11/24.18
I have never been a 24/7 caregiver for mom since her Alzheimer’s arrived, yet I can, at least a little, recognize those in the trenches as kindred spirits. As many (greatly appreciated) kind words as I get for chronicling my visits with mom and the Sweet 17, those who deserve accolades infinitely more than me are those who care to their needs and cope with the idiosyncrasies of those with Alzheimer’s all day, every day. I am thankful for you and your example. I am also very thankful for the nurses and doctors in occupational caregiving roles. I am super thankful for SeniorAge and for the Alzheimer’s Association, both of which would be ideal destinations for your Giving Tuesday dollars next week.
The 20 or so hours I spend with mom during the work week allows me to tiptoe into the presence of the 24/7 (36 hour day folks) and feel similar in one area: guilt. I have already discussed a few times the guilt of leaving during a visit. It is real and it is sad. If classical conditioning is a thing for a brain bandit victim, we should do our very best to be consistent and make the leaving experience as quick and painless as possible. If I cave and stay every time (or even often) when mom asks me to not leave, she could (?) “remember” that it worked, if even subconsciously. I would welcome your continued input on this topic…
The big poop pile of guilt, still simmering in the sun for me, is the guilt of having to put mom in 24/7 nursing care to begin with. She is physically really good, if inconveniently good around her more brittle Sweet 17 neighbors. Mentally, however, she was and is in constant danger of accidentally harming herself or others. Unfortunately our lives can’t afford us the option of staying home with her, and, even if it was an option, I would suck as a caregiver 24/7. I like me too much. Me time. Time out with the family. Time posting pun memes. Additionally, I wouldn’t be good at it any more than I was particularly good as a dad of toddlers. Susan was and is the master of this. Alzheimer’s patients need constant (!…no, really, constant!!) attention in many cases. Mom at home a year ago had really stepped up her micro-hoarding game. Not classical, cats-eating-poop-hoarding, but anxiety from forgetting and losing stuff hoarding. Whether it be hiding important or dangerous stuff where only she could find it, saving junk/trash or perishable foods in weird places, stealing her mail and putting it under her mattress type hoarding, it was still a big, potentially dangerous challenge. Mom would search out harmful things like nails and tacks and keep them in her pants pockets. It would be easy to see her accidentally overdose or, perhaps more likely, consume something one shouldn’t consume. She would partially plug in lamps with her fingers by the plug, would walk outside if you weren’t paying attention and forget where she was…a block away from Highway 60! One day six months ago I arrived at her house for a visit and she was standing alone in the yard. My stepdad had snuck out while she slept for a 5 minute round trip to a neighbor’s house to pick up something and she woke up and investigated. As I was talking to her in the yard, my step-dad returned, horrified that she woke up on his watch. Guilt arrived too. Mom asked who was pulling into the driveway…then a memory pathway finally opened up and she realized it was her husband.
Guilt falls thickly like a knife-carvable fog. Senior Age arranged extremely helpful respite care and the Alzheimer’s Association has some very helpful provisions in that area too, but anything less than 24/7 “respite” care leaves safety gaps for mom.
Nursing homes are not ideal. Ideal and guilt-free for mom would be a remodeled, safe home with around-the-clock help, a periodic visit from a circuit of medical specialists, a rerouted highway 60, friends with similar concerns, no shifty door-to-door salesmen visiting and all for free. Anything less and the temptation is to feel guilty. Neither you nor I should feel guilty if we do our best. My mom’s financial provisions would dry up very quickly with the above scenario, if it were even a little feasible. In nursing care, she can be safe, have social interaction with others who understand her plight in a small way and can have access to rapid medical care if needed. So what is there to feel guilty about??:
She is not at home…and it is sad.
The lost opportunity to interact from years gone by.
The words said in haste or anger that are long forgotten, except by me.
The choice of answering or not answering calls from years gone by.
In life, we fix the things we can fix, ask for forgiveness from our faithful and just God (1John 1), and we forge on, learning and growing. Me and mom, by and large, have and had a great relationship. No amount of guilt will replace failures nor make amends. This calls to mind grace and my need for it. I have, not unlike Peter and the rest of the disciples, failed my Lord (and mom) many times. Guilt shouts “remember that you failed” while grace (and Christ himself) forgives and beckons us to continue in our walk with Him knowing that every sin debt for a believer was paid for by Him.
Live in grace. “Forgive yourself” of past sins with your loved one that can no longer be addressed here, but are never beyond God’s always available forgiveness. . Don’t let guilt keep you away from your loved one in or out of a nursing home. The Sweet 17 get few visitors, and I know there is guilt out there (in spades) in their families. Don’t let guilt of forgiven failures keep you from doing what’s right today. Will they remember you after a month or a year between visits? Maybe, or maybe not. Heck, mom forgets me when I leave for a bathroom break…then remembers that she knows me. We don’t know what is going on between their ears. One thing I can guarantee you though: someone there will be happy to see you.
#EndALZ