Keep On Keepin’ On

She is gone but still here. (Caregiving for dementia)

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She’s gone but she’s here

Today is Friday September 6, 2019. I am exhausted but have so many things that I should be trying to complete. My brain has checked out and I too am starting to feel like I must have dementia as it’s so difficult to concentrate lately. I tried convincing her to go out to lunch but instead she climbed into bed and fell asleep. In order to prevent issues later, I gently wake her so she is at least awake. I will coax her back to her chair in a bit in order to make sure she is upright, to optimize lung health, & prevent further deconditioning (weakness due to lack of activity). Everyday since May 11, when I got the call, I have been doing something for or on behalf of my Mom. Some days it’s being her caregiver, other days it’s moving items out of her house, other times it’s battling companies about bills or other issues.

Cleveland reports caregiver burnout as “a state of physical, emotional, and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able, physically or financially.”

My repeated question is, if I don’t do these things, who WILL do them? Who requests the medication refill? Who battles AT&T once again trying to explain criminal activity, just like what happened to my Mom, is now occurring with these phone lines they refuse to close. Phone lines added just shortly before the bilateral subdural hematoma’s were discovered which further uncovered chronic cerebral atrophy, often found with dementia. Now with a bill over $7000 delivered to my address that I try to not panic about while calling them again. Who works on moving all of the paperwork tucked sporadically all around the house in attempts to ready the house for sale?

I attempted to accept help initially but, when 7 days passed without a skilled person coming to see my Mom therefore forcing a “restart”of the 90 day elimination period for long term care insurance, I soon realized some are not as detail oriented as these tasks require. It seems the devil truly is in the details. They say, “don’t sweat the small stuff” but if attention is not given to the details, how does one notice things like $20,000 checks written and mailed away? If details are not attended to, how does a keppra taper safely occur when the pharmacist marks the start date as 8/23 instead of 7/30 as written by the Neurologist? 23 additional days of one small piece of this nightmare!!!! I try explaining he is changing the MD order but am scolded by the pharmacist.

This nightmare is like trying to build a house out of very worn cards that have been folded, bent, frayed. One card relies on other cards which rely on other cards. If one card falters, like a paid caregiver not truly watching my Mom with dementia, then all the other cards follow suit and crumble. Coming home to find the kitchen faucet on while the two sit on the sofa is better than finding the stovetop on, right? How do I get everything done if I now have to watch my Mom & the caregiver?

On May 11, I received the call from my Uncle reporting my Mom was walking & acting differently. When I called her, I quickly noted the Broca’s aphasia, the broken & halting bits of speech, which was completely different than my Moms usual speech. When I called the police & paramedics who came to do a wellness visit, she was not taken to the hospital. My goal was her brain needed to be scanned. The previous Sunday when I spoke to her, she was slightly slurred, but attributed it to the wine she was drinking. We only spoke for about 10 minutes rather than the usual hour as she needed to get off to watch American Idol. Or so I was told at the time. Now I realize she was trying to attend to the multiple text messages and/or calls on her 2 tablets & 1 iPhone from her “boyfriends” while her brain was being compressed little by little from the excess blood inside of her skull. I sarcastically began calling these individuals who scammed her as “boyfriends” when she demonstrated ridiculous perseveration on staying in contact with them. I found 153 cards totaling at least $12,750 given to these “boyfriends” who now infiltrate all of her accounts, multiple checks ranging $2000 – $20000, additional phone lines added to her account, credit cards coming on her account but in others’ names.

The worst part about all of this is that physically she is here but my Mom, my real Mom, is gone from this world at this time. I have no idea if she will be back. It appears doubtful. At times she shows parts of herself but mostly she seems to be a shell. So this shell of my Mom is here, but my Mom is gone. So for now, I try to grieve losing her while also being this caregiver. I appreciate the bits of her that are still here while trying to fend off caregiver burnout.

Every experience we have, teaches us new wisdom. I knew there was A LOT I did not know but, like so many people, had no idea all that I would be learning. Learn one, do one, teach one is a mantra of teaching hospitals. In this case, it seems more like do one, do a bunch more, do even more, maybe some type of learning will occur, lol. So thank you life for all of this learning! Now I am ready to learn about being rich or being a lottery winner! I know, lol. But one can dream right? At least it gives me a small moment away from this caregiver burnout. Again, small things DO matter to fight the devil in these details.

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