Beautiful Lessons, Ugly Disease

Mamaw & PapawMy Mamaw has always been one of the most precious people in my life.  As her namesake, it is quite fitting that we share many things in common: slanty green eyes, full hour-glass figures, and our love of old southern gospel music are just a few of our shared attributes. We are also both outspoken oldest daughters, with firey tempers and sharp tongues.

While she grew up in the foothills of Arkansas in a dirt-poor family of 15 children living hand-to-mouth, I have lived a life of privilege, by comparison. She literally lived those stories you hear old people tell about walking 5 miles to school up hill, both ways, barefoot in the snow.  Working every day milking dozens of cows, she then herded them to pasture and picked never-ending rows of cotton. Married at 15 to my Papaw, they made their way eventually to Florida to build their family home with their own hands, piece by piece, brick by brick. She likes to say she “handed him the boards and took the cussins”. She endured 11 years of infertility, which she blames on my Papaw’s case of the mumps that “went down on him”, and then raised three children nearly to adulthood when God surprised her with another baby at the age of 44. As long as I have been alive, and pretty much as long as SHE has been alive, she has been taking care of someone…if not her own children, then one of her many brothers or sisters, and finally her grandkids who all worshipped the ground she walked on.

A very queen of cooks, with a specialty in fried chicken and seven layer cake (a southern delicacy with paper thin layers of yellow cake slathered in home-made chocolate frosting), she could make a meal you could smell half a mile away…just follow your nose to her knotty pinewood kitchen and pull up a chair. Aside from cooking, she was a master in other domestic duties, waking up before dawn to clean the house spic and span and work tirelessly all day crocheting or sewing. She maintained a lovely yard, a sanctuary of green grass with overgrown flowerbeds and numerous potted plants beneath the dappled shade of huge live oak trees, and she never shied away from heavy yard work– mowing her own grass, painting her own tin roof, and moving an entire patio of bricks clear across the yard in her sixties and seventies. She was never a real lady; her hands are rough and calloused and her feet look like they never saw shoes in all of their days, she has never been afraid to speak her mind, and she could snore down any man…but she has always been a woman to look up to…a woman I wish I could be.

I miss her so much…too much to think about, so I put it out of my mind most days. I am a terrible, horrible granddaughter to the grandmother I love and adore so much because it hurts me to take care of her. That is the ugly and sad truth and I hate myself for it. Mamaw has Alzheimer’s and she is in her last stages, and my time with her is so short, but I craftily find almost anything else to do than just show her the love I do actually have for her–and I really do love her so much. She doesn’t know me anymore and some days she doesn’t want me to touch her or talk to her too much, if her meds aren’t right or on time, and her once green eyes that crackled with fire are faded gray and stare vacantly more and more, with the little spark of recognition less frequent. She cannot walk, and is very easily unnerved or aggravated–she wants to do something and nothing at all at the same time, and almost nothing pleases her. Any memories she does have are all distorted or manufactured…it is nothing like on TV where the old person relives an actual old memory or confuses you for someone in the past, at least not in her case. I would give almost anything to hear her old stories again, just to hear her talk willingly or laugh, even if it meant mistaking me for an old friend.

I don’t know much about many mental diseases or disorders, but I sort of imagine that in many cases it is like the person is trapped inside their own head. Neurons and pathways just aren’t linking up properly to allow that person to shine through.  Alzheimer’s isn’t like that. Sometimes Alzheimer’s feels like the person is a tire with a slow leak that you cannot find to patch up–the air just keeps escaping, there is no fixing it, and you start to panic. Sometimes it feels like all your really nice, plump, juicy grapes are turning into raisins–dehydrated shells of their former glory, but sweet nonetheless.  Sometimes it feels like Alzheimer’s is more like the person is fading away–like a hologram, static-y and glitch-y like Obi-wan Kenobi relaying a message through R2-D2.

I expressed this to my good friend at church, Arlene, whose mother suffered from dementia. She explained to me that this disease, as ugly as it is, has its beautiful points, too. For one thing, she pointed out, it gives me an opportunity to be a channel of God’s grace and mercy. I have the privilege of being an instrument of God for my fellow human, and my most beloved grandmother especially, in her darkest and final hours. It is always His will that I do this, and I must pray for the courage to do His will over mine. She also expressed to me that this is probably my Mamaw’s purgatory and when her time has come, she will be ready to enter the pearly gates, or be that much closer to it.

Purgatory was not something I struggled with when I was going through my conversion, once I understood what it was, and that it was not a place of torture or punishment, but a purification/glorification process, so it makes sense that an upright, God-fearing woman that committed no major sins that I know of complete her purgatory stint with this disease and have no further ramifications at its end. I know my Mamaw doesn’t specifically believe in purgatory, but I do know that she believes we do our suffering here on earth, and that  suffering comes whether you are a good or bad person because this world is full of toil and trouble…so I think she would actually agree to an extent.

Suffering, too, brings us closer to Jesus. We get a tiny little smidgeon of the suffering He endured for us, and become a little more like Him. James tells us to “count it all joy” when we are faced with trials. Joy? We never ever see that while we go through it, of course. I didn’t understand it entirely when I first read it, but there is a quote in one of my favorite childhood books, Rilla of Ingleside, in which Rilla, who is a teenage girl growing up during WWI with three brothers and a sweetheart overseas in the military, marks the second anniversary of the start of the war with a reflection that she thought before the war started that the past two years would be full of fun. When questioned if she would trade the past two awful years for years of fun, she says, “No. I wouldn’t. It’s strange – isn’t it – They have been two terrible years – and yet I have a queer feeling of thankfulness for them – as if they had brought me something very precious in all their pain.” If I follow God’s command of showing help and mercy to my grandmother, my suffering is not for nothing. Knowing that doesn’t make it any easier, somehow, though.

I have learned, too, through dealing with the effects of this disease that strength comes when we are seemingly at our weakest. My mom, who is certainly earning her saintly crown already with her corporal works of mercy, tends to her mother tirelessly and so devotedly. I know that she is exhausted sometimes, and her sadness is palpable when she leaves Mamaw’s side for the night, but she does count the suffering all joy and treasures every remaining moment with Mamaw. My sweet Mama, who is meek and mild, sensitive and shy, has shown remarkable strength and courage in this losing battle. Oh, that I could be more like her, I think to myself while simultaneously hoping there are no more opportunities to warrant such a show of bravery.

This slow descent into death has given us all a chance to say goodbye, after a fashion. Instead of it being like a hologram of a person, the end of the disease is really most like teleporting, Mr. Spock style–she is fading here, but showing up stronger in the new world.  I know I will cry when Mamaw is gone, but I also know I will be so relieved and happy because her earthly suffering will be over and she is fully in Heaven. My Papaw died unexpectedly for me, when I was a child, and it traumatized me and hurt for so long. Although it isn’t that I love my Mamaw any less than I love him, I know that the pain will be less when she goes. In may ways, it feels like she has been gone for years already…and so slowly that I never noticed her leaving.  My greater sadness will be if I cannot muster up the courage to do as I ought, and let her and Jesus down with my own selfishness.  I love them both too much to be so small-souled and cowardly.

Pray for me, friends. Pray also that my sweet grandmother lives her final days in peace and comfort. Pray most of all that we find a safe, reasonable cure for such an ugly disease.

God bless you.

Mamaw & me

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