 years ago when she was diagnosed with “Stage 2,” Alzheimer’s. I kept a copy of her calendar for myself which allowed me to know what she had scheduled for the day. When we’d talk each morning, part of the conversation would always be, “So, what have you got planned for today, Mom?” I already knew, but I was still trying to respect her autonomy.
An example of just how bad it became, was one day I told her she had a 2:00pm appointment with Dr. Callahan and her friend, Patty, was picking her up for that appointment at 1:30pm. Mom’s calendar read “Pringle,” nothing more. I asked Mom if “Pringle” meant she was planning on eating potato chips all day. She laughed and said she didn’t know what that meant. It occurred to me “Pringle” was the partial street name where the doctor’s office was located. Mom’s “calendar” was filled with partial information just like that. This was a huge red flag that even a “calendar” had become too much for her to manage herself.
Mom arrived at the doctor’s appointment 20 minutes late because she forgot the appointment and that Patty was coming by to pick her up. When the doctor’s office called me, they told me Mom was very stressed and had forgotten her wallet, which included her ID, medical cards and method of payment. They were very nice about it and kept their appointment with Mom. I gave them the information they needed, paid for the appointment, and thanked them for their help.
When Patty took Mom home, Mom forgot her house key. Patty called me from her cell phone saying they couldn’t find the hide-a-key, so I got in the car, drove to Mom’s to let her in the house. I wasn’t happy about this. Frankly, I was pissed at how the entire afternoon blew up at different intervals. I put a new hide-a-key in a place that her friends and I knew about, and also mailed her friends a set of keys for themselves. When I got to the house, Patty had already left, leaving Mom in the back yard sitting quietly in a lawn chair. Patty, I’m sure, had had enough of the day, and I’m also sure she knew I was pissed.
This was a typical crap scenario that turned typically crappier. Everything I tried to do, tried to foresee to make sure Mom got to her appointment, was not enough, not even close.
What Is True For Me: Caregiving involves seeing all angles and all sides of what could go wrong in any circumstance. WE have to think ahead and TRY to cover all bases. It is partially why we are on alert and on constant overwhelm every single day. What I realize now and should have realized then, is I should have better delegated and better educated those willing to help, specifically on the preparedness beyond the appointment itself. To presume that friends who are willing to help would have this “caregivers” mindset is too much to expect from “ordinary” friends.
I should have gently asked Patty to call Mom an hour before picking her up so she knows about the appointment and is ready, and to make sure she takes her wallet and house key. Instead, I let this, and every other opportunity go because, by the end of the day, all any of us wanted to do was forget about Mom’s illness and just move the hell on. Had I thought to delegate and educate better, maybe every one of them wouldn’t have retreated and never helped again. I am the first one to have the understanding and compassion that it was/is very difficult to be around Mom. It had to be incredibly painful for Mom’s friends to watch her decline with this disease. Additionally, I admit, I could be a raving lunatic bi***.
The subtle sign of Mom’s calendar full of incomplete “codes” and spacing appointments, was a red flag I chose to ignore. I hoped my reminder phone calls with Mom that same morning was enough. It wasn’t. So while I sat in the comfy chair of denial, time passed, and I chose to bask in the belief this was just a one or two or three--- or four time “slip.”
What faked me out and was obviously too heart-breaking to accept, was Mom, at times, appeared lucid and fine. I was looking at an “adult,” my mother, who was once a very capable, organized individual, who remembered everything when she raised me. Now I was seeing an innocent child incapable of knowing, planning and following through with what to do, or how to do it in the real world. Of course, eventually, I got a grip and accepted my parental role.
Honestly, however, I would have been a lot further ahead with a lot less stress with the actual burden of it ALL had I accepted, delegated and educated those people willing to help Mom. It would have been more respectful for them as well as for myself.