No place like home

I made it home – all 2,200+ miles in four and a half days. My home, my cats, my messiness never looked so good! After unloading the car, I stretched out on the couch as if to rest. But, with adrenalin still pumping, I couldn’t relax. Instead, I began unpacking, looking for homes for the stuff I brought from Mom and Dad’s apartment, sometimes asking myself “What was I thinking?” when I unpacked an item that seemed to have no value – real or sentimental.

One of the things I unpacked most carefully was Momma’s coffee maker. Making the perfect cup of coffee was as much a ritual for her as a Japanese tea ceremony. I feel honored to have learned it from her and even more honored to be able to use her coffee-making tools. It’s not some antiquated piece of equipment passed down through generations, but a very 21st-century Cuisinart machine, which I promise to take care of and use just as Momma taught me.

As I write this, I’m finishing my second cup of perfect coffee.

Sue

The road home

I’m headed home again, this time with the finality of driving my car and all my belongings back across the 2000 miles I first traveled in early March. This signifies that my own home will once again be my home base and that trips to see Dad will be of the shorter variety via airplane and rental car. I’m finally over my tears and I’m enjoying the drive and audio book.

Yesterday, I made the short trip from Atlanta to Birmingham to visit a cousin I hadn’t seen for nearly 20 years. We had much to catch up on, but we felt the comfortable familiarity of those who had seen each other only yesterday. I left vowing to stay in touch.

With a bountiful sack of lunch, I left her house around 8:30 and today made it through the rest of Alabama, a corner of Mississippi and Tennessee, and all the way across Arkansas and into Oklahoma – more than 500 miles. I was so tired when I finally stopped that I took the first promising hotel without thoroughly searching its features for “free wireless internet.” Therefore, when you read this, it will be at least a day later.

I walked to the nearest restaurant – a Chinese buffet – again too tired to be picky about what they had (or didn’t have) to offer. It was unremarkable. Tomorrow, with renewed energy, I will search out more interesting road food options.

Although comfortably full from too much lunch and enough dinner, I’m now tempted to visit the ice cream store across the street. Then, I’ll retire early to get an early start tomorrow.

Sue

End of the chapter

Saying good-bye to my father, as I closed up his former apartment and prepared to head back home to my former life, was one of the hardest things I’ve ever done. After loading my car and signing the papers releasing the apartment, I sat in the car and cried. No, no, I thought, I can’t be in tears when I say good-bye to Dad. Recovering somewhat, I went into Dad’s building and found him eating dinner in the dining room.

“Dad, you know I have to leave tomorrow and drive back to Utah,” I said. He didn’t look too surprised. Good, I thought, he understands what’s going on. “Is there anything else I can do for you before I go?” I asked.

He looked thoughtful, started to say something, but couldn’t find the words. In little bits and pieces, I finally understood that he was frustrated with his meals – not what he ordered. Well, one of the nursing staff, who doesn’t yet know his likes and dislikes, had filled out his meal order form for the week, and, although I had made corrections after it was submitted, my corrections obviously were not followed. When one of the dining staff showed up, I reminded her of Dad’s likes and dislikes. This seemed to placate Dad, but I’ll follow up with an email just in case.

When he had finished eating, I walked him back to his room, got him into his recliner and asked if there was anything else I could do for him. He seemed to want to say something but nothing coherent was coming out. Finally, I asked, “Do you want to see what’s on TCM tonight?”

“Sure,” he said.

I turned on the TV. Good, a western! Then, I said, “Well, Dad, I have to hit the road.” I kissed him and said, “You take care of yourself, and remember, I’ll be back in six weeks!”

He said, “Well, you say hello to the folks.” I guess he meant my husband and sons, none of whom are home, but I said I would.

Then, hurrying to leave, I said, “Say prayers for me the next few days.”

He seemed to want to say something else, but by then the tears were coming back and I had to get out of there. “Bye Dad,” I called and hurried from the room, closing the door behind me.

I’m no good at long good-byes, and with Dad’s communication difficulties, there’s no such thing as a short good-bye. I could hear him calling after me, “Hey, wait…” but I was gone, tears splashing down my cheeks as I ran down the hall.

I boo-hoo’d to Buford, a one-hour drive, looking in the mirror at stoplights to see what damage I was doing to my eyes. My already-congested head was impossibly stuffed up, and I kept telling myself to stop, but I guess I needed a good cry, a catharsis. It was as though I was grieving for both my parents, the one lost forever to cancer, the other lost to dementia, though his physical self is still alive.

Tomorrow I will begin a 4-5-day drive to Utah, the end of my creative caregiving adventure. The next chapter will involve caring from a distance, managing remotely, quarterly consultations…at least until the needs change.

Heaven protect me from my negative thoughts, but I have found myself wondering what I will do when I get the call that Dad is in the hospital, or has been diagnosed with cancer, or…. Will I once again pack my car and head for Atlanta for an indefinite period of intense caregiving? I don’t know the answer, but I am thankful for the blessings, in the midst of trauma and sadness, during the past six months.

Sue

Ancient whiskey

As we’re cleaning out Mom and Dad’s apartment, it’s not only Mom’s stuff that must be sorted and disposed of one way or another. There’s also Dad’s stuff that he can’t – or shouldn’t – have in his new memory care quarters.

Among our finds were two bottles of whiskey that Dad had collected and saved for who knows how long. One is Sam Thompson Old Monongahela Pure Rye Whiskey, circa 1917, in a pint bottle labeled “for medicinal purposes only.” I’ve been told that 100 proof rye whiskey of that era caused hallucinations. I wonder what it was supposed to cure.

The second bottle is Old Crow Whiskey, made in 1908 and bottled in 1925. Both bottles have been opened, who knows when or for what special occasion. But I can imagine my father in his younger days taking great pleasure in pulling out these collectables and offering a sip to a special guest.

Back then, Dad usually had a bottle of moonshine, too; corn liquor so potent that it would make your head smoke. I can remember when my husband was courting me we’d spend an occasional evening playing poker with Mom and Dad. After many rounds of poker and many drinks (but who’s counting?), Dad would pull out the moonshine. My boyfriend/husband-to-be was impressed and still loves to tell our friends about his father-in-law’s stash of ‘shine.

I’m not sure I want to know how much that influenced his decision to marry me!

Sue

Momma's mirror

Among the treasures I’ve saved to remind me of Momma is her little mirror. It’s about 2x3 inches in a leather frame. It’s the mirror she kept in her purse and the one she took to the hospital when she had her surgery in March.

After surgery, in which the doctor removed part of her jaw, lymph nodes and the inside of her cheek, I dreaded the first time Mom would look into a mirror. This once ravishingly beautiful woman, still vain in a quiet, understated way, would be horrified and depressed, I feared, when she saw her disfigured face in the mirror.

Yet, I couldn’t stop her from looking, or protect her from her own reality. Nor could I control her feelings. All I could do was pray for courage and acceptance. Prayers were answered. A day or two into her recovery, she asked for the mirror. She studied herself, moving the mirror this way and that to get a full perspective. She didn’t cry or express any of those emotions I feared, emotions I was feeling myself. She accepted and fought for her precious life – in the ICU, in the rehab hospital, and in the nursing facility – up until the very end.

I told Sis I would be the keeper of the mirror, our symbol of courage. I told her that if either of us ever faces disfigurement – or just ugly old age – the mirror will be there for us, to remind us of Momma’s example

Now all of this presumes that as I age and grow ugly, for whatever reason, my mind will still be intact. Will I remember the mirror? Will I know where to find it? Will I be too confused to care?

You may not be around for that late episode of this story, so you’ll just have to remain in suspense.

Sue

Fuzzy photos

My parents’ packrat tendencies must have been passed down to Sis and me for we simply cannot toss the detritus of their lives without carefully examining it for practical or sentimental value. That includes boxes and boxes of photographs.

The most intriguing photos are fuzzy with age (or is it our eyes?) – photos of Dad and his family at the beach, circa 1932, our none-too-svelte grandmother draped glamour-girl style on the hood of an old Ford, with approximately 10-year-old Dad standing solemnly to the side; photos of Mom’s mother and classmates from college, circa 1917; and photos of grandparents and unrecognizable aunts, uncles and cousins. What’s the fascination with pictures of people we never knew? I suppose I have some hope that as I piece together the family history, I’ll have faces to go with the names. Yet, most of the photographs are not labeled and, unless we connect with some long-lost cousin who can identify them, we may never know who they are.

There are also boxes and boxes of photos of Maggy, the miniature Schnauzer that dominated Mom and Dad’s life after we kids had left home. When I confessed that I had been jealous of Maggy, Sis said she felt the same way. When we’d invite Mom and Dad to come and visit us, Maggy was often their excuse for not traveling. As we looked at hundreds of Maggy photos – at the groomer, at the vet, posed on a fur rug, wearing a sweater, or fetching the newspaper – Sis or I would exclaim, “They never took pictures of us at the pediatrician or the hairdresser! They never posed us on a fur rug!”

But we don’t really begrudge the love Mom and Dad focused on their dear Maggy. It’s the same love and nurture that characterized their whole lives, including love for us kids and their many friends.

Sue

150 years old

Today I attended the ice cream social for residents of assisted living and memory care facilities where Dad lives. With early rock music playing in the background, Dad slurped his root beer float.

Meanwhile, the affable doctor who lives down the hall from Dad stopped to talk to me. He said he thought Dad looks pretty good and asked how old he is.

“He’s 84 years young,” I told him. “How old are you?”

“I’m 150,” he said, “but people tell me I don’t look that old.”

“That’s remarkable,” I said. “You’re in great shape for someone that age.”

“Well, I still box,” he told me, “even younger guys. I’m still pretty strong,” he said flexing his muscles.

All through this conversation, he was moving in time to the music. It was all I could do to control myself, to keep from getting up and dancing with him.

“What kind of doctor were you?” I asked.

“A pediatrician,” he told me. “And I still practice. The kids love me and some call me by my first name.” Looking at Dad, he pronounced, “I think he’s having trouble with his eyes. But he seems to be in good shape. He gets around, but I’m faster.”

Sue

Community

I am part of many communities, but none has been more precious to me in the last six months than my faith community. Though separated by 2000 miles, I have felt them beside me as I drove solo across the country, as I sat with my mother in hospital rooms and nursing centers, as I cared for my Parkinsons-impaired father, and as I celebrated the release of my mother from pain and suffering to the peace of God’s kingdom.

My bothers and sisters in Christ prayed for my family, sent me encouraging (or funny) emails, pulled weeds in my yard, picked me up from the airport, called to cheer me, sent cards, delivered food to my door, and asked with true concern how I was holding up. These were acts of love and a demonstration of community as I believe God wants us to live it.

We are all connected by shared life experiences. Those who have lost a parent or other loved one know how it feels and know what I needed. Now that I have been blessed with their kindness, I must return it. Not that I haven’t prayed for others and tried to serve those in need, but I’ve also missed a lot of opportunities. How often have I been just too busy or preoccupied with my own little challenges to even send a card? And how often has my prayer list stretched into the night and put me to sleep?

I promise to do better. Now I have a story to tell that may help others as I have been helped. I will never underestimate the power of prayer and tiniest gesture of love.

This weekend I am with my faith community as we celebrate the church’s 50th anniversary. Current and former members, some traveling long distances, shared a meal and some fun. But I believe it’s those shared life experiences and expressions of love over the past 50 years that are cause for celebration.

Sue

Separation anxiety

During this respite from eldercare, I’m supposed to be resting, relaxing, and refreshing my reserves of patience and compassion. God knows I’m trying. But I’m also feeling a bit anxious – Is Dad getting the assistance he needs at bedtime? Is someone taking him to the dining room for dinner and how is that working out? Is he feeling alone and sad?

I knew the nursing staff would call me if there were an emergency. Nevertheless, I worried and wondered. Finally, after being away for four days, I called. “How’s Dad doing?” I asked the nurse.

“He’s fine,” she replied. “He’s sitting right here having lunch. Would you like to speak to him?”

“Sure…Hi Dad,” I said. “Are they treating you well?” (slight pause) “Yes,” he replied.

It was a brief conversation because Dad can’t easily find the words for a real conversation. But he did ask, “When are you coming home?”

“Next week,” I replied, not having the heart to remind him that my “home” is here, not there, and that next week will be my last time with him, at least for a couple of months.

I felt a little better the next day after Sis reported on her visit with him. He seemed well adjusted and content. There was just one thing bothering him – money. “For what,” Sis asked.

“For a haircut,” Dad replied.

“When will you get a haircut?” Sis asked.

“When I have the money.”

If that’s his only concern, I guess I can rest easier now.

Sue

The strangeness of home

It’s easy for me to write about my father’s confusion and paranoia. He’s 84 years old and has Parkinsons Disease with dementia. It’s not so easy for me to admit my own cognitive dysfunction.

It’s hard to talk about because it’s so scary. Am I in the early stages of dementia myself? Is it simply the mild but increasing forgetfulness that most people experience as they get older? Or is it a strictly temporary condition brought on by the stress of my mother’s death and caring for my father? Whatever its cause, it’s quite unsettling.

I flew home this weekend to spend a week before returning to close down my parents’ old apartment. It’s been about ten weeks since I was home for my last respite visit. A student has been housesitting and taking care of the cats, so it didn’t surprise me to find a few things out of place – knives in a different drawer, cups and glasses arranged differently, a trash basket missing from my office. That sort of strangeness was easy to explain.

But then, I pulled a fork from the drawer to eat my dinner, and, as I held it in my hand, it seemed wrong. I looked at all the other flatware; it was the same. However, a few of the serving spoons were of a different, more familiar pattern. Which was the more current set? Had the housesitter found the old set stored who-knows-where and decided to switch it out? Why couldn’t I remember this flatware?

I carried the fork to the next room where my husband was working, and asked, “Is this our most recent flatware pattern?”

“Sure,” he said without hesitation. Now, how could he be so certain when he’s been away from him for seven months?

Where do minds go when you lose them? What must I do to find mine?

Sue

Enduring habits

As I was eating dinner with Dad last week in the Memory Care dining room, I observed his fellow residents, all of whom manifest various levels of cognitive dysfunction. But despite their disabilities, most of them retain remnants of their former personalities and habits.

For example, there's the affable doctor who can still carry on a good conversation - with himself or others. Then there's the busy little woman who can't seem to sit still for very long; she seems driven to serve, moving from table to table as though to offer assistance but never quite articulating the offer or interacting in a meaningful way. And then there's my father who cannot leave the table without first pushing in his chair, even though he nearly loses his balance in doing so.

I've also observed residents in the skilled nursing wing whose Alzheimers or Parkinsons disease has progressed to the point that they are nearly comatose. This makes me thankful for every small way Dad is able to function in the activities of daily living for it may not last much longer.

Sue

A smooth move, indeed

Dad slept little last night, and who could blame him? Unable to reason through the changes that were about to engulf him, he was overwhelmed with anxiety. I was anxious, too, and still on a guilt trip of epic proportions, worrying against all reason that I was doing my father a major disservice to move him to “memory care.”

I had told Dad I would wake him up a little earlier than usual. Maybe that’s what prompted him to get up at 2:00, 4:00, and 5:00 (approximately). Each time, I told him to “go back to bed – it’s not time to get up yet.” Finally, at 6:30, I got up showered.

About 10:00 a.m., the Smooth Moves truck arrived with a couple of guys to carry Dad’s heavy furniture from one building to the next. It took less than the two-hour minimum charge. Dad, sis-in-law, and I followed the last load, with Dad asking, “Where are we going?”

We walked into the new apartment – a living room, hallway, bedroom, and bath – and, even without pictures and other homey touches, it looked wonderful. We had mapped out where the furniture would go and everything was in its place. The only things Dad seemed to miss were the refrigerator and the telephone.

Then, leaving Dad to eat lunch with his new neighbors, we began hauling the small stuff, clothing, and decorative items and making the place feel like home. By the time we were through hanging the last picture, it was after 5:00 p.m., and I had logged more than 11,000 steps (5+ miles) on my pedometer.

We took Dad to a Chinese restaurant for dinner and to celebrate Sis’s birthday. Dad was so tired he was barely able to stay in his chair. I could have crawled under the table for a nap, too. But on the way home, he asked, “Do you like ice cream?” It doesn’t take an expert linguist to translate that to “Let’s go get ice cream.” So, I drove around until I found a Brewster’s ice cream store. I found enough change in my purse for two cones.

Soon I began feeling like I’d make a major mistake. Eating ice cream before it melts, when it’s 96 degrees outside, is not easy for an average person. But take someone like Dad, with Parkinsons, who does everything in slow mo, and you’ve got a mess that would rival a two-year-old’s. But Poppa was in slurpin’, sloppin’ heaven, so I just sat there grinning and trying not to worry about my upholstery.

It didn’t take long to get Dad ready for bed. This is the first night in more than two months that I’ve spent away from him. I pray he sleeps soundly. I know I will.

Sue

'Twas the night before move-in...

There are a zillion things I could be doing to prepare for my father’s move to his new apartment tomorrow. But I’m afraid that all the commotion will make Dad uneasy. Then, he might not sleep well, which would mean I wouldn’t sleep well either. It is as much self-preservation as empathy for Dad that makes me want to have a laid-back kind of day.

On the other hand, I think, I might try engaging Dad in a bit of the work. Cleaning out his bedside drawers, where several years worth of old receipts are stashed, would be a good project for today. No, I decide; decisions about scraps of paper would likely end in an argument, and I want to be calm to help him stay calm.

Instead, I aim for a normal day – a nap late morning, lunch, sitting on the sun porch, watching a little TV, and then dinner – Sis-in-law’s fabulous ravioli with a side of lemon-herb broccoli.

It was after dinner that reality set in and Dad finally found a voice and words to ask questions: Where is this new place? What’s the layout? Who will live there with me? Will I have to share a bathroom? What…no kitchen? No refrigerator? What if I want something to eat or drink? Will there be nurses meddling in my things? Will there be a lock on the door? Will I have a telephone? Who decided I wouldn’t have a phone? How much will this place cost?

Most of these were pretty reasonable questions and I answered each one truthfully but as simply as possible. I also explained that a CNA will stay with him tomorrow while the movers and “his decorators” – me and the sisters – get his suite ready for him. Then we’ll take him down there.

I hope and pray he’ll be pleasantly surprised and that all of us will be blessed with patience and grace as we go through this transition.

Sue

Sorting

I’m glad my parents have moved three times in the past 10 years. At least Sis and I don’t have 40 or 60 years worth of stuff to sift through as we move Dad to his small Memory Care suite. On the other hand, my parents are packrats; enough has been saved from all those moves to make the current task daunting.

Last week we tackled Mom’s drawers and closets, filling several bags for charity and an entire suitcase of clothes for me. Thankfully, Mom had great taste in clothes and her jackets and sweaters sometimes fit me. We also filled a bag of clothing that is quintessential Momma. These items will be cut and diced to make “Momma pillows,” memorials to the fun, creative, charming woman she was. Sis, her partner, and I will reserve a special day before I leave town to create and remember.

Tucked among the undies, the Poise pads, and plastic baggies filled with scarves, we also found receipts verifying the purchase price of jewelry, old family photos, and other small items obviously valued and carefully saved. It made me wonder why, if we value such things, we tend to stick them in a drawer and never look at them again.

We also cleared out a few of Dad’s drawers where he had stashed old mail and receipts that he thought might be valuable but couldn’t figure out what to do with. The stash included his father’s social security card and other personal papers and photographs, as well as plastic baggies filled with old dentures.

When we had nearly finished our work for the day, Dad came into the room, looked uneasily at our piles of stuff, and headed into the closet. “What are you looking for, Dad?” we asked.

“I hope you haven’t gotten into it,” he replied with a wild look in his eye.

“What is it, Dad?” we asked, fearing that we had, indeed, gotten into it and either hidden or disposed of whatever he was looking for.

“Treasures,” he replied mysteriously.

He soon emerged from the closet with a small, old briefcase. He put it on the bed and carefully opened it to reveal a collection of coins. We persuaded him that these things should go to the bank to the safe deposit box and he reluctantly agreed after we assured him that he could go, too.

Among the coins was a business envelope that he held in his hand. “What’s in the envelope?” I asked.

“A thousand dollars,” he said. My heart sank. Was it another check too old to cash? But when I gently took the envelope from him and opened it, I found a four-year-old statement from the rental office at the apartment complex where Mom and Dad had lived.

“This is just a statement, Dad,” I explained. It’s meaningless now. You haven’t lived in that apartment for four years. It’s not necessary to keep it. Since it has your name on it, I’ll just go shred it,” I offered.

“You’re just so eager to shred things,” he grumbled.

He ain’t seen nothin’ yet!

Sue

Change

Change is hard for just about anyone. But imagine you’re 84 years old; you have Parkinsons with dementia and paranoia; your wife of 61 years has just died; and your daughters are taking over your finances and putting you in a “memory care” facility. Such is the major life change my father is experiencing.

Sis and I are trying to be as gentle as possible. We give Dad enough information to feel confident we’re taking care of him, but not so much that he becomes overwhelmed. It’s a delicate balance. Last night he asked me to “tell me everything you know about what’s going to happen…this place I’m going…”

I drew him a diagram representing the continuous care community where he and Mom have lived for the past three years. I demonstrated with arrows on the diagram how the facility is designed to meet changing needs from independent living to assisted living (and memory care) to skilled nursing. I reminded him that Mom was able to take advantage of the skilled nursing services, and that all those levels of service are here for him, too. As gently as I could, I reminded him that he cannot live alone, and that Sis and I must make sure he gets the help he needs. He studied the diagram for about an hour, then asked me to explain it to him again.

Moving day is Monday. I’ve arranged for a home health aid to stay with Dad while Sis, her partner, and I work with the movers and get the new place looking as much like home as possible. Then, we’ll all go out to dinner – an early birthday celebration for Sis. After dinner, I’ll help the staff in his new place get him settled for bed.

All this change isn’t much easier on me. I’m a nervous wreck thinking about Dad’s potential reactions to his first night in his new place. Will he notice right away that it’s a “lock-down” unit to keep residents from wandering? Will he look at the other residents – most with Alzheimers – and think he’s been misdiagnosed? Will he be frightened to stay there “alone” that first night? Will he be terribly angry with me the next day?

In rational moments, I know I’m doing the right thing for the right reasons. I just have to keep reminding myself.

Sue

Take care of yourself

I remember, after my brother died in 1990, everyone told me, “You’ve been taking care of everyone else. Now take care of yourself.” I had no idea what that meant.

A well meaning friend gave me a certificate for a free manicure. As I sat there with wet nails, tears streaming down my face, unable to wipe my dripping nose, I thought, “This ain’t it.”

I consulted a pastoral counselor who advised, “Taking care of yourself is about doing something you love.” At the time, I had given up all hobbies to work full time and care for my husband and kids. A respite for me was an hour at the grocery store all by myself.

But this weekend, Mom’s memorial service behind me, I decided to take care of me. So I got out my paints and a bunch of 4x6-inch watercolor cards and painted my heart out. As I painted, I thought about Momma and Poppa. I thought about the cruelty of Mom’s cancer and Dad’s dementia. But I also thought about happy memories. I painted abstract shapes and patterns, layering colors and shapes until I had something interesting. Hmmmm….interesting to the painter, but….

After a good night’s sleep, I looked for subjects in the abstract paintings. Two emerged. One painting shows Momma running in the rain with hair straight as a board. It’s called, “It had no sense of curl,” quoting my father’s explanation of Mom’s nickname, Curly.

The second shows Momma with a bird on her head. It’s tentatively titled, “Kill it, clean it, cook it,” a reminder of what may be a misremembered story from Mom’s childhood. So far, I’m the only one who recalls it.

I still have at least a month of tense moments ahead, including the tasks of moving Dad and closing the apartment. I also have new ideas for more therapeutic paintings.

Sue

No sense of curl

We held a memorial service for Momma on Friday in the dining/living room of the skilled nursing unit where she spent the last two months of her life. It was a time filled with love, memories, and the assurance of God’s grace. Friends, family, and nursing staff packed the small room.

Led by the chaplain from our hospice company, who had prayed with Momma and the family on several occasions in the last few weeks, the service was sweet and simple. I hope Mom liked it. Since I couldn’t find a pianist, we played music from my own church choir on CD, and, at the end, we sang Amazing Grace a cappella with Sis and me trying to keep everyone on key.

There was a time for remembrances during which Sis and I spoke about Momma. Though we had not compared notes ahead of time, our talks were complementary, not repetitive. Between the two of us, I think we painted a wonderful picture of our wonderful mother – beautiful, funny, kind, sweet, sarcastic, organized, perfectionist, loving, caring, entertaining, and a great cook!

My father’s Parkinsons disease has limited his ability to speak above a whisper and to find the words he needs to express himself. We did not encourage him to even attempt to talk at the service. However, when he and the rest of us met with the chaplain several days before the service, he shared a story about how Momma came to be nicknamed “Curly.”

“It was on our first date,” Dad explains. Long pause…we all wait patiently… “It was raining,” he continues. Long pause…we’re becoming impatient…

“Did her hair get frizzy?” one of us suggests.

“Or did it fall flat?” another of us prompts.

Another long pause as Dad searches for just the right words. Finally, he explains, “It had no sense of curl.”

Sue

Family Ties

Some years back, when my husband and I became interested in genealogy and began tracing our family histories, I was amazed at how little my parents knew about their own families. They couldn’t remember names of aunts or uncles. They knew little about their grandparents. And, there were certain “black sheep” about whom they knew next to nothing.

Now, here I am, writing my mother’s obituary, and without my genealogy notes, I have trouble recalling my grandparents’ real names! Is it my aging brain or aging-brain-under- extraordinary-stress that causes such a lapse? Whatever it is, it helps explain why family history research can be so frustrating. A stressed out daughter gets a name wrong in the obituary and future generations wonder whether their ancestor was married twice, or if that wife was really named Millie, Mildred, or Millicent.

I regret that my extended family has become so disconnected over the years. I’ve lost touch with cousins I was close to growing up. My mother had even lost touch with her brother and didn’t find out about his death until some months afterward. I made the effort, before Momma died, to tap into her cousin network. Though they were sorry to hear about Mom’s condition, they were delighted to reconnect with us, to pray with us, and to spread the news to other cousins. From these connections I learned about other cousins who had died as well as new cousins (grandbabies) born.

I won’t be disconnected again, I promise myself. I’ll update my address book and at least send Christmas letters to the cousins, I vow. And before I lose my mind completely, I’ll update my family history files so that my kids and grandkids can find our cousins for important family announcements, including my own passing.

And perhaps while I’m still healthy, active, and mobile, I’ll organize a grand reunion to get reacquainted with the cousins. It seems such a shame to let those old relationships simply die of neglect.

Sue

De-stressing

Unlike some people whose bodies immediately register stress in the form of specific aches and pains, I’m usually oblivious to the ravages of stress on my mind and body. This is not a good thing. Symptoms like pain I can deal with, but the stress lurking below physical thresholds and consciousness is sort of like passive-aggressive behaviour; you think you’re safe and then it bites you.

On the other hand, with all we’ve been going through in the last several weeks, leading up to Mom’s death, how could I not be stressed? And last week, I didn’t even have time for my Curves workout. So today, I employed a pre-emptive strategy to deal with the stress that I know must be ready to attack. I went to Curves, worked extra hard, and then stretch for a luxurious amount of time.

I’ve learned how to give myself a back massage: Laying on my back with knees bent and feet flat on the floor, I raise your butt and then my back so that my weight is on my shoulders and feet. Then I rotate my shoulders and arms forward and backward to work out the kinks in my upper back. Exquisite agony! Then I roll down my spine until my back is again flat on the floor. Do this a few times and you’ll feel almost like you’ve had a massage.

Then, after picking up Mom’s ashes at the funeral home, I parked the car in a nearby village and explored the local art shops and galleries. Although I saw nothing very inspiring on this jaunt, just walking around and not feeling rushed was relaxing.

Finally, I took myself to lunch – soup and salad at our favorite diner – and lingered over my iced tea listening to oldies from the ‘50s and ‘60s in the background.

It wasn’t the spa vacation I really need, but, hey, it’s a start.

Sue

Momma and the birds

I don’t think I really believe in reincarnation. However, I do believe in the interconnectedness of the universe. Therefore, it’s not too much of a stretch for me to see signs of Momma all around me – in the bird flying by during my morning prayer, in the pigeon cooing outside the sun porch.

There was a special place in Mom’s heart for birds. She collected little birds and ducks. She loved watching humming birds in the garden and the ducks on the pond. She delighted in the birth of the baby ducks and their nurture by the momma duck.

Thinking about Momma and the birds reminded me of an old story she once told me. She and her cousins once caught pigeons in their aunt’s attic, killed and cleaned them, and then roasted them. Now, this may strike some as a horror worthy of PETA’s attention. However, in the context of country life and raising chickens, Mom and her cousins were simply doing what they had seen their parents do over and over again.

As Mom is reunited with the souls of those cousins, aunts, parents, and, I would imagine, the pigeons, I hope there are no hard feelings.

Sue

Compassion capacity

It has seemed throughout this long, five-month ordeal of my mother’s illness and caring for my father that my physical limits (just plain tiredness) limited my capacity for compassion as well. I’d find myself getting impatient, even angry, with Dad when his slowness, due to the Parkinsons, kept us from spending time with Mom. My daily prayer was for an extra dose of patience and compassion.

Now that Mom has passed, my patience and compassion for Dad are back to adequate levels. I can give him extra time for naps, bathing, eating, and other activities without feeling torn apart by the need to spend time with Mom. Dad is so vulnerable right now, having lost his wife of 61 years, his caregiver, the one he trusted to take care of his banking and bill paying (though Mom was barely capable of doing that before her illness). His dementia may protect him, in a sense, from the devastation of the loss, but I can already see physical signs of stress.

As we gathered around Mom’s bed on Friday evening, just after we watched her last breath, Dad turned to me and asked, “What’s my first name?”

Sue

End of the vigil

After our three-day vigil, Mom finally stopped breathing on Friday evening at 7:11 p.m. We were all there, placing carryout orders for dinner, when Sis’s partner said something like, “This is it…gather around.”

We made sure Dad was standing by the bed. All the rest of us, including my older son and his fiancé, were there, too. Mom’s chest, which had been heaving with the effort to breathe, became still. Moments like that should be silent, reverent. But I’ll always remember the sound of rushing water – the toilet that wouldn’t stop running in the adjacent bathroom. Sis noted that Mom had always loved the ocean; maybe this ocean-like sound effect was especially for her.

I had made prior arrangements with a local funeral home for Mom’s cremation. The on-call hospice nurse was to come and prepare the death certificate, then call the funeral home representative, who, I was told, could be there in 10-15 minutes. However, due to traffic, the whole process, took about three hours. Finally, we said our last good-byes to Mom, draped in red velvet. Mom’s face was relaxed; death had removed all wrinkles and worry lines. I had always thought that was a trick performed by funeral directors.

At about 11 p.m., we all arrived at the nearby all-night diner, where we nourished our bodies and souls. There were many laughs over family memories and other stories, all part of the grieving and healing process.

When I finally got to bed at about 12:30 a.m., I thanked God for the blessings of family; for the many caring people who surrounded us all day; for Mom’s life and her care for all of us; for music and laughter in the midst of sadness; and, most of all, for the hope and assurance of life eternal.

Sue

Powerful spirit

This is the first time I’ve been this close to someone who is about to die. I’ve wondered if and how I would know when Momma’s spirit makes the transition. If I were sitting and watching, I’d surely know; I’d see her breathing stop.

Perhaps there would be other signs. Like a few days ago, when Sis and her partner were in Mom’s room and the TV turned on every time Mom tried to speak. The first time it happened, they turned the TV off, but then Mom spoke again, and the TV turned back on. Both times it was not on a channel, just gray fuzz.

The next day when I was with Mom, she raised her arms toward the TV on the wall and tried to sit up. She said, “I’ve got to go up there.” I said, “Don’t worry, Mom. You’ll be going up there soon.” But it was only later that I connected “up there” with the TV and the gray fuzz.

At this moment I’m in Dad’s apartment in the building next to Mom’s nursing center. It’s about 1:00 a.m. and I can’t sleep. I got up to empty my bladder, and when I went back to bed, I had a pain in my back, between my shoulder blades, so intense I thought I was having a heart attack.

I don’t really believe it’s a heart attack. But I won’t be surprised to soon hear that Momma has passed. I can believe that she’s grabbing me, holding on for dear life, as her own heart races and then stops. Sis and her partner are with Mom, to assure her that it’s OK to go when it’s time. I’d be there, too, but I’m afraid to leave Dad alone. Perhaps I’m imagining all of this, but when I listen to him breathing, I’m hearing an unusual restlessness, some undecipherable talking in his sleep, and I wonder if Mom is grabbing at him, too.

Sue

"I'm pulling for her"

People ask me every day, “How much does your father understand about your mother’s condition?” Then, they’ll say something like, “He’s going to be lost without her.”

Truth is, it’s hard to know how much he understands. He sees what we see. He hears most of what we hear, including the very open discussion with the palliative care team, in which we were told, “three to eight weeks.” That was three weeks ago.”

Last night as we stopped by Mom’s room after dinner to say goodnight, she was sleeping peacefully. Dad asked quietly, “Is she deceased yet?” I said, “No, Dad, can’t you see her breathing?”

“Well, I’m pulling for her,” he said firmly.

He’s pulling for her to get well and the rest of us are praying that she’ll pass quickly and without pain. We’re pulling for her, too, but I don’t think Dad would agree that we’re pulling in the same direction.

After Mom dies, Dad’s life will be very different and I have no idea how to prepare him for that. We just have to take one day at a time and treat him gently.

Sue

Smiley Face

If I had a gun right now,
I’d shoot the smiley face balloon
Bobbing over my mother’s bed.
With a grotesque grin it watches
Puffy, shallow breaths proving
Life still beats in a chest
Riddled with veins feeding the
Demon cells marching relentlessly
Toward their own demise.
Mother will soon be grinning, too,
The last laugh as she flies away
Leaving death behind.


Sue

A foot in each world

A hospice agency gave us a little booklet on what to expect as Mom nears death. It’s been extremely helpful to recognize and accept her lessening appetite and her varying states of consciousness and drowsiness (mostly the latter).

The booklet says that the person is going back and forth between life and death in a sense, already seeing people she hasn’t seen for a long time, and recalling things from the past. Mom also talks to herself but we have a hard time hearing the words, let alone understanding them.

Yesterday, she told me clearly that a woman came to see her, and I asked her who it was. She couldn’t tell me but said, “We’ll have to find out.” I wanted to ask, “Was it your mother? Was it your best friend, MJ?” I can’t help but wonder what her reunion with those and other dear long-passed people will be like.

Sue

Shift the pain

If you’ve ever watched someone die of cancer you know that it’s a horrible way to go. Sometimes I wonder if it would be any different if Mom’s cancer were in some unseen internal organ, rather than hanging around her neck like a gigantic goiter on a tree trunk.

Thanks to pain medications, Mom doesn’t have to feel the relentless march of the cancer around her neck, her carotid, and into her lungs. With increased pain meds this week, she’s living in a zombie-like state, waking and smiling when someone speaks to her, then dozing off again, perhaps after a nonsensical effort to talk. When meals are served, she’ll eat a few bites with help, but quickly loses interest.

This morning when I first went to her room, she said, “I don’t know what’s wrong with me.” What could I say?

“Are you in pain?” I asked.

“Oh, no,” she said, and dozed off.

My sister, who has been hospitalized all week, first with gallbladder surgery, then pneumonia, saw Mom today for the first time in a week. Though I’ve been keeping her informed of Mom’s decline, she still was not prepared.

I’ve found myself wondering if they’re giving Mom too much pain medication. Would she be a bit more awake and communicative with less medication? Then I realized how selfish I am to want Mom to be able to keep her eyes open and speak to us. The pain is now ours. She deserves a rest.

Sue

Charm and Sex Appeal

I read my horoscope in the newspaper every day. I’m amused when there is some congruence with the reality of my life. But I’m even more amused at the incongruities.

Take the last few days, for example. On Saturday, horoscope writer Jeraldine Saunders told me, “Your need to indulge in sensual animal pleasures and expensive playthings can be a focus point but might be a point of contention, too.”

Somehow sensual animal pleasures and expensive playthings don’t seem to fit my current lifestyle, living, as I am, among nursing home patients and others with dementia. My husband who is far away and slaves away to support me should be relieved.

Then, today, Jeraldine told me, “Charm and sex appeal are your calling cards today, and you may even be a bit embarrassed by the stir you create. Beneath that, however, you offer solid friendship and loyalty.” So far (but the day’s not over), none of the nursing home residents has seemed to notice my charm and sex appeal. But if anyone did, I guess I would be embarrassed.

Guess I’d better behave myself.

Sue

Hospice

How do you know when it’s time to call in hospice services for someone nearing death? That’s the question we’ve asked ourselves and others for weeks without getting a clear answer; probably because there is no clear, “right” time. It’s not a one-size-fits-all kind of service or decision.

Nevertheless, we did our homework. I attended a presentation by one of three hospice agencies that have contracts to work inside Mom’s nursing center. Then, while Mom was in the hospital for a few days last week, Sis and I interviewed a second hospice representative. Then, after input from the nursing facility staff, we decided to be thorough and meet with the third hospice. We ended up deciding on the third hospice company, not because of any perceived difference in services, but because their representative made the best impression. Emotional times seem to call for gut decisions.

The hospice nurse came to assess Mom and review her chart. Mom seemed to like her but wasn’t entirely enthusiastic about the whole situation. The next day a hospice social worker paid a visit when I wasn’t with Mom. When I asked Mom later about her visits from the nurse and the social worker, she didn’t say much but seemed to have a negative feeling about them.

Then, the following day I arrived at Mom’s room to find a smiley face balloon and smiley face decals on her windows, along with a little framed verse designed to be comforting or inspiring. When I commented on these additions to her room and asked who had brought them, Mom rolled her eyes and said, “Oh, you know.”

Well, I didn’t know, and began guessing all her friends who visit on a regular basis. All these guesses were met with a negative shake of the head. For a minute I wondered if Mom had simply forgotten where they came from. But then it occurred to me – hospice – and Mom is having a hard time even saying the word!

People have told me that there are no right or wrong decisions, that we have to do what we feel deep in our hearts is best for Mom, but I did have a twinge of guilt. When Mom looks at me, I can feel her thinking, “You traitor, you’ve given up on me!”

Sue

The Most Wonderful Day

As my mother's cancer marches on toward the now-inevitable end, the family and friends are surrounding her with as much love as possible without smothering her or making her feel like her last gasp is near. My youngest son, Mom's second grandson, visited this week, along with former neighbors and a continuous stream of friends from the senior community where they live now.

At the end of one day filled with visitors and constant distractions, Mom said, "This has been the most wonderful day!" to which I responded, "Mom, we want every day to be wonderful for you."

On another afternoon this week, Sis and her partner, along with Dad and myself, were stuffed in Mom's little room. Mom said, "It feels so good to have all my family around."

Of course, we can't be there every minute. On two mornings this week, when I went to Mom's room around breakfast time, I found her in tears. "Oh, I thought I'd never see you again," she cried on one occasion. The next time I found her in tears she was frustrated because no one was around to help her eat breakfast. The aide hadn't propped her up enough for her to feed herself and swallow safely. Though she had tried to call for help, she felt like she had been abandoned.

Into this mix of wonderful days and those filled with panic and fear, we have introduced a hospice team to help us provide Mom the comfort she needs. We were concerned that the word "hospice" would set off a panic attack, but Mom has seemed grateful for the extra attention and care. And we are hoping the hospice team will be able to help us prepare Dad for Mom's death and all the changes that will follow.

Sue

M'iTunes

I first became aware of the emotional impact music has on me when that Bobby McFerrin song, “Don’t Worry, Be Happy,” was popular. If I heard it on the radio on my way to work, I’d walk into the office with a bounce in my step, a smile on my face, and the song humming through my head.

Music connects me with times and places. For Mothers’ Day, my son sent me a special CD mix of songs that includes the closest thing we have to a “family theme song” – “New Attitude” from the Beverly Hills Cops soundtrack. That song takes us back to a summer when the boys and I drove from Maryland to Atlanta to visit my folks. While there, Dad recorded the Beverly Hills Cops soundtrack to a cassette for us to listen to on the long drive home. I think it might have saved my sanity and our lives. When the boys got restless and began annoying each other (“Stop touching me….Mom, he’s getting on my side…Mom, he took my…” and so on), I’d put on that song and crank up the volume. I’d warn the boys that if they didn’t get a “new attitude” right quick, Mom would turn into a monster (and they knew what that meant). Sometimes this was accompanied by a bribe – ice cream at the next McDonalds.

The new CD has an eclectic mix of other tunes that are less connected to the past but are quickly taking on meaning in the present. Some are sing-along – “Down to the River to Pray.” Some are dance-along – “If I had a Hammer.” Some are inspiring – “Take my Hand.” Some are just good listening, and I listen over and over in the car and on my iPod. This and other music CDs in my play list are comforting, invigorating, connect me to others, and keep me centered in my faith.

All this makes me wonder how music could enhance Mom’s life at this time. The music channels on her TV are limited. Perhaps it’s time to get a CD player and play some personal and meaningful selections.

Sue

The Family Album

I’m jogging my memory by going through the family album capturing snippets of Mom’s life from a teenager at the beach with her girlfriends, to her wedding announcement, to her role as grandmother.

She was so beautiful; still is when you can look beyond the cancer that has changed the shape of her jaw and neck. I wish I had inherited her legs, which have always been slender and shapely even during the higher points of her weight yo-yo. She has always taken pride in her appearance and is always well dressed and coiffed.

I, on the other hand, have fought the pudge all my life. I can remember Mom taking me shopping for clothes as a teenager and helping me find styles that were as flattering as possible. When I was motivated to try to lose weight, Mom even joined The Diet Center with me and we celebrated each other’s half-pound losses and shared recipes (even tofu salad, which was supposed to look and taste like potato salad, but it didn’t fool me). Mutural encouragement to get fit and stay healthy has been a constant part of our weekly phone conversations over the years.

Pictures of Mom with her grandbabies brought back some of my best memories, as well as one of those traumatic incidents that ultimately increased my love and respect for Mom. It was after I had my first son. Mom, who lived close by, wanted to be helpful and asked over and over what she could do. I foolishly thought I could do everything myself and repeatedly turned down her offers. However, within a week of giving birth, I had a particularly bad day – fussy baby, inflamed and sore nipples, and a feeling of being overwhelmed. How could I possibly take care of baby, laundry, meals, husband, or myself? On top of all this typical post-partum dysfunction, I had promised my husband I’d help him with a little project, which under ordinary circumstances would have been no big deal. But on that particular day, Superwoman’s powers failed her.

I called Mom and begged her to come to my rescue. “What? Hold that precious grandson? I’ll be right over!” And she was. And she did. She walked miles through two small rooms trying to soothe that cranky baby while I finished my project and relaxed enough to produce milk for his dinner.

Sue

Let the celebration begin!

Why must we wait until someone is dead to celebrate their life? I’ve attended so many memorial services that were filled with funny stories and joyful remembrances, and often someone will say, “If only Aunt Ethel could hear these memories of her life…”

Why not let my dear mother in on some of the fun? We learned this week, during a three-day visit to the hospital, that Mom’s cancer is not only back, but it’s spreading aggressively. It’s already putting pressure on her trachea. There are lesions in her lungs. And the tumor seems to want to wrap itself around her carotid artery. Her life is now measured in weeks.

I believe Mom knew bad news was coming. Sis and I were prepared, too. But to uncover that huge elephant and see it plain as day was still a shock. The three of us cried and held each other and just wallowed in our mucky sadness for a little while. Sis and I assured Mom that we would surround her with love and make sure she was never in pain. It didn’t take Mom long to stop crying and ask, “OK, so what’s the plan?”

We’re still exploring our hospice options, the tangled web of Medicare, and other logistical questions, but we’re committed to making sure that Mom’s last weeks and days are filled with love and as many laughs as we can muster.

I’ve invited friends and family to write notes with some wonderful or funny memories about an experience with Mom. Why wait for the memorial service? That, of course, made me start thinking of my own stories. It’s not easy. Maybe it’s my own aging brain, but the experiences over the years are blurred into one big, happy mess and I’m having trouble pulling out incidents, much less the details, that made them special or funny.

But, that’s my job for the next… however long. At least one story a day.

Sue

"I won't sign"

Just because my 84-year-old father with Parkinson’s Disease, dementia, and paranoia won’t sign the papers making me and my sister his agents for healthcare and financial affairs, does that mean he has completely lost it? Is there some edge of reason in that degenerated brain of his where his doubts can be addressed, where he can be reassured and then make the right decision?

Or has the time come to let the court decide that he is incompetent to handle his affairs and needs a guardian? I don’t want to take that route if I can possibly avoid it. How can I appear to be his adversary one minute (if that’s how he views it), taking control that he fears giving up, and the next minute change his clothes and tuck him into bed with a good night kiss?

I sit across the table from him as he stares at the same page of the document for an hour. He seems to want to say something and I wait. As I watch him I pray, “God, please give him clarity, understanding, and the ability to communicate his thoughts and concerns for at least a little longer…”

It’s not working, God. I don’t know what your plan is, but it’s apparently not on my timetable. I’m feeling frustrated and angry. God, please give me an extra measure of patience and compassion this week.

Sue

Processing Loss

A divorce mediator once told me that the person filing for separation or divorce has most likely put a lot of time and thought into that action before taking it. He or she has already grieved the loss of relationship, while the other spouse does not begin the grieving process until the intent to separate is announced. The grieving may seem unequal, and indeed one may hurt more than the other, but it’s partly a question of timing.

So it seems with processing other types of loss. All these past three months, our family has been grieving Mom’s loss of vitality, independence, and cognitive function. And while we have hoped for the best outcome, I think we’ve already been grieving her inevitable death, whenever and however that may occur.

Thus, when Sis and I accompanied Mom to the doctor yesterday and heard the bad news that the cancer has returned, that Mom is not a good candidate for more surgery and might not be fit enough for radiation and chemo even if she wanted to choose those options, I think we were prepared for that truth.

I’m not sure about Mom’s processing. In recent weeks she’s said things like, “Well, the fun is over….This is the beginning of the end….I guess I’ll never be back here again (referring to her apartment)…” But after our appointment yesterday, she was visibly affected. It showed first as exhaustion, not surprising given the 90-degree weather and the long trip to the doctor’s office and back. Then, later, it registered as frustration and anger with the occupational therapist who was trying to engage her to exercise small motor and thinking skills with kids’ toys. And, by dinnertime, Mom could not, or would not, sit up straight in her wheelchair. Seeing her slumped over, not saying much, was heartbreaking.

I felt like she needed to process her feelings before talking about them, so I did not press her to talk about it. But going forward, I hope she will talk about her fears, desires, and yet-to-be-fulfilled dreams. Are there things she’d like to do and see while she is still able? How can we help her approach what lies ahead – whether it's more treatment or palliative care – with a sense of calm and completion?

We have another doctor to see – a medical oncologist – and then we may be ready to engage with hospice services.

Sue

Bathroom Epiphany

I woke one morning this week remembering that (once again) I had fallen asleep mid-prayer and, though I believe God knows what’s on my mind even after I fall asleep, I felt compelled to try to finish what I'd started.

As I prayed for Mom, I realized I was confused and conflicted about what to pray for. On the one hand, I want to help her hold hope for as complete a recovery as possible. In my mind, that would look like remission of the cancer, her ability to live as independently as possible, and to enjoy friends and many of her favorite activities, such as chewing real food, going out to lunch, and shopping.

On the other hand, I fear the lumps on her neck signal the return of the cancer, and I pray that she will not have to endure more surgery, the potential for pneumonia and other complications, a long hospital stay, and a repetition of all the physical and occupational therapies. A part of me wants to ask God to take his child as quickly and painlessly as possible.

A prayer for recovery and a prayer for release seemed diametrically opposed. It struck me as two different kinds of energy – the buoyancy of hope and the passivity of giving up. And, once again, I thought about the kind of energy I would want surrounding me if I were in Mom’s shoes. Hopeful, healing energy, please!

However, feeling my own energy draining, my hope for Mom’s recovery sagging, I wondered how I could possibly support her.

Later, in the bathroom – the room that so often inspires creative thinking – as I brushed my teeth, it came to me. Where is my faith if I can’t see the energy and hope and joy in life eternal? As my pastor said, as he preached on the joyous vision in Revelations, “what’s so bad about the end of the world?”

“Wait a minute,” I argue with myself, as my electric toothbrush buzzes over my teeth, “am I just rationalizing my apparent lack of faith and hope for her recovery?”

“Perhaps,” I respond. “But that’s the way we humans are created,” I tell myself. We are hard-wired to try to understand and explain the mysteries of our existence. We are created with the capacity to feel emotion and to want to feel joy. And, no doubt, there’s a certain amount of cultural conditioning going on here, too.

Finding the energy to surround Mom with hope – for whatever comes next – is a matter of resetting my own “faithometer.” It won’t be easy, but with God’s help all things are possible.

Sue

Losing Words

Just about everyone I know has what we all laughingly refer to as “senior moments." It’s a handy excuse for forgetfulness. But after three months of daily living with two people whose senior moments are legitimate and frequent, I am downright scared at my own lapses. Could it be I’m in the early stages of Parkinsons?

Last night, for example, we were out for a stroll around the pond and we noticed plugs of dirt in the grass. I could not for the life of me remember the name for that process – which is performed on my own yard every year – in which a machine takes out plugs of dirt so that the lawn can absorb more moisture and nutrients. Mom couldn’t remember the word either but after all she’s been through, I wouldn’t expect it.

Finally, after about three or four minutes it came to me – aeration – but by then I was ready to make an appointment with the neurologist.

I take comfort in the recent news that there are new medications and vaccines for Alzheimers on the horizon. I pray that my mental decline does not outpace FDA approval.

Meanwhile, I picked up a new book of Sudoku puzzles. I’ve never been fond of numbers, but I can handle 1-to-9. Does the fact that I can’t seem to get past the “easy” puzzles mean that I’ve waited too long to begin exercising my brain? If it’s words I’m forgetting, should I be doing word-memory exercises instead? Or, should I invest in one of those new brain fitness software programs?

I’ll bet it’s not compatible with my Mac.

Sue

Father's Day

How do I want to remember my father? That’s a question I’ve asked myself this week as I shopped for a not-too-sappy Father’s Day card. The card I finally selected refers to memories of good times with dear old dad.

That got me thinking about these and other memories – dunking doughnuts in Dad’s steaming black coffee when I was about three years old; going fishing and having picnics when I was five; trips to the ocean for summer vacations; playing poker for pennies (when I dealt, nearly everything was wild); intense political debates; having lunch with Dad near his office in bars where everyone knew his name.

I pray that those are the memories I will recall until and when I have very little memory left. Eventually, I want to forget most of these last few months as this dear man I’m caring for seldom resembles that other man. I want to forget the frustration and sadness of his physical and mental decline and remember the father who was my favorite dance partner.

Sue

Decisions, decisions

Note to caregivers: Don’t necessarily expect your elders to be able to make their own life and death decisions.

On Monday, I took Mom to meet with a radiation oncologist to explore the pros and cons of radiation treatments for someone of her age and condition. First, we met with a nurse practitioner who answered most of our questions. She left the most difficult question to the doctor – Given what you know about the pathology of her cancer, what is her prognosis with and without the radiation? The answer: “Without radiation there’s about a 50-50 chance the cancer will come back. With the radiation, the chance of it coming back is about half that.”

We also talked about side effects – damage (possibly permanent) to the salivary glands and taste buds, sore throat, skin irritation, and the exhausting trips to the hospital five days a week for six or seven weeks.

I wasn’t sure how much of this Mom was absorbing. We had brainstormed the questions in advance, but in the moment, she seemed too overwhelmed to comprehend. On the way home, I said, “Mom, you don’t have to decide right now; we need to talk a couple more people before we have enough information. But what do you think is the most important thing you heard today?”

“That doctor really didn’t say much,” she said.

“What about the nurse; what was the most important thing you heard from her?”

“Oh, she was very smart; she knew what she was talking about,” Mom said.

Later in the afternoon, I took Dad over to Mom’s room and with the two of them together told Dad what the doctor said. I thought by hearing it again, it would sink in a little more for Mom.

I don’t want to overwhelm her. I don’t want to depress her with cold, hard facts of her situation. But neither do I want to make this decision for her if I can help it. However, later, I told Sis on the phone that I’m afraid she and I will have to make all the important decisions – radiation, living arrangements, finances, etc. – and carefully present them in a way that helps Mom and Dad feel like full participants but also feel secure in the guidance and support they have from us.

The most important thing I heard at that appointment was the last thing the nurse said as we were leaving, “Whatever decision you make will the right one.”

Sue

Sing to the Lord!

Glory be! We finally made it to church! Somehow on Sunday the stars were aligned in such a way that Poppa was clean, dressed, and ready in time for the 3:00 p.m. community church service. We picked up Momma from the nursing center and formed our parade of wheelchair and walker through the building and up the elevator to the community hall where a local Baptist church was presenting the music and message.

We actually arrived early enough to hear the choir practice their songs. My father eagerly held a hymnal and awaited the announcement of page numbers so that he could sing along. As I listened to the choir, I could hear Poppa humming along in perfect harmony!

Now, my cousin and I had just the day before talked about how much we enjoy singing and how we wish we’d been blessed with an ear for harmony. We each struggle to hear, learn, and sing the second soprano or alto parts. And here was my 84-year-old father doing what for him comes naturally. Must have inherited it from his mother who could hear a tune and immediately play it on the piano.

Though Dad was prepared to accompany the choir, I explained that they would sing some songs by themselves and then we would be given a page number from the hymnal. Finally, it was our turn – page 13 – “Come Thou Fount of Every Blessing.” Everyone stood up and opened their hymnals. Mom and Dad struggled to stand, the hymnals dangerously impeding their ability to do so safely. I quickly took hymnals from both of them, pulled them to standing, found their page numbers, handed the hymnals back, and by that time, the hymn was almost over.

Darn! Why didn’t I think to tell them to just stay seated? Oh well, I thought, we’ll be better prepared for the next hymn. The pastor was easy to listen to and gave a good, brief message, then a prayer. Now, I thought, another song… But no, the music director had left early and I guess the pastor felt inadequate to lead a bunch of octogenarians in song (Doesn’t he know the Holy Spirit would have helped him?), so he blessed us and sent us home.

Even Mom said, “I was hoping for more music.” And I wished I could have heard more joyful harmony from Dad.

Sue

Two toddlers and a wheelchair

More than once during this elder care adventure I’ve been reminded of my childcaring years. There’s not a whole lot of difference on some days.

Yesterday, I asked Mom if she wanted to spend the day in her apartment rather than next door in her room at the skilled nursing facility. She gladly accepted the invitation. So we formed a parade – Mom in her wheelchair with me pushing, followed by Dad and his walker. Through lots of practice, we’ve learned how to get the parade through doors and into elevators.

Once in the apartment, Mom and Dad both took naps and I took a break (Remember how wonderful it was when both kids took naps at the same time?). Then, Mom wanted to get up and explore. Thanks to all the physical therapy she’s had over the past few weeks, she can balance and walk without help. Her stamina isn’t great, however, and I worry that she will simply wear out and crumble to the floor. So, like a nervous mother, I follow my little toddler everywhere.

Mom is still on a puree diet because she has not yet learned to align her remaining teeth to chew her food. Yet, she is tempted by all sorts of crunchy foods. As she stands at the pantry door, pulling down boxes of crackers and cookies, I’m right behind her, “Now, Mom, you know you can’t chew that…” (again reminiscent of my kids getting into things forbidden).

Meanwhile, Dad is shuffling around trying not to stumble over the wheelchair and walker that take up most of the free space in the tiny apartment. He needs to use the bathroom and I must leave the other toddler unattended to help him. When I return to the living room, I find Mom stuffing chocolate candy in her mouth. Seeing me, she quickly hides a piece in her fist where it melts into a gooey mess.

I guess this is the predictable cycle – children, then parents acting like children, and then grandchildren – ensuring you never lose your skills for hovering, guarding, warning, and then cleaning up messes.

Sue

The Gold Cross

Yesterday, Mom asked me to find her gold cross necklace that I gave her for Christmas. “It’s hidden with your other jewelry,” I told her. “But I’ll get it and you can wear it if you think you can leave it on at all times. Do you think you can leave it on even when you sleep or shower,” I asked. “Yes,” she promised. “It’s very important to me.”

A little later Mom asked me if there’s anything she should be doing to prepare for “what’s coming next.” That opened the conversation about radiation treatments and the questions we want to ask the oncologist next week. I was glad Mom wanted to talk about it, and she seemed very clear-headed and calm.

Then, I asked, “Momma, do you say your prayers at night?”

“Oh, yes,” she said, “and in the morning and at noon, too.”

I said, “Well, I’m praying that God will guide you to made the decision that’s best for you once we have all the information we can get.”

“Yes, that’s what I’m praying for, too,” she said.

The day before I had prayed for a clue to how to talk about prayer with my mother. Here was the answer. Thank you, God.

Sue

Tough Talks

As Mom gets stronger following her cancer surgery, and as the window of opportunity for starting radiation treatments closes, it’s time talk openly and honestly and to make tough decisions. What would the radiation do to her quality of life? How much would it help? Would she be buying only a little bit of time at the cost of great misery? What if Mom chooses not to have radiation? What is her prognosis? Will she be able to live at home again, or in assisted living, or will she have to spend the rest of her days in a nursing facility?

Even though Mom still seems confused at times about where she is, the depression/anxiety meds are keeping her level and calm. She will occasionally say something like, “Looks like I’m going to be here for a long time.” I probe, “What do you mean, Mom?” But she doesn’t continue the conversation, and I stop probing.

Next week Mom will have an appointment with a radiation oncologist to get the answers to these and other questions and to begin the process of radiation. This doctor will no doubt promote radiation as the appropriate course of treatment; that’s his job. But I want Mom to see that there’s another choice – the do nothing choice – and to understand the consequences for each choice.

I thought a more neutral doctor might be able to help, so I took Mom (with Dad tagging along) to see her primary care doctor. He more or less followed the script in my head: “You could choose radiation, but that’s not a cure…it’s only palliative. It may shrink any remaining cancer that’s there but won’t cure it. It may make you feel tired, but I’ve had no experience with that type of cancer and can’t tell you all the side effects. Or, you can choose to do nothing, in which case, I would probably recommend that you explore the benefits of working with a hospice organization, for which Medicare will cover the cost…”

Mom expressed some dismay over what the doctor said, to which he asked, “What did you want me to say?” Mom quickly replied, “No, I want you to tell me the truth.”

The doctor promised to visit her next week following her radiation oncology appointment to further explore her options and decisions. I like this doctor and believe he will be a comfort and help no matter what Mom chooses.

My job is to be ready to listen when Mom wants to talk; to help her find answers to questions; to help her get past her fear; to help her feel loved and cared for. I’m also one who prays (which is not to say others aren’t praying, too). I think about praying with her, as well as for her. But since we are not in the habit of praying together, I worry that she will think I’m trying to deliver some sort of final rite; would it comfort or scare her to death? Lord, give me a clue.

Sue

My Art Fix

I’m so fortunate that my little respite trip could include the Western Federation of Watercolor Societies annual show and conference. I’m sitting in a magnificent art gallery surrounded by the best water media paintings from the western states, and I can feel the inspiration seeping into my being.

Furthermore, I’m loving the opportunity to connect with my artist friends from home as well as to meet new friends from the art world. I marvel at the talent and hard work represented on these walls. But right now, given my preoccupation the past few months, I’m feeling envy – for the fun that went into the creation of these wonderful paintings.

I’ve thought about challenging myself to paint one small painting each day. All it would take is a bit of planning and organizing my materials and space so that I could set up and clean up quickly. But, I have so far rejected that idea in favor of writing. I perceive that I would have to trade blogging for art; not enough time/energy to do both.

Perhaps a compromise is in order. Since I write approximately every other day, maybe I can paint on the in-between days. And, if I can find a scanner, you blog readers may see the results. Stay tuned.

Sue

No rest for the respite

Though it's nice to have a change of pace from eldercare responsibilities, being home for four short days is no picnic. I've been in the garden pulling weeds each morning by 7:00. I had the air conditioners serviced, bought more paper products, cat litter, and cat food, and moved my winter clothes to storage. By the end of the day, I'm beat.

But in between those necessary tasks, I've lunched and dined with friends, talked with others by phone, and caught up, somewhat, with the joys and concerns of the neighborhood. Yes, it's wonderful to be home.

Today I had a much needed massage to work out the knots of tension in my head as well as my body. I feel like a new person.

I thank God for the opportunity to refresh and renew my energy for the challenges ahead.

Sue

Letting Go

I could have worried Dad to death with instructions and details before I left him at the skilled nursing center yesterday. "Now, if you're going to need help in the bathroom, ring the call bell before you go in there and get undressed..." But, knowing that he is easily confused and worried, I left most of those details for him and the nursing staff to figure out themselves. I'm sure there will be some tense moments.

So, I'm at the airport. They are loading the plane. I reach for my cell phone to turn it off and discover I've had a call from the nursing center. Do I pretend I didn't see it and get on the plane (the "ignorance is bliss" choice)? Or, do I call and risk hearing "your father (or mother) has taken a fall...rushed to the ER...etc." (the "my trip is f****d..." choice)?

I called. It seems the nursing staff was confused because they forgot I gave them all of Dad's pills to send to the pharmacy to be bubble-wrapped so that they can dispense them. My voice, raised several octaves and decibles, scared even me, and I'm sure alarmed those around me and, God bless her, the head nurse on the other end of the phone line. All she needed was the reminder to find the pills. All was well. I boarded the plane, and in a few hours was reunited with good friends in Las Vegas, sitting poolside with a glass of wine.

However, this morning, I faced the same struggle - Do I call to see how Mom and Dad made out last night and try to troubleshoot any problems that might have occurred? Or do I let go and let God take care of his octogenarian children? For now, I'm choosing the latter.

Sue

Respite Planning - the Final Countdown

Two and a half more days until I fly like a bird away from my cage to nine days of the life I call “normal.” Normal, as in singing with my choir, seeing good friends, sleeping in my own bed sandwiched between two cats, and catching up on some gardening.

I told Mom today about the plan for me to take a break and for Dad to stay in the nursing center with her for a week. She took it very well, expressed no concerns or anxiety. Man, those must be great meds they’re giving her!

I also signed all the paperwork for Dad’s stay and found out that he will get the room right next to Mom’s. I sure hope this works out and that they don’t drive each other and everyone else crazy. I typed up a three-page list of “tips” for the nursing staff about what aspects of daily living Dad can do for himself and what things he needs/expects assistance with. The Director of Nursing was most impressed – “I’ve never had any family member give us such a thoughtful and thorough description of a patient’s needs,” she said.

I’ve always been detail oriented. Strategies, plans, logistics are my forte. OK, so I’m a control freak. One of the things that scares me to death is the way an illness, such as Parkinsons, can take a strength and twist it into a obsession that no longer helps, but hampers, one’s ability to function in a way others would consider normal and reasonable.

Take my father, for example. He prides himself on his ability to keep himself clean and looking nice. Nothing wrong with that. But the Parkinsons Disease has turned the fairly simple activity of showering into a 90-minute loop of soaping, rinsing, re-soaping, re-rinsing, while the caregiver stands guard to catch him or pick him up if he falls.

Now, what will my obsession with planning look like in 25 years? Lists, long lists of meaningless things that I think I must do but can no longer do. Note to caregiver: Just give me a flipchart and some markers and let me make my lists.

Sue

No Fireworks

This morning after breakfast I finally found the courage and the words to talk to Dad about plans for my respite trip, which starts next Friday. I had run through all the worst-case scenarios in my mind – Dad curses at me; Dad becomes silent, hostile, and depressed; Dad flat out refuses to budge from his apartment. As usual, my fears were unfounded and a total waste of emotional energy.

Well, maybe not a total waste. It’s always useful to prepare for the worst and hope for the best. Though I had even considered waiting until the very last minute to reveal the plans, I just couldn’t treat him the way I know I would not want to be treated myself. Give him some time to get used to the idea; give him time to ask questions and feel secure that he will have all the support he needs, my conscience told me.

With a Parkinsons patient suffering from dementia, you don’t know what to expect, and you can’t necessarily expect them to think or act logically. This is something I rediscover almost every day. Though I had talked about my trip many times, I was surprised that Dad had completely forgotten about it. But I did anticipate that he would respond better to a visual plan. So I got out a month-at-a-glance calendar and made notes on the days I would be gone, the days he would spend at the nursing facility with Mom, the days he would have assistance from the home health aid, the day Sis will pick him up to spend time at her place, and the day I will return. He stared at the calendar for about 45 minutes, sometimes dozing off. Each time I asked if he had any questions, he would return to the first marked day and read the notes aloud, then he’d stare and doze some more.

Now, my challenge is to tell Mom about my trip. I worry that when she learns Dad will be staying “with” her (down the hall), she’ll think she’ll have to take care of him and will worry that she can’t. I worry that she will become further depressed and will fear I’m abandoning her. I’ll wait to tell her when Sis is here with me. Her presence will reinforce the fact that Sis will be available to visit and to help as needed.

I hope that I can keep Mom’s and Dad’s concerns, if they have any, on a higher level rather than in the nitty-gritty details. My job is to make sure the nursing facility has Dad’s medications, knows his daily habits and needs, and is prepared to make his stay a positive experience. He may end up there long-term eventually. I pray he may even look forward to it.

Sue

The Croc's Clock

Most nights I am reminded about 4 a.m. of Captain Hook’s dreaded tick-tock warning of the approaching crocodile. In my case, it’s the loudest clock ever invented, which happens to reside on the bedside table not far from my pillow. Such a loud TICK-TOCK for such a tiny portable clock.

During the day I don’t notice it; thus, I never remember to move the clock before I go to bed. But after something else awakens me – my bladder, a cough from my father, or whatever – the tick-tock is there to make further sleep nearly impossible. The sound promotes thinking; not the productive, creative sort of thinking I might enjoy even at 4 a.m., but the more worrisome kind of thinking – how will I announce my little vacation to Mom, and how will I tell Dad he’s going to spend his little vacation (from me) in skilled nursing with Mom?

Some nights I pray about whatever is on my mind. Other nights I pray that God will simply put me back to sleep quickly; never mind solving the problems.

These unresolved issues are like crocodiles chasing me through the swamp of my fear, indecision, insecurity. How much better I would sleep if I put troubling issues to bed early and the clock on the other side of the room.

Sue

Respite Planning

The respite I’ve been planning for these past couple of months is finally getting close. I’m taking about 10 days off to sing in a concert, weed my flowers at home, get my teeth cleaned, snuggle with my kitties (if they’re still speaking to me), visit with friends, and attend a regional art show. Sis and her partner agreed to watch over Mom and Dad while I’m gone.

Now comes the hard part – telling Mom and Dad. Dad already knows, but has probably forgotten. I’ve certainly talked about it openly in front of him many times. But here’s what he doesn’t know: I’ve arranged for him to spend part of the time in the skilled nursing facility with Mom. He gets 90 complimentary days as part of his living arrangements in this continuous care community where they reside. He’ll be well cared for and can help watch over Mom. I’ll continue his home health aid for three days that week; she can take him back to the apartment, to pick up the mail, or anywhere else he wants/needs to go. Sounds like a sweet deal to me.

But will he buy it? First, I anticipate he will feel he’s being stuck away with old, sick people because we think he’s old and sick. This week when I suggested we might have dinner in the assisting living dining room instead of the “independent” dining room where he normally eats, he seemed to get angry. Though he never actually completed the question, I think he was trying to ask me if anyone had complained about him eating there. Yet, I think/hope he will feel comfortable in the assisted living area because this is where he and Mom will belong pretty soon.

Second, I anticipate he will be confused and concerned about what exactly will happen while I’m gone. I’ve learned that he likes calendars and lists. So today I will buy him a large format calendar on which I can list in some detail what will happen each day. He can post it, along with my phone number. Also, Sis and her partner will come over after work during the week to visit both Mom and Dad and, on the weekend, they’ll take Dad out to their place.

When I return, I’ll be able to meet with the assisted living team to discuss their assessment of Dad and what level of care they feel he would need if/when Mom and Dad move in there.

I’m a bit less worried about Mom’s reaction to this plan. She may be apprehensive at first. But she receives so much support from the nursing staff that I think she won’t miss me too much.

The logistics are falling into place. If the emotional pieces of the puzzle come together in the next few days, I’ll be very happy.

Sue

Why this, Lord?

Imagine for a moment that all the skills for which you have been most respected throughout all of your career are suddenly gone. Imagine that you were an effective and persuasive speaker and you can no longer put a coherent sentence together. Imagine that you had a commanding voice, and you can no longer speak above a whisper. Imagine that you were blessed with logical thinking and analytical ability, but you now struggle to understand the sentiment behind a Mother’s Day card.

Why would God let this happen to someone? Why, of all things, would it afflict my father, who had a successful and respected career as a labor relations executive? He survived lung cancer for this? He drove a car until he was 82 and never had an accident – for this?

I used to have a recurring nightmare with only minor variations. The bad guys were after me; they almost had me in their clutches; and no sound would come out of my mouth. I wanted to scream, or, in some variations, I wanted to try to reason with them, but fear had stolen my voice. A “high intuitive” person once told me that this dream was about losing a most highly developed and valued ability.

I wonder if my father ever had dreams like that. I wonder if I, too, will be stripped of my ability to think creatively, to reason, to speak. I know my body will deteriorate, but please, God, let my mind and my voice be the last things to go.

Sue

PS - I won't keep you in suspense...yes, Dad signed the Mother's Day card...after two more hours of study and struggle.

Mother's Day

My husband has always insisted that Mother’s or Father’s Day and Valentines Day were simply creations of the greeting card industry and therefore meaningless. The sentiments expressed to loved ones could and should be expressed on any, or every, other day of the year. I don’t disagree. You can forget me on Mother’s Day, but don’t you dare forget my birthday!

However, of all the Mother’s Days I’ve experienced, this one will probably be among the most memorable because my mother is alive to celebrate it. Her trip to hell and back these last couple of months is not over; she still faces radiation treatments for her cancer. But this is a very pleasant rest stop along the highway and we’re going to make the most of it.

Mom is in the skilled nursing facility in the next building from where Dad and I are living. When Sis and her partner come over later today, we’re going to kidnap Mom and bring her over here for ham, potato salad, asparagus, brownies, and ice cream (all pureed for Mom because she can’t chew yet). We’ll even let her have a little glass of wine.

This is her day. Queen for the Day. The royal treatment will include a manicure, flowers, cards, and a bottle of her favorite perfume.

Dad will want to play along. We got him a “to my wife” Mother’s Day card to sign for her. But after reading it over and over again for more than an hour last night, he still wouldn’t sign it; it seems he didn’t understand the sentiment in the card. I thought it was perfect: I love you because you make me smile even where there are all kinds of reasons not to; I love you because you make me feel like I can do anything; I love you because you know me better than anyone, yet you still love me.

I couldn’t have written a better letter from him to my mother! I finally put the card away and told him he can read it again and sign it this morning. His Parkinsons causes him to "sundown" physically and mentally; anything requiring a signature (even a greeting card) should be presented early int he day.

Will Mom get a card from her husband on Mother’s Day? (insert a little suspenseful organ music) Stay tuned for the next episode.

Sue

As I am, Lord, wrinkles and all

This morning as I prepare to have my picture taken for our church directory, I stare into the mirror at all the extra “baggage” under my eyes. I may have aged 10 years in the two and a half months I’ve been caring for my parents.

Perhaps I just slept on my face wrong, I think hopefully. Or maybe it’s the humidity that causes my skin to puff and sag like a limp water balloon. Will it go away when I return to arid Utah? Or have the caring, crying, laughing, and vexations of these past months been written indelibly on my face?

Then I ponder the alternatives. I’m not the type to sit in a protective penthouse, high above the cares and needs of others. Nor am I the type to pull and stretch my aging skin, or inject it with toxins until I hardly recognize my image in the mirror. And I’d much rather collect facial baggage than hop aboard the next flight to eternity.

No, I’ll wear my new wrinkles with pride. With that said, I hope Olin Mills has a good airbrush.

Sue

Take one small dose of reality

Though Mother is still confused, she continues to get stronger and stronger every day. Thanks to an appetite stimulant, she is eating enough calories to negate the need for another feeding tube. And with a new antidepressant, we’re hopeful she will not worry so much about things real or imagined.

Wild animals attacked her one night. Last night she dropped the telephone and worried that she would not be able to get a new one for Dad. She imagines and worries that something is missing from her teeth – a key? A button? And although she has a catheter discretely removing waste from her body, she worries about the lack of privacy when she feels the urge to go.

Now here’s my dilemma: Now that she is about to be released from the rehab hospital to go to another skilled nursing facility, one step closer to home, I imagine she may be worried about not being able to do all the things she used to do – from household accounting to caring for Dad. I could tell her she’ll never have to (be able to) do those things again; Sis and I will handle everything, including eventually putting her and/or Dad into assisted living. But that might worry her even more – BIG CHANGE! So, I am trying to dispense one small dose of reality at a time, all the while cheerleading and reassuring. If she asks me a specific question about the future, I give her a truthful answer, but I don’t offer more than seems necessary. I hope I’m doing the right thing.

Sue

Hospital Psychosis

I’ve been worried about my mother’s apparent confusion and hallucinations since she’s been in the hospital. I’ve wondered if she would ever again have the cognitive ability, let alone physical strength, to live independently. Then, my sister-in-law told me about hospital psychosis.

Some people, particularly the elderly, are susceptible to this kind of confusion brought on by the unreality of being in a hospital setting. My sister-in-law reminded me that her father, while hospitalized, had been quite certain of a plot to poison him. Later, after he was home, he came to his senses, recalled what he had said (accusingly), and apologized.

Yesterday, on our visit to the hospital, we found Mom groaning and moaning, though when I asked if she was in pain, she said no. Meanwhile, her “roommate” on the other side of the blue curtain, was moaning even louder, complaining of stomach cramps and feeling sick. Shortly after we left, my sister arrived at the hospital to find Mom moaning loudly, crying, and complaining of stomach cramps.

Though Mom did, apparently, have a digestive disturbance (will spare the details), I must wonder whether these two women should be roommates. Are they feeding each other’s psychoses? Have they contracted the same virus or bacteria? Should we protect ourselves by staying away from the hospital and potential airborne pathogens?

Now, who’s psychotic?

Sue

Blue Heron

How exciting to be able to sit on your own sun porch and spot a Blue Heron at the edge of the pond below. As I watch the elegant bird stretch his neck, then dip his bill into the water, I think about all we miss in our middle years. From ages 6 to about 65, who has time to just sit and stare at a pond?

Even when we vacation, how easy it is to get caught up in a whirlwind of sightseeing, shopping, and other activities. Go, go, go is a choice we make without thinking about it most of the time. It feels awkward to stop, sit, stare at a pond. I feel guilty when I’m not tackling the next thing on my to-do list.

Though I don’t look forward to a loss of mobility (or my mind), there’s something to be said for aging in a place where you can stare at a pond and watch for the birds, ducks, turtles, and fish that perform for you all day long.

Sue

Sandwiched In

A lot has been said about Boomers sandwiched between childcare and eldercare. I was feeling fortunate, perhaps a little smug, that my childcare years are over and I can give full attention to the elders’ needs.

However, as some wise women have reminded me, “You’re always a mother.” Today, I’m feeling like a peanut butter and mashed banana sandwich (not very pretty, but hey, I’m in the South).

Though I know I’m doing the right thing to be here for my parents, especially for Mom’s unanticipated extended stay in the hospital, my heart aches to miss my youngest son’s graduation from college. The trip was planned for months, and I was just about to click on “purchase” to buy the plane tickets when Mom was diagnosed with cancer. I still held out hope that the eldercare situation would be under control and I could find a last-minute cheap seat to Paris, no less, but it ain’t going to happen.

I console myself (and my son) with the rational thought that there will be many more opportunities for us to do fun things together – even travel to Paris – and belated celebrations can be just as fun. My parents, on the other hand, could be gone within the year.

But I’m not feeling too rational right now. In fact, I’m having my own little pitty party, a soggy sandwich that tastes like tears.

Sue

That Sneaky Old Reality

It’s so easy to live in your own little world of hopes, dreams, expectations. Then, suddenly, Reality sneaks up behind, puts hands over your eyes, and says, “Guess who,” just like that game we played as kids. When you open your eyes, there’s Reality staring you in the face.

That’s the way I felt yesterday as I left the hospital with Dad and Sis after a visit with Mom. The Reality staring me in the face is that Mom – even if she survives this bout of acute lung problems and the upcoming radiation treatments for cancer – will never be the same.

In some ways it was a fun, uplifting visit. Mom was awake, alert, and funny. It was as though she had spent all day working on her stand-up comedy routine. She had a one-line comeback for everything we said, and even Dad was laughing. It started with her sitting there with the hospital telephone in her lap. When we walked in the door, she said, “Where have you been? I’ve been trying to call you all day!”

“Who were you trying to call, Mom? What number?”

“Well, I don’t have any of your numbers. I could hear someone talking, but they couldn’t hear me!”

We wrote down all our cell phone numbers on a pad of paper, and told her not to call in the middle of the night. We joked that we’d have the nurses remove the speaking valve from her trach tube if she didn’t behave.

Her pent-up conversation took a number of wild curves as she told us about something she’d overheard about hospital paper procurements (new paper not as good as the old paper); her worry about George Bush leading the country (what’s going to happen to us, she wondered); and her determination not to have a new Olin Mills portrait taken for her community directory (apparently confusing something I had said about my new church directory). There was an edge of paranoia and dementia in these ramblings, which may be due to long days with nothing but the TV and an occasional busy nurse for company. But Sis and I later shared our realization that Mom and Dad will have to go to assisted living – not just short term while Mom recovers – but forever. Of course, this was always a possibility that we acknowledged, and we had been researching various facilities. But deep down, I think we both thought/hoped that Mom would be able to live independently again.

Dad and I spent the weekend at Sis’s. After a fabulous dinner, I was in desperate need of a brisk walk to aid digestion and burn at least a few of the calories. Dad stayed with Sis’s partner, and Sis went walking with me. We returned to a paranoid Papa, who couldn’t be persuaded to go to bed until after midnight. He thought I was leaving. He heard noises in the house. He felt the need to hide his wallet. That was all he managed to articulate; only God knows what else was on his mind.

Was it Mom’s confusion that set him off? Was it the change in environment – staying a Sis’s house (even though he’s done that many times before)? Was it anything else we said in his presence (though we try to avoid talking about the future to spare him anxiety)? What kinds of strange imaginings will the two of them cook up when Mom and Dad are back together again?

Sue