I’m OK You’re OK

I’m OK You’re OK

After three bouts of violence with Grandma that day, I saw Granddad plopped down on a chair in the dining room and cry. This caregiving is taking a lot out of him - but also adding a lot of character and spiritual strength to him. After his tears Grandma was calm again and he called her to him for a hug.

After three bouts of violence with Grandma that day, I saw Granddad plop down on a chair in the dining room and cry. This caregiving is taking a lot out of him – but also adding a lot of character and spiritual strength to him. After his tears Grandma was calm again and he called her to him for a hug. “Baby you know I love you,” he said. They kissed and I almost cried – but instead raced to get my cellie for a photo.

I showed the photo of the kissing crusaders – Grandma and Granddad – to my co-workers this morning and they marveled at the beauty of the moment. The facebook note I posted with the photo was simply: 74 years married. Still Standing. Prayers up everyone. One-hundred-fifty people had liked it overnight. When I showed my supervisor and another colleague, they also ooooed and awed. I volunteered the back story – that the kiss came after a long day of fighting and managing Grandma’s disease – and they made the moment sweeter.   My supervisor – who has also become a dear friend – Michelle – said my grandparents remind her of her aunt and uncle who were so close they took care of each other all their lives. When her uncle was put in a nursing home, her aunt took a bus to visit him every day. The day her uncle died during the visit, her aunt went home and died of a heart attack less than an hour later. The other colleague, Tracy, said when her father was in the hospital, comatose, the doctors advised her and her siblings to tell him it was ok for him to leave. They each visited and after all eight of them told him they were fine and he could leave, he died within hours.   “That reminds me of when my brother was dying at 16,” I said. “We told him he didn’t have to stay in that body for us. He was in so much pain. The cancer had spread to his lungs.” He died a few weeks after that conversation. “Maybe it’s time we have that conversation with my grandparents,” I wondered out loud.   I remembered giving my grandparents hints that I’m ok. Several times in the past year Grandma looked in my face and asked, “Why are you so sad?” She knows something’s not right in my marriage because she hasn’t seen my husband.  She’d told me to “turn it over to God…let God fight your battles.” But at one point Saturday she looked in my face and said, “Look at those big, pretty brown eyes,” nurturing and cheering me on and she has done all my life. I felt like she survived her life-threatening surgery four years ago just to be alive and help me through the latest heartbreak. My last big heartbreak was almost 20 years ago and she had nursed me back to whole then.   Yesterday when I visited – doing my Wednesday and Thursday evening caretaking stint – I told Granddad that I’m OK. When he asked how things are going on my job, I seized the opportunity to assure him that I’m doing well, standing on my own two feet, feeling secure, unafraid of getting fired or burned out again.   “How did the people act about you taking off early today,” Granddad said, speaking over his shoulder as he stood at the sink washing greens.   “No problem. This job is waaaay less demanding than any job I’ve had before. I’m not in charge, so it’s not all on my shoulders. All I have to do is make sure my work gets done and I put in the hours,” I said.   “What about the people you’re working with? How are they?”   “My supervisor is great! She’s a praying woman. In fact, we pray together every week,” I said.   “That’s a change from that last one you had cursing you,” he said. We both laughed.   “Yep. My mother-in-law told me to not just pray for any job, but pray for my divine job,” I said. “I really feel like this is a divine job.”   With that, I realized I was telling him I am financially secure enough. I’m OK. My mother-in-law has been the moral support I’ve needed, encouraging me, counseling and consoling me as if God put her in place at the door where Grandma will exit.   Maybe later today I will ask my mother what she thinks about us each having that conversation with our elders, assuring them that we’re ok and they are free to go. I think she will say they are seeing and sensing how well we are and they will leave when they feel like they’ve given us all they can and that we’ve received all we can.

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Fixin’ for a Fight

 

 

Granddad got focused on fixing dinner. I had bought my meal, Grandma had enough pre-packaged meals for herself and him, but I knew that busyness was relaxing for him so I didn’t suggest anything else – until I realized her was very tired. He had cooked two pots of greens – one seasoned for today’s dinner, the other unseasoned for freezing. He also pulled three yams from the pantry and asked me what kind of meat I wanted.

 

“No thank you. I’m having chicken for lunch in a little while,” I said.

 

“That’s no problem! If you don’t want to eat chicken again I got steak, fish, burgers, whatever you want!”

 

“No thank you. I don’t eat meat more than once a day because it takes a long time to process – in my system,” I said.

 

Granddad ridicules my uncle for eating all these new-fangled-fancy-schmansy foods, and he’s always scoffed at my mother’s beliefs about food – that nutrition, not taste or any other reason – is the primary reason for eating.

 

“I’ll have your greens and a potato though,” I added.

 

“Suit yourself,” he said.

 

He carefully sat on the stair climber to go into the basement and retrieve meat from one of the three freezers they keep full down there. He also planned to pull cornbread mix from the basement pantry, which has been as full as a community general store ever since I could remember. When I saw Granddad struggling to walk back up the stairs, I realized he was probably trying to get exercise. But he looked extremely tired and I figured he had to be tired after Grandma’s alleged beat down. I still had only heard about these beatings and could not really imagine this frail woman taking him down.

 

“Granddad, why don’t you get a nap in while I keep an eye on Grandma,” I said. “You’re going to need your strength later. You can finish dinner later.”

 

“I’m ok,” he insisted. “I’m going to make some cornbread. This is some good cornbread.”

 

Grandma was at the kitchen sink washing and re-washing a couple of bowls and a few pieces of flatware. She’d dry them off then put them into the dishwasher, take them out of the dishwasher.

 

“Baby what you doing!” Granddad yelled.

 

“Granddad, leave her alone. I can’t pull her off you,” I reminded him. He’d told me that she’s thrown him across the room, that she’d pinned him down to the floor, that their son had had to pull her off of him. But I couldn’t imagine it. I’d seen him fuss and yell at her so much over the years, that the first time he told me she knocked a plate of food out of his hand at church, “showing out”, I jokingly dismissed the episode, saying, “Grandma’s on get-back time.” When he asked what I meant, I’d clammed up. If I’d said, “Granddad you’ve been fussing at her and embarrassing her ever since I can remember. She’s getting you back!” He would have fiercely denied it. He would’ve claimed as he always had, “ya’ll don’t know your grandma like I know her. Ya’ll don’t see what she does.” Then we would have had to address domestic violence, verbal abuse. He would have sworn, as he had before, “I might raise my voice, but I never hit her.” I never said, “you intimidate her with your yelling!” In fact, I had accepted their justification, that this was just the way they communicated, as if they’d developed their personal own language. I’d accepted that many people in their generation were hard on each other, hard with each other. My paternal grandmother was not that way, but I also realized my maternal grandparents had been the way they were since before I was born and who was I to change it?

 

It was only earlier this year that Grandma finally confessed to me, “When he yells like that he makes me nervous, and I can’t think straight.” A couple months ago, I saw her yell at him for the first time and I was more tickled than anything. She’d told him to sit down somewhere and shut up. I went home laughing.

Strength in Weakness

Strength in Weakness

Grandma tells me, "I'm fine - spiritually speaking," and I believe her. I'm glad to see the strength of their faith and their love even as their bodies weaken.

Grandma tells me, “I’m fine – spiritually speaking,” and I believe her. I’m glad to see the strength of their faith and their love even as their bodies weaken.

 

The thing about being a caregiver is that – at least for me, at least for now – the caring doesn’t stop after spending a few hours with my grandparents after work. They are on my mind constantly. Every waking hour it seems, they’re on my mind, I wonder if the nurse arrived on time – or at all; what must I say/do to convince my uncle who lives with them that we all need to know when they’re being left home alone so we can check on them more frequently throughout the day; when and how best do I proceed with managing their paperwork and further ensuring their professional care needs are met now and in the future; when is the next doctor’s appointment; is Grandma ok today or fighting Grandma; what can I do to calm her down; what can I recommend Granddad do to calm her down; do I have a little time at my desk to research tips and resources for caring for an alzheimer’s patient; what about general tips for managing aging parents and all the shifting in interaction that occurs with that. Seems like mind-chattering worry, and maybe it is, but that’s been my reality the past couple of years. Everyday even when I’m not with my grandparents they are with me.

 

One day when I called the house and checked on Grandparents – the singular name I gave them long ago when I realized there are two bodies and two heads of the same being, like Siamese Twins separated – I realized Grandma’s Alzheimer’s disease is only one of many maladies we’re dealing with.

 

The nurse said Granddad was sitting out on the porch. Grandma was in the bathroom and the nurse was telling me she was having a hard time getting Grandma to allow her to apply prescribed ointment to her bottom to treat hemorrhoids. I didn’t know Grandma has that, too, I admitted. The day before I had found that Grandma’s feet are in bad shape. She complained about the mismatched shoes she was wearing hurting her feet. So, I got her to sit down and let me rub her feet. Her heels felt like over-ripe – maybe even bruised – peaches. They were so soft and fleshy I wondered how she could possibly stand on them. I know Granddad’s got aches everywhere – in his right hip and both legs. His ankles are largely swollen, and his eyes burn and stay teary. Granddad takes close to a dozen pills each day, but we are proud that Grandma only takes two – Imodium and a prescribed sleep medicine.

 

With all those maladies, I should be glad they are transitioning out of their bodies. As they have become frail and I see them withering away – their old clothes swallowing their shrinking bodies, their leaning and stumbling giving undeniable assurance that they are slipping away – I now look through them and imagine I’m communicating with their spirit within. Sometimes at night I lay still imaging I’m having a conversation with their spirit not needing telephone lines or in-person presence.

 

One day when I was with them and Grandma went into her rambling mode, I felt invited to communicate with her inner spirit. It was just Grandma and I sitting at the large dining room table, soft sunlight streaming through the partially opened drapes. She began rambling about a supervisor she had cheating her of $100. She went on and on about how this woman didn’t like her, mistreated her and cheated her out of her pay. I tried to bring her back to present time the way my mother suggested: by asking her name and how old she is.

 

“What is your name Miss Lady?” I asked with a cheerful smile.

 

“I know who I am! Charity Irene Thomas!” she said.

 

“Yaaaay! And how old are you?” I continued.

 

She looked at me like I was dumb, paused, then smiled.

 

“I’m fine, spiritually speaking,” she said.

 

Her words reminded me of conversations I had with my dying bestie three years ago. My bestie, dying from cancer, told me “I’m fine. Ray, I’m going to beat this thing!” A few weeks later she was dead, I was puzzled and devastated. But years later I realized she was telling me she was spiritually fine and her cancer would not kill her love of life or her faith in God. She had died still expressing love to family and friends and still encouraging us to believe in God. With that, she had beat the thing.

 

Grandma’s Alzheimer’s and Granddad’s overall decline have been distracting, but overall, I’m sure I will be better off for having walked this walk with them. I’m reminded that we are spirits housed in bodies. After the initial – and frequent – distractions of worrying about their wellbeing I am grateful that I get a chance to see the strength of their faith as their bodies weaken. I see the strength of their love for and commitment to each other despite all the changes in the world around them. I see in them the strength of forgiveness and determination to love.

Baby Steps to Big Adjustments

 

Grandma had recovered from surgery physically, well enough to get around. But she was giving Granddad fits. He needed a break, so I picked her up to attend a Women's Day with me at a church one Saturday.

Grandma had recovered from surgery physically, well enough to get around. But she was giving Granddad fits. He needed a break, so I picked her up to attend a Women’s Day with me at a church one Saturday.


When Grandma was released from the hospital, I was there to help Granddad get her home. As she was getting out of the car, she asked for her cane, but as I was reaching to hand it to her, Granddad said she couldn’t have it.

“She don’t need no cane!” he snapped.

For years, neither of them would use their cane. I started referring to the canes as “walking sticks,” to make the idea more palatable. Grandma would sometimes carry hers along for emergencies, but Granddad would not take his. He insisted that they walk on their own two legs, keeping them strong. Caught between the two of them at the curb, I yielded to Granddad, thinking he knew Grandma – and her strength – better than I. I hooked my arm in hers to help her steady her walk, but he insisted she walk on her own. I stood back privately cheering her on. She made it from the curb to the steps slowly but surely. She made it up the steps, holding onto the rail. She seemed proud of her own strength, and I certainly was.

A few more steps and Grandma fell on her face. I had never felt rage towards my Granddad until this very moment. A man walking past rushed up the steps, helped Grandma back onto her feet, and walked her up the next bank of steps into the house. I felt like God had sent an angel because my ass had punked out. I had allowed Granddad’s fussing to prevail and it left Grandma  face down in the dirt. I rolled my eyes at Granddad, and focused on getting Grandma up the stairs into bed. I was determined to keep Granddad at bay so she could use their stair lift up to their bedroom, but she insisted on walking the stairs instead.

This was not the first time in my life I’d seen Grandma fall. Once, years ago when I lived with them I heard her fall down the stairs on her way out to church one night. I was surprised that she’d bounced up and proceeded out the door. They both valued their strength and resilience.  I respected it and wished I was their brand of strong.

Over the next several months, Grandma regained her strength physically, but I could tell she was changing in other ways. I called to check on her often, and I found her gushing with stories and secrets she wanted to share. Her stories were so interesting – and full of wisdom – I bought a device to record her over the phone. These were stories I’d been trying to get at all my life: what kept you going? Why did you stay married so long if you hated Granddad’s fussing? Why were you so critical? What was life like for you growing up?

Without my asking questions now, she told me about her past and how she was feeling in the present. She wanted to talk more than I had time to listen, but sometimes I made time to allow her to vent.

“How are you feeling this morning Grandma?” I’d ask.

“Sometimes I don’t even want to get out of bed. I wish the Lord would come and take me home,” she said one morning. “I feel like that more and more these days. But I give myself a few minutes to feel sorry, then I get on up and get on with the day.”

The first time she hinted that she feels depressed sometimes took me by surprise. But she instantly seemed more real, more human – beyond her title of Grandma, beyond her role of stalwart in my life.

Over the next several weeks, Granddad complained bitterly about her mood swings and outbursts. He said she was wearing him out, he needed a break. I promised to pick her up on Saturdays some weekends to give him a rest for a few hours. The first time, I picked her up to attend a Women’s Day at a church where I worked through the week teaching English as a Second language to men and women from around the world. The church was less than 30 minutes from where Grandparents lived, and I figured she would enjoy almost any event held in a church.

Grandma was treated like a star in the workshops once I disclosed that she was 93 years old and had been married since she was 21. The women believed she must be sitting on a pot of wisdom, and they pelted her with questions. She mostly smiled, nodded, and gave short answers. I did not think to take notes because I had planned to simply enjoy the day. Although some of the women in the workshops may have felt educated by her bits of wisdom, my lesson came when I took her home.

Helping her out of the car, I noticed she’d had a bout of incontinence. I hadn’t been prepared for what to expect after major surgery, through which most of her intestines were removed. I’d been told that the doctors’ would prescribe a pill to stop her up because modern medicine was that awesome. Either she had not taken the pill this day or it hadn’t worked. I pretended not to see the small mess she’d made on the passenger seat of my car, determined to maintain her dignity. I loved her enough to ignore the mess. I hadn’t thought that much about the ways we show love, the ways we need love, but I was beginning to learn.

 

Grandma, Alzheimer’s and Me – Introduction

In her heyday - before surgery that would change her life forever, before the onset of Alzheimer's - Grandma was tall, elegant, and beautiful. Here she is on one of the many vacations she took with her girlfriends.

In her heyday – before surgery that would change her life forever, before the onset of Alzheimer’s – Grandma was tall, elegant, and beautiful. Here she is on one of the many vacations she took with her girlfriends.

 

In the fall of 2010 my dearly beloved maternal grandmother went into the hospital for “life threatening surgery.” I didn’t really expect her to survive it because a year or so before she had insisted that I pen her obituary. She had told me, “I want you to be prepared…I’m not getting any younger and we’ve all got to go.”  She figured having me write her obituary would help prepare me emotionally for the transition. I was not ready to let go, but I was prepared to put up a show of strength.

When I first visited her in the hospital she was surrounded by nurses and Granddad all hovered around her bed trying to calm her down. When I got inside their circle she looked like a wild woman, not the churchified, dignified woman I had known and loved all my life. She was fighting so fiercely, they were threatening to strap her arms to the bed.

“She’s been fighting all morning!” Granddad said as I stood there probably looking dazed. “They gon’ haft strap her down. That’s all it is to it! She kicked the doctor, throughed the nurse over there and she’s even fighting me!”

I noticed worn brown leather belts in the nurses hands, looked at Grandma, her eyes glazed, hair ruffled all over the place, sheets and blankets crumpled around her. I quickly gained my composure though.

“Let me try something,” I said to Granddad and the nurses. “Where’s a Bible?”

“What you gon do with a Bible? They gon’ haft strap her down if she don’t stop all this foolishness!” Granddad responded. Then, turning back to Grandma, he added, “Now Baby, if you don’t quit all this carrying on, you gon’ be strapped down. You don’t want that do you?”

Grandma fussed something inaudible. She was yelling, saying she had to get home to the babies she’d left on the porch because the mother wasn’t coming back for them and she needed to get in the kitchen and bake a cake because her guests would arrive any minute. I had never seen Grandma any way except polished, prim and proper.

A nurse handed me a small Bible from the night stand and I moved in closer to Grandma’s side so I could speak softly.

“Grandma, what’s your favorite book in the Bible?” I asked.

She looked confused, but my mission was clear in my mind. She loved the Bible. She reverenced it. Ever since she was a little girl going to Sunday School and church she knew she had to settle down when anyone was reading the Bible. I figured that even being out of her mind, her spirit or something deep inside her would call her to be still when the Bible was being read.

“Grandma I want to read you your favorite book in the Bible,” I said. “What is it?”

“Ephesians,” she said.

I opened the book to Ephesians and began reading. I had embraced my grandparents’ Christianity almost 20 years ago, and I’d read the Bible in church and at home, but the words I found myself reading to Grandma to settle her down unsettled me. 

“Wives submit yourselves to your husbands as unto the Lord,” I read, keeping a pleasant voice even as my eyes grew wide with disgust. I was thinking, ‘well here’s the whole problem to your and Granddadd’y relationship right here! He’s been lording over you all these years and you’ve accepted it because of this stuff right here!” But I read on, determined to settle her down. I stepped back from her bed and leaned against the window. Outside it was gray and rainy. I looked across the room and was happy to see Granddad settling down in one of the two orange arm chairs set for visitors. “For the husband is the head of the wife even as Christ is the head of the church, and is the savior of the body.”

Yuck! I wished I had not offered to read her favorite verse. I would have preferred to read her mine, which is Psalms 21. But I was there for her, so I continued reading Ephesians. I read softly, soothingly, leaning against the window frame. I watched as Grandma fixed the covered around herself, then quietly shuffled her pillows. She slid down under the covers and after an hour or so of my reading she and Granddad were sleep. I woke Granddad to tell him I was leaving, but would return in the morning to talk to her doctor. I suspected that Grandma had been over-medicated and that’s why she was so irritable.

The following morning, just hours before she was scheduled to go into surgery, I returned to her room in time to meet with her doctor and Granddad. I demanded the doctor look at the nurses charts. We confirmed that she had been given too much medicine the day before. Grandma wasn’t feisty this morning. My mother and uncle arrived.  A couple of church deacons came in and we formed a circle and prayed for Grandma’s surgery to go well. When the church folks left I chatted with Granddad as my mother leaned over Grandma having a private conversation. I decided to keep Granddad distracted when I realized my mother was working some of her Scientology mo-jo on Grandma. My mother, who was raised Baptist, but turned to Islam then Scientology, loved it all and found useful tools from each. At this moment she was doing something called, “touch-assist” she learned in the Church of Scientology. To my delight and surprise I noticed Grandma become instantly more energetic. When the nurses came to roll her into surgery she left with a joke.

“My obituary is in the punch bowl!” she yelled as she passed me. I laughed and explained to the others.

“She had me write her obituary last year. She must’ve left it in the punch bowl in the ding room where she keeps other important papers.”

It was a bitter-sweet moment. She looked livelier than she had the past few days, yet I remembered her telling me she was ready to die, had lived a good long life and was ready to go anytime the good lord came to take her. The next morning I returned to the room where I expected Grandma to be, having been told that the surgery went well and she was back in her room in recovery. I darted back out of her room and asked the nurses at the station where they’d moved my Grandmother. They pointed me back to the room I’d left. I went back in and realized that was Grandma. I hadn’t recognized her without her teeth and glasses. She was sound asleep, looking frail, pale and half dead. It broke my heart seeing her that way. It would take a long time for me to get used to seeing her that way.

She had not died in surgery, but the strong, sharp-witted, regal woman I had known had. Her decline from there was physical and mental. She developed dementia then Alzheimer’s, but our days together going forward became more soul-enriching than I could have ever imagined. About two years into helping Granddad help her live with the disease, I realized I should keep notes of our experiences.

WARNING: Some of the blogs may be difficult to read, full of anger and acrimony, but that, too, was part of this experience.

When I began telling others about my 95-year-old Granddad being the primary caregiver for my Grandmother who’s suffering Alzheimer’s, I realized most people had their own stories of a loved one with some form of dementia or stories of assisting aging parents. I hope you will feel free to share your stories in comments here and feel free to post links to your blogs on these issues.

On my way to spend time with my Grandparents one evening I noticed a bumper sticker on a car in front of me at the light. It read, “God Chose Me to Be Inspired By a Child With Autism.” I felt blessed that God chose me to be inspired by a grandmother with Alzheimer’s.