The last time I sat with her in church was like sitting in a draft. She was next to me, somehow knowing she was in her church of 40 years, but there was a current of air separating her from me. She smiled and I chose to believe it was a smile of familiarity even though she referred to me as “that lady with a nice smile”.
That lady. The one who’d grown inside of her for 9 months, who she’d taken to piano lessons and sewn clothes for. Her first born, first daughter who she instilled an interest in art and a desire for lifelong learning was ‘that lady‘.
She was there in body but there was a presence that was missing. It made the air still, stagnant.
I decided to fly cross country to visit my sister on the first Mother’s Day after mama passed. It felt right to be there, as if it would somehow redeem the loss.
I thought it would be easy. But when my eyes peeled open in the early morning light on Mother’s Day, sleeping in my nephews room at my sisters house 3000 miles from mine, I missed her. I missed mama sitting next to me not knowing who I was but smiling kindly.
You see, she was a warrior. Her life had been given to fighting for those who couldn’t fight for themselves. She’d organized teams of volunteers to take kids shopping at Christmas. She lead food drives and took coats to families needing protection from the harsh winters. She’d enlisted a whole army who never realized they too were warriors.
Bit by bit we would lose her memories of being a family. The look of uncertainty covered her face. She was lost and searching not only for memories but for words and meaning.There was no fighting Alzheimer’s. It was always going to win.
Somehow her reverence for scripture remained long after our connection was lost. On my husband’s last visit with me he pulled up a passage from the Bible on his phone and started reading. Her body stilled as she focused all she had on the words being read. She seemed to give a slight nod of affirmation. It was something I held onto as if a small victory had been won.
In yoga, the warrior pose is standing with legs apart and arms stretched outward. It doesn’t appear to be a warrior-like position. Rather than looking like one ready for battle it’s one of complete openness. It was the pose mama held as she fought poverty and loneliness. Compassion always stands firm, arms always outstretched.
Alzheimer’s left ongoing grief in its wake. Grief is stealthy in its attack brought on by the best of memories. It aims for the heart. Some days I want to take the curl-up-in-a-ball-and-watch-Netflix pose. Instead, I allow the grief to wash over me, blinking back the salty tears filling my eyes. An open heart is stronger than we can imagine.
I’m a fighter I remind myself. I come from a long line of strong women, women who stood firm in conviction and held their arms wide open for family and strangers. There is no assurance you won’t be hurt. To the contrary, there is evidence you will be hurt. Again and again. But you won’t stop fighting.
It can feel a little like losing but love sometimes does.
Share this:
Five-Minute Friday {alone}
The short refrain from The Lone Bellow rings loudly in my ears
“….you’re not alone, you’re not alone”
and I wonder if she knows that 3000 miles away she’s not alone.
a rare time the three of us are together Aug 2015
Today is another birthday celebration for mama, another she won’t recognize and another my sister may feel alone in carrying the family weight of simply being there.
It’s something we’ve slowly come to accept simply because we have no choice. She is there, Washington state, our brother is in Dallas and we are in the tip of Florida, eyes on that “cone of uncertainty” watching another storm with a name.
Even with her three kids and supportive husband, with dozens of extended family nearby, how many times has she felt alone sitting with mama, answering questions of her care givers and showing up when others can’t?
Sometimes life is that way and while we’ve shared the tears we also share the smiles and understand when our laughter may not be understood by all. We know that standing alone does not mean we are alone and we ask God for that comfort that he gives, sometimes, in surprising ways….the smile of a knowing person, the email from someone who has walked this journey, the echoes of a song.
“By yourself you’re unprotected.
With a friend you can face the worst.
Can you round up a third?
A three-stranded rope isn’t easily snapped.” Ecclesiastes 4:12 the Message
Share this:
M is for memories
She is okay. We are still being tossed about in the waves of a grief that is going on 7 years now.
Mama is as okay as anyone with Alzheimer’s dementia can be. She is being cared for. She lives in a safe place meaning the doors have alarms so no one can wander outside without alerting staff.
She is clean because staff sees to her well-being.
She is visited by family and friends and she still smiles and laughs at times though she sleeps more.
She is content and we have come to value that word, that state of being.
The grief is more gentle these days. It’s felt strongest on birthdays and mother’s day. The cards that won’t come and cards sent to her and signed “your daughter” still carry a whisper of a hope the words will have meaning.
Tears come more on these days. Tears for dreams once held of more time spent together with her. Tears for a mama who is more gone than present.
I find myself talking about her in the past tense at times, as though she has passed. The part of life where we knew each other as mother and daughter has passed. And it is sad.
For a moment I will allow myself the sadness of that loss but I want to remember more what she doesn’t. I want to remember the time we met on her side of the country. When we drove a little Nissan from Ft. Lauderdale to Yellowstone National Park packed with two kids in the back seat in the days before electronic entertainment devices.
Or the other time we met in the middle, them driving from Yakima, WA and us again from Ft. Lauderdale to meet at a house outside Branson, MO.
There would be more cross county trips for us and even more flights for her to be at graduations and weddings and just to be with her kids.
Her sacrifice for us was always there. She is my Proverbs 31 woman. The one who was up before the rest of us to cook breakfast, and serve it and clean up after.
The one who sewed dresses for me and patched many a knee on my brothers jeans.
The woman who made sure the family money was spent wisely, shared generously and saved something when there should have been none left.
She loved people and her life’s work was to help those in need. She was living the calling God had placed on her life to serve and this is what brought her joy.
Mama would be the first to tell you her limitations. She didn’t like being overweight and she could have a harsh tone if warranted. She suffered a broken heart when daddy divorced her but she found love again, much to her surprise I think.
Knowing her imperfections, we still praise her and recognize the depths of her love for God.
What she doesn’t remember we proclaim and celebrate.
These words from Proverbs describe her well. A woman who never set out to charm or to be anything other than “neat and clean”. A woman whose beauty was heard in her laugh and shared with her smile. A woman who loved and served God above all else. Thank you, mama.
Charm is deceptive, and beauty does not last;
but a woman who fears the Lord will be greatly praised.
Share this:
Healing for every disease
It only took until verse 3 to make me pause in my efforts to write out my specific thanks as listed in Psalm 103.
This verse: “He heals your disease – every one”, stops me.
I know the answer. I know the ultimate healing the Psalmist is talking about. The healing when this body is gone and we find eternal peace and restoration in heaven. That is the healing that will last and the one that gives us hope in the midst of today’s struggles and disease.
It’s not my favorite answer. I’d prefer the answer that works like this:
“Dear Lord, please heal Linda of her cancer.” PRESTO – HEALED!
“Father God, please take this dementia away from mama.” PRESTO – HEAELD!
Isn’t that the kind of healing you want? Isn’t that the kind of God you expect? The kind who hears our prayers and answers them. Just like we want.
Instead, I find a God who works his way and not mine. I find a God who directs me to the doctor when my heart seems to be fluttering away and the tears won’t stop. I find a God whose healing is at the end of a prescription for anxiety meds.
I’ve found God heals through community and the 12 Steps. This healing is slow and more of a process and relapse is common but it’s a daily healing that depends on work. It’s a healing that embodies the spiritual practice of faith and works.
The healing I’ve found most often, the one that’s my least favorite, the healing that cures every disease is death. Death to self and life in Christ.
Job, the bible character most noted for his patience in suffering, was an example of healing. His family and possessions had been taken from him. Pain and physical suffering had consumed his body. His friends and his wife urged him to curse God. Others told him to seek forgiveness because surely all this disease and loss was brought on by sin.
In Job, healing looked like faith. Unshakeable faith that refused to curse God. Job died to himself when he endured physical suffering and pain. Died to himself to live in God. The here on earth God. Today and tomorrow.
This is healing. For every disease.
This is the healing for which I thank God.
Share this:
Ordinary heroes {Lisa}
Did you see it? Were there tears in your eyes? This is the hard one for me. The best hero and the hardest to write. The best because it’s closer to me than any others and the hardest because……well, it’s closer to me than any others. Were I writing with pen in hand you’d see the tear stains on the paper.
Today Show has been doing updates on Glen Campbell as he and his family document their living with Alzheimer’s. That’s what had me tearing today. This road I’ve walked from afar with mama.
Mama, me and Lisa in 2009
Mama and the facility director singing happy birthday to my sister. Mom is laughing as usual.
Her youngest grandchild bringing a smile on her 75th (2013)
Honestly, I don’t know how this would have turned out if not for my sister. The one who lived next door to mama and cross-country from me. The one who saw first hand the memory fading, the one who had to sound the alarm to family who denied and insisted mama’s only malady was aging. Living next door she saw the day-to-day that others didn’t.
There’s a lot of years between me and Lisa. Our kids long grown and her oldest a freshman in college, her youngest in third grade. Seven years ago when concerns began, Lisa had a nest full of young ones vying for attention, of young ones not understanding what was wrong with grandma.
We’ve shared tears, usually through email because when we’ve been together we needed to be strong for each others. We’ve asked each other why and come to accept there are no answers to that. I’ve been little help to her living at the opposite end of the country making annual visits when all this got serious. She’s been left to shuttle mama to doctors appointments in between shuttling kids to band practice, piano lessons and childcare. Did I mention she has a day job too?
Her heroic acts include standing up to family who insisted mama could continue to live in her house, alone. To try to explain to her kids why grandma didn’t recognize their dad, the one who lived next door for 15 years. To tell the woman who raised her she needed to bathe. Then to search for a facility to place mama when it was evident she couldn’t care for herself.
Those are but a few. There are so many more I don’t know, not being there and life being so daily and all.
She’s not alone in this heroism as the numbers of Alzheimer’s grow more each year. But she’s the only one who is my sister, the only one I have an inside view of the burden and struggle this is. I think she would tell you it’s grace. Grace and faith with grace taking over when the faith runs low. The only thing that can take her through days of sitting with a mama who doesn’t know you but knowing you love her even more.
“God answers the mess of life with one word: ‘grace.'” Max Lucado
Share this:
Throwback Thursday {birthdays}
She was the middle child of 11: 6 boys, 5 girls. Born to a poor family in a Oklahoma town so small she often told others she was from another small town. She told few stories about those times. Just that her mama always cooked enough to feed others and a woman they called Aunt John who helped with the kids.
She married at 16. I expect she was swept off her feet by a charming flirt, handsome in his Salvation Army uniform, himself just 20 and fresh out of seminary.
She’s turning 76 today but in her mind she is ageless. The cards she’ll get mean nothing to her but we’ll send them because she means something to us.
Juanita Jim Bill Pauline (mama) 1942
Mama’s high school photo
I suspect mama and daddy celebrated their birthdays when we were growing up though I never remember one. Not for them. She saw to it that my brother and I had birthday parties. My 13th was at the skating rink.
By my 14th they were divorced but she saw to it I had a party.
my 10th birthday
my little brother’s 3rd
I’m surprised I even knew my parents birthday with their celebrations being absent. Maybe that’s how it was for their generation and how I carried it on in our home, mostly. The kids got the parties.
Her mama celebrating her 75th with a motorcycle ride.
A rare visit over mama’s birthday in 1976
Her youngest grandchild bringing a smile on her 75th
I was with mama on her birthday a few years ago. I think it was her 72nd. The dementia was apparent. We had pretty gift bags with colorful tissue. The bags were set in front of her but nothing. I picked one up and handed it to her and she held it and looked at me with a cocked head as if to say, what do you want me to do?
“It’s for you mama.” A smile.
I opened the bag, reached in and took out the nightgown to show her. Another smile, a curious one. She had no idea what was going on. That this was for her. This day was about her.
It’s worse now and I haven’t been out there in 2 years. Lisa sends pictures. They had a big celebration last year on her 75th. She liked the grandkids visit and smiled at the cake and colors not knowing they came to celebrate her.
This year, she’s sleeping a lot more. Content but tired and it’s okay because we’ll always celebrate mama. Celebrate her life, her faith, her example.
We’ll celebrate when we volunteer or listen to a stranger.
She’ll be celebrated when we drop our change in the red kettle at Christmas or when we send thank-you cards and remember our manners.
We celebrate her everyday because she lives in how we laugh loud and love quiet. She lives in our service, our worship, in our differences and our coming together.
Dementia may steal memories but it doesn’t have to steal our joy or the legacy she leaves.
Happy birthday, mama. Thank you for always pointing to the One greater than you because He is the One whose grace allows us to rejoice in the midst of your loss. He is our Hallelujah song.
Share this:
Surrounded
It’s a celebration. Ten years of marriage. Our son-in-law has it planned, directions and instructions provided. This is what he does. The family planner of excursions, holidays, hikes and road trips. All designed to build those moments into family life that can be lost to the everyday business of life.
We celebrate with them as they renew their vows in a small ceremony on a croquet lawn of an Inn in Highlands, NC. Their six-year old daughter is excited to wear her dress with a bit of sparkle as she will be their flower girl. Our son, 34, told his niece he was the ring bearer.
It will be small, just the immediate family and I’m beside myself with this loving display that was absent from my parents. Lost and found at the same time.
This week could be called sensory overload for me and I know it’s my whole being on high alert for all that’s going on around us.
We are surrounded by work (perceived expectations) and family (self-expectations). Surrounded by happy celebrations of love, new life in Christ and renewed commitments.
Surrounded by news of cancer in a young father, the third in our extended community this year. The third person in their 30’s and 40’s faced with a “Stage 4” diagnosis. From a back ache, a feeling of unrelenting exhaustion, a pain that wasn’t going away; from those everyday malady’s of life they’ve received what sounds like a life sentence.
Surrounded with thoughts of a mother’s continuing decline in Alzheimer’s and a granddaughter entering first grade.
In all of the dire prognosis we look for hope. As people of faith we must proclaim the “better life” that is ahead. We must because we believe it and because we need to tell this to ourselves in those moments of utter grief.
Ron was speaking on Psalm 137, a joy-less Psalm; a couple of verses a prayer to God to destroy others. These are words of despair and grief. He talked about going to a “Celebration of Life” service because the living feel so much better calling it that than “funeral”. Like I feel better being called MayMay than Granny. We do that today. We don’t like the word, the phrase, we change it to what makes us feel happier, younger, better. The facts don’t change: someone died, I’m old enough to be a grandparent.
In Ron’s message, he gave us permission to mourn. Something we seem to want to avoid. As if mourning is empty faith. Than somehow showing our sorrow at our earthly loss isn’t trusting in God.
I don’t like showing those emotions in public, or at all. I don’t want you to see my ugly, crying face, the one that looks weak and needy and sad and lonely. I don’t want you to hear the squeaky voice that trembles with words that are incoherent. But I need to mourn as much as I need the happier celebrations. The ones that speak of abiding love and a little girl holding flowers for her mama.
There’s an old song titled “Ache beautiful” and I realize there is beauty to be found in sorrow, in grief. It is in the midst of this loss where I feel the tender touch of Jesus most. When I am ready to accept his loving care, when I’m ready to admit my need.
We are surrounded by life. The richness of loving and knowing and losing, all making our faith deeper and more complete. All making our life beautiful.
Linking up with SheLoves Magazine on their monthly topic: beautiful.
Share this:
I bought this apple {for mama}
I bought a green apple dish. I’m not fond of green, nor do I collect apples but mama did. Mostly red ones. So I bought it. Because of her, no other reason. I bought it for a mama who has dementia or Alzheimer’s. I’m not sure of the difference or if it matters.
Updates from my sister take us further into this dark place and I can only imagine how much darker it is for mama. Though now, with her memory so gone, maybe things are brighter for her. She isn’t struggling as much to remember what she once knew she’d forgotten. Life is easier for her in that way. I want to believe that.
She has fallen three times in less than two weeks with no particular reason as to why. It meant a trip for blood work and there the struggle became most difficult for my sister. Mama doesn’t remember how to get in and out of a car and screamed when the blood was drawn. I’ll spare you some of the other events of what was once a simple trip. It was less than three years ago when I took her for medical tests and my biggest concern was her getting away from me when my back was turned answering questions.
The latest news of her losing weight signals the disease entering another stage, one taking her further away from this life. Mama struggled with her weight most of her adult years. But this isn’t good news. Not now.
I think of the family we’ve lost in the past six years. Both of Henry’s parents, my uncle who was such a part of our lives, all of them in better shape than mama. Their bodies gave out and hers, well, it’s hard to understand. In fact, I don’t understand it. Not at all.
I bought this apple. This green that looked much darker than I remembered it looking on the website. This dish that seems to be a bit awkward amongst the pottery pieces on my shelf. A new piece that has nothing to do with the collection of apples she had in her house. Yet, I look at it and think of her. Another thing I don’t understand.
Paul of the bible writes of some kind of handicap or disability or limitation. Something that caused him aggravation at the least. Enough that he asked God to take this away. Three times Paul begged God would take this away. Three times God said no. Bigger than God’s “No” is his grace.
“My grace is enough; it’s all you need. My strength comes into its own in your weakness.”2 Corinthian 12:7, the Message
Grace is only given when we need it. I believe it often looks like tears or smiles. It can be hidden in the faded photos crammed into boxes. This grace that is enough. For me.
Share this:
Middle Ground
“I’m living in middle ground.” Micha Boyett, author, Found
AWOL [Absent WithOut Leave; didn’t return by curfew]
ATL [Asked To Leave, typically due to intoxication or other serious infraction]
LWON [Left WithOut Notice. He told someone he was leaving but no exit plan was made and no staff notified.]
It’s one of the first things I look at in the morning. A night log is placed in my box every day with notations on it as to anything eventful at the Center during the night. There’s only one place I look and that’s the first section that will have names listed of men not returning.
Sometimes those words barely cause a flinch and other times it’s a sadness that settles in my heart. The reasons are different. Most times I am numb to it which is contrary to what we teach. It’s not honorable but it’s how I get through this middle ground of joy and grief.
Joy-filled monthly celebrations marking months and years of sobriety. Happy seeing the inner change become visible as the old is shed like a moth emerging as a butterfly.
It was J’s first time with us. A tall man with a gentle smile he sat near the front in my bible class. He was quiet but laughed in the right places, a silent smiling laugh. Were you to see him on the sidewalk, like most of them after a time of rest and good food, you’d be likely to think him a white-collar professional than an alcoholic. He read the scripture one week in chapel. As you’d expect, a quiet reserve.
Next to him name on the night log: LWON. How does a man I barely know cause such sadness in me? I don’t know where he’s from, if he has kids, what kind of work he does, nothing. And still, my heart sighs with knowing he’s gone. Too short a time. It’s not good. Never a good sign.
It’s that middle ground I’m straddling between joy and grief. It’s like standing on the teeter-totter trying to keep it balanced. A shift this way or that, cheers or sorrow.
2000
It’s the same in all of life this balance of living. Living in the before, where memories comfort and the after, when hope and faith paint a better picture. Living in the now with mama is sad and ugly but living in the after, there I see her restored and whole, her mind sharp as ever and she is released to praise again.
Living in the now is today’s reality. It’s not where I prefer, at times, but it’s denial that turns away from today. Today is middle ground and I am caught there. Caught between the glossed over past and a future built on faith. Caught in a today that is bright with promise.
Share this:
Five-Minute Friday {finish}
The line has been set for them. It’s clearly marked, family and friends at the end waiting to congratulate those crossing the finish line.
Some have trained for this. They know the measure, how long they’ll walk or run. They know the course before them and they set out to reach their goal.
Some tasks, some goals have a clear end in sight. A defined beginning and end. Many do not.
I thought her life would head toward its finish line spending more time with her family. Longer visits than the standard week. Visits to our side of the country that would find us exploring more places and doing more projects and sharing life like we’ve never been able to as adults.
To see her now, many would say her life is finished. Alzheimer’s continues to ravage her mind and this woman who gave birth to me, this woman who was recognized by her community for her years of service to the marginalized, this woman’s life as we knew it is gone.
before Alzheimer’s
She lives in a caring place with others suffering this mean disease. When people ask how she’s doing we say “content” because she is.
My heart knows that my mama is not there. And my heart hopes there is still more meaning to her existence. That God allows her breath because even in this state that seems to hold little value, His work is not done.
She has ‘run a good race’ as the Word tells us. But she is not done.
Linking up with Lisa-Jo Baker for her Five-Minute Friday blog party. She provides the word prompt and says GO. We write, mostly unedited, and mostly within 5 minutes. Yikes! To join in, click here.
Living In Graceland 