Visiting with Patti Wednesday night took some ‘tracking skills’ <grin>. Each stop lead to another where she had been and I was greeted by, “Yes, Patti visited for awhile; but you know how she is, she just can’t stay still.”. Finally finding her, Patti claimed to be bored and tired and wanted to go back to her room and bed.
While chatting she confessed she was glad I had stopped by tonight because she had "nothing to do but sit in her room and watch TV." Yet the nurse giving Patti her medication reported Patti had been out socializing since dinner almost 2 hrs ago. Yes, Patti’s remark and the nurse’s report are conflicting realities. Asking Patti about the apparent conflict did not go well and was rebuffed by a gruff “So what?”
I’ve learned that with memory problems sometimes it is not always helpful to hold up reality. <grin> And it doesn’t really matter now that Patti is in a care facility because she is safe. In homecare that was not always the case. Memory problems can have consequences.
The weird thing about memory loss and or short term memory problems, which are a common symptom in MS, when you are the caregiver is that you don’t really know when the problems will kick in especially when they begin as intermittent. Once you start doubting or double checking a new level of caregiving begins, it has to.
The above incident was harmless but there were times in homecare where what Patti reported when she was unattended and what really happened was rather scary. Especially where things that were once OK become ‘at risk’ in particular allowing the person with MS access to their medications or medications for others especially children or responsibility in the kitchen.
At the suggestion of Patti’s doctor rather than deal in argument and accusation I simply took to taking a daily pill inventory and keeping a log, I invited her to participate. I had something to show Patti in black and white. Her short term memory problems where beginning to manifest intermittently. She just could not remember if she had just done something, even to write it down.
Memory and cognitive symptoms progressed rapidly in Patti’s case. That doesn’t mean they will in everyone’s course of MS. However regardless of progression or even disease, all caregivers face the point where short term memory problems can cross the ‘at risk’ line. It’s not “doubting” the person you care about, it’s just good caregiving.
I found the more I included Patti in creating ‘fail safes’ the more effective they were. Above I mentioned a daily pill inventory.
Some fail safes were physical. We purchased a glass top stove with controls in the back. This was the most inconvenient for Patti in a wheelchair. When her memory problems began she would start something on our previous stove and forget about it, once even starting a fire. The new glass top confused her and controls where inaccessible – all in all this discouraged her use. That is what WE wanted.
Ending her scooter days was difficult. It had to end as she would get lost within just a few blocks after leaving home and forget where she was going or how to get home. Her scooter was empowerment and freedom. Not all memory related transitions will be easy no matter how logical or 'proven'.
Rather than ramble on, it’s just nice in this transition year to know that Patti is safe and that her memory problems vs reality can cause nothing more than a gruff response. <grin>