...to help someone to the end of their life.
A big, noisy, there-when-you-need them village.
A village of two.
The first few years of Mom's dementia Dad was adamant that he alone would take care of my mother until her last breath. Never one who liked to be told what to do (U.S. Government), I believe he feared interference from Mom's circle of family and friends as he often bristled whenever anyone broached the subject of outside help for he or Mom.
I once had to act as go-between for an aunt and my Dad. She thought he was keeping Mom from her, he got defensive and wouldn't take the time to explain that Mom was becoming increasingly uncomfortable being away from the familiar: him and home. It was barely a skirmish, and quickly resolved, but it made me realize that at some point, the dementia's progression would require shared care giving, and that Dad's insular nature, that served him (and often us) so well in life was going to be a battle to overcome.
But I never got to fight those battles. Dad died. I would have rather waged war with him then carry on without him. The best laid plans...
A village of three.
So, that left my sister and I to figure it out. We had to defer our grief and quickly pull together a plan without the father we had relied on all our lives to do the planning. It was a raw, tense, tough time, not helped by the fact that myself and The Other Girl had only recently begun healing from a brutal falling out between the two of us. Things were still touchy, painful.
We recognized immediately that one of us could not take all of Mom on. It was never said out loud, we both just adjusted our lives, eventually splitting the week up, to share the responsibility of helping Mom live hers.
Becoming a kick-ass care giving team was not easy. For me, it was the most agonizing part of this journey so far; two sister's with zero in common, and not even sure they liked each other anymore being thrust into a partnership that included figuring out how to live in the same space without getting on each other's already raw nerves, agreeing on resource allocation so our devotion to our mother didn't completely destroy hers or our financial futures (we probably won't know the answer to that until the fat lady sings), caring for our mother in our individual ways, without judgement, with respect, and a hands-off policy for the other's coping mechanism and strategies. It was incredibly stressful at times. And occasionally still is, but we persevered.
The village grows.
An additional strategy we implemented was to open Mom's life up to others. While we continued taking Mom to her twice weekly walking date with former coworkers, we also actively sought out other friends and family to include more often in Mom's world. The Other Girl began utilizing her close relationships with cousins: double-date mother-daughter manicures, attending baseball and soccer games of school-age first cousins, dinners and lunches with Mom's adored nieces. I took Mom to visit her sisters on a regular basis (Mom has four - that's a lot of days filled traveling around the state to see them!) Christmas cards, email updates - in every outside communication with friends and family we made it clear that we would travel anywhere to see anyone if they had an hour or two for a lunch, dinner, or movie. We made it as easy as possible for people to engage in Mom's life.
The village immigration policy.
As we got Mom more involved in the outside world, we began making new friends. The Other Girl rekindled friendships, bringing fresh family groups into Mom's life to enjoy. I found that there were a lot of older people in want of additional companionship for their own reasons, and were happy to come along on outings, and if the outing was free or inexpensive that made it even easier for limited income folks to mix it up in Mom's world.
We've made friend's through Walk Club at the local community center, with one gal in particular who is always game for plays, movies, or lunches at new-to-us restaurants. We've become much closer to The Other Girl's ex-mother-in-law. She loves to go to musical performances, we love to take her, and often increase the party to include my nephews. We listen to her chatter and wait to see what crazy thing she's going to do next (she'll read anyone's palm who's unlucky enough to offer her a hand).
The Opening Minds through Art clan is starting to feel like extended family to all of us. A monthly Dementia Cafe, that we haven't yet being able to check out, may provide a connection with other dementia folks and their care partners for more engagements. I've been looking for Facebook care giving groups in our area to accomplish the same results (not much luck yet).
So, our village's immigration policy is completely open; all are welcomed! Give us your aging masses yearning for an adventure and we'll make it happen. These new villagers have accepted Mom for who she is, are kind, funny, lively, smart, and Mom and I both enjoy their company greatly. New citizens will often thank me for including them, but the gratitude is all mine; when there is someone to talk to, laugh with, and make Mom smile it's invaluable, and hands us a great day we might not otherwise have had.
Village culture.
The Other Girl and I have made it our mission to put people at ease with dementia. We've attempted this by example: we do not shy away from dementia's manifestations in our mother. We embrace the humor, we tease, giggle, joke with Mom as we always have. And, as she always has, she either teases back, or lets us know she's had about enough of us.
We try to give people a sense that we are not losing our mom, and they are not losing their sister, friend, aunt, grandma. She's changing, just like we all change when it's our turn to die.
Her process is a prolonged one, but that gives everyone more time to love what's precious about her.
The population ebb and flow.
This village has been the foundation that allows my sister and I to knock care giving out of the park (well... most of the time). We owe everyone who has joined our little corner of the world all the thanks we can muster. Every week Mom's cognitive skills decrease, and while we will still appreciate family and friends, eventually she will not be able to.
I know this will be painful for some in our village to accept and expose themselves too. I also know this is when The Other Girl and I will need them the most. If they can't directly do for Mom anymore, they can indirectly help by staying engaged for my sister and I; care giver isolation is the death knell to good care. I hope this village we have constructed will stick with us when the shit really hits the fan (instead of just the carpet, under the bed, in the closet, hidden in shoes, thrown over the balcony...).