Saturday, December 17, 2011

Some Things You Don't Forget... (July 2011)

My Mom's become more and more unresponsive lately. She sleeps a lot and when she's awake, she gazes off into space. When I call her name to gain her attention, she searches the air around her as if blind, unable to find me from even a foot away. I usually take her face in my hands and keep moving myself into her eye sight until she can focus on me. When she does there is recognition and she usually expresses a "there you are" surprise, like I've appeared out of thin air.
Decent conversations are all but non-existent now too. She'll answer questions like "how are you," or "how was your day." I might receive an "I'm doing well," or "it was nice," or she might start babbling gibberish.
And then, once in a while, poof! An amazing blast of clarity. Tonight was one of those instances. We chit chatted the entire time I fed her dinner. When she finished, I stood from the table.
"Whew," My Mom said with a whistle. I thought she would follow it up with a "Man, am I full." As always, skinny Winny had cleaned her plate. Instead she was sizing me up. "You're gaining weight kid," she said patting her stomach. I took a few steps back and looked down at my white shorts. I had just returned from vacation where I had indeed picked up a few pounds. She doesn't consider the comment critical. It's just a fact.
"Well, your legs don't look too bad," she said taking in the full picture.
I fessed up that I needed to shape up a bit, then told my vain Mom she was lucky that she was skinny.
"Are you kidding?" she blurts. "Look at this," she says grabbing at the side of each thigh. "Look at this." The woman weighs a mere 80 pounds. There was nothing to grab except loose skin. She doesn't know where she lives, what year it is, or what she just ate for dinner five minutes ago, but she knows popular opinion says you're supposed to be thin. I think back to my college days of trying to lose weight and how she'd revel in telling me about the diets from her day. I tried her favorite, the green bean diet. I think another time she had me try the grapefruit diet.
"No Mom," I stifled a laugh. "I assure you, you're skinny."
"Well, thank God," she says emphatically, letting out a sigh of relief.

I stop and think about recent outrage over certain magazines airbrushing photos of models to make them look even skinnier than they already are. I think of the very legitimate concern over today's young girls being too wrapped up over body image. I look at My Mom patting her own stomach now, ensuring she's still looking good at 90. I think of generations before her using wooden stays, corsets and girdles to tighten their tummies. The battle of the bulge is nothing new.

Thursday, December 15, 2011

Winifred O'Neill Curran October 26, 1921 - November 25, 2011

My Mom passed away super peacefully the day after Thanksgiving. We were beyond fortunate that she did not suffer from the scenarios that often inflict Alzheimer’s patients in their final days. For instance, she ate and drank right up until she began to slip away. No feeding tubes or any other ghastly measures. While she never appeared to suffer, the whole ordeal was pure torment for me. Mostly because I feel like I failed her as a caregiver in those final days. I promise I’m not being too hard on myself. It’s just that death and dying doesn’t come with a manual and now that I have some experience, I’d like a do-over. I’m positive I would be a little more tender, a little more gentle and a lot more patient with the process.
When I say no one really teaches you how to help someone die, it’s a little bit of a lie. The truth is our small Catholic high school offered a class called “Death and Dying.” I took it freshman year. We read the famous book written by Elisabeth K├╝bler-Ross and are you ready for this? The teacher, sweet Janet Roberge, succumbed to cancer the very term I had the class. How’s that for a life lesson?
But that was 30 years ago. Because of the pure shock value of attending the teacher’s funeral, I’ll never forget the class, but I had yet to gain any solid first-hand experience on the topic.

My Mom’s main caregiver, Bridget, and the hospice staff tried their best to prep my sister and me on what to expect that final week. Bridget explained that My Mom looked like she was sleeping, but really she was reviewing her life here on earth. Her soul was “processing” lessons learned. I had never heard of the processing concept. I saw My Mom’s eyes fluttering. Her face even looked contorted once in a while like she was receiving some interesting news. As Sunday moved into Monday, it was obvious My Mom had a little unfinished business, but for the most part my sister and I debunked the theories on the number of days the process could take.
We come from a really strong Catholic upbringing and when members of our family decide it’s time to go, they literally slip away. Exhausted from his duty of caregiving, My Dad waited for me to arrive to hand off care of My Mom, then snuck out in his sleep that night. My Aunt (a term that could never encompass what this woman meant to us) promised my sister’s girls she’d fight off terminal cancer long enough to spend Christmas with them. She died hours after the celebration. My Grandma waited for a visit from her youngest son before passing.

In her right mind, my ever faithful Mom would have made a quietly dramatic exit. She would have squeezed our hands one last time as she told us that death is a part of every life; she would have taken a nice soft inhale, possibly made the sign of the cross, then laid her arms across her chest and pass on. It was now Wednesday and we began realizing the problem. My Mom wasn’t an active participant in the process. Alzheimer’s robbed her of the most beautiful moment in life, the grace to pass to the afterlife peacefully. She couldn’t go on her terms because she didn’t know she could. My sister and I stepped up our duties. We followed suggestions from hospice telling My Mom repeatedly that it was okay to go, that we’d be okay. At times we begged her to go. We also tried praying, playing music and anything else that might help speed the effort along.
Exasperated, we formulated a scenario that maybe My Mom was waiting for Thanksgiving. A cousin that called concurred. My Mom owned that holiday. Turkey day was her favorite when she lived at home with seven siblings and she continued to cook the big turkey dinner for a crowd even after moving to a small townhouse when we were growing up.
Wednesday night I sat vigil alone. I felt so helpless as the clock ticked past midnight and My Mom’s shallow breathing continued. I stared at this amazing woman and wondered what she would do in my shoes. The answer came immediately. She’d pray. I chose to recite the rosary out loud. I’m an active Christian, but my Catholic skills have slipped over the years. It took the first ten Our Fathers just to get the rust out and get the words right. As my fingers crawled along the blue beads, one phrase kept echoing louder and louder in my brain, “Thy will be done.” I felt like such an idiot. As I continued the prayer ritual I found myself all but wailing. This transition would strictly happen in God’s time. This private and holy interaction was solely between He and My Mom. I could witness the sacred event, but no matter what I tried I would never affect the timing. Between sobs I apologized profusely to My Mom for anything and everything we had done that week that made her feel rushed or maybe even irritated. I thanked God for the enlightenment, then settled in the chair feeling absolutely relieved to wait peacefully for the blessed moment, resigned that it could take forever and that would honestly be okay.
Around 3 am a robust, dark skinned nurse knocked lightly on the bedroom door. She entered, but never even looked in the direction of My Mother lying on the bed. She turned her focus immediately to me, speaking in a strong Caribbean accent. “Some people,” she said waggling a finger in an “s” shape in front of me, “say they are ready,” the words trickled out slowly like thick syrup being poured from a bottle, “and they are not.”
As if the encounter of the rosary weren’t enough, I seriously felt like I was in my own version of Scrooge, experiencing a series of powerful visits from spirits during the night. How could she have known I just had a major epiphany? “I know, I know,” I told her. “It’s God’s will…” The woman stood calm, surrounded by an aura of gentle knowing while I babbled like a child. “Yes, this is between your mother and her Maker, but she waits on you.”
“I’ve told her it’s okay to go,” I started to explain, then remembered with absolute clarity why we were having a middle of the night visit from hospice. At around 9 pm My Mom’s breathing had slowed to virtually non-existent. She surely had passed away. Instinct took over and I jumped from my chair yelling “Mom! Mom!” My voice worked like the paddles they use to revive heart patients. Startled, her breathing resumed. I knew immediately I had made a mistake. My sister had told me she did the very same thing with my aunt during her Christmas day passing. It’s human nature I’m sure. The problem was My Mom’s breathing grew a little raspy after the incident. I wasn’t sure she was comfortable, so we summoned hospice. And now looking at the face of this lovely stranger that responded to that call, I had to confront the truth. I had been telling My Mom all week that I was ready and when the moment arrived I proved I was not.
It completely freaked me out that this woman from the islands knew my truth before I did, but I was thankful for the second powerful lesson that night. I didn’t need to confess. She evidently saw the realization on my face.
“Pray for the ability to release your mother,” she said. “Pray for the strength to let her go.” Finally she approached the bed. “She is comfortable,” she told me, “in fact she is speeding up her process.”
Just hours earlier I would have tried to explain that members of our family usually pass quickly, I might have asked how long she would predict My Mom might last. I wasn’t the least bit tempted to comment. I thanked the woman for the visit and welcomed her warm embrace. The timing was in God’s hands and I had work to do before that hour arrived.

I welcomed the sunrise, not to leave the bizarre evening behind but to spread the news. I eagerly greeted Bridget when she arrived for the dayshift and I called my sister anxious to explain my revelations to both of them. It was Thanksgiving. My sister came early, but I told her that our Mom would want her to spend time with her family. She agreed and went home feeling at peace. She too seemed to come to terms with the process.

I spent the day quietly thanking My Mom for all the amazing things she had taught me over the years. The life lessons, skills, confidence and faith she instilled in us since our childhood overwhelmed me. My sister had been recollecting my mom’s days of teaching Sunday school and Monday night catechism at the church a lot lately. I barely remembered those days. She only did it for a few years, until economics forced her to return to work in accounting at Chrysler. I think my sister remembers it so clearly because My Mom was a born teacher. She lit up telling stories to the kids and leading them in song.

Returning to work wasn’t My Mom’s first choice. I know she would have liked to have stayed home and made teaching her two daughters her primary occupation. She cherished teaching us to walk, to ride a bike, to cook, to write, to laugh, to drive, to primp and to pray. Of all her accomplishments as a parent, by far she was the most proud of raising us to be independent. (Although her son-in-laws took exception to this attribute.)

As I ran though the incredibly long list of gratitudes at her bedside that day, I realized the culmination of all her efforts over the years had equipped me for this moment. She had prepared me to be mature enough and secure enough in faith to say goodbye and to know our parting would not be permanent. By clinging to life that week she gave me the opportunity to do a little processing of my own.

When I told her that night it was okay to go, I meant it and I know she heard me. I chose to go home that night in case she wanted to slip out privately in her sleep. I arrived the next morning to see a little smile on her face. I called my sister and told her Mom was ready. “I think she already saw Dad and her sisters,” I said. “She has the cutest smile on her face.”

I drew a chair up close and sat silently with My Mom. There was nothing more that needed to be said. This time as she drew her final breath and her heartbeat ceased I remained still. She was teaching me her final lesson on this earth -- how to let go. Incredibly peacefully and with dignity she showed me how to answer God’s call.

Wednesday, December 7, 2011

Seriously? (November 2011)

I made it through my business presentations the past two days. The activity kept my mind off the berevity of the situation with My Mom. I'm praying for her to have a peaceful passing when God is ready and that I will be able to gracefully let her go. I also called my sister and sounded the alarm saying she should head over and see Mom before it's too late.
I somehow transformed from a sobbing, grieving mess to a hopefully spiritually mature daughter preparing for the inevitable -- this is, as My Mom said so many times over the years, "part of life."
Tonight I had the energy and resolve to call the home. "How's our patient?" I asked tentatively.
"She's fine," said a chipper caregiver. "She's sitting up tonight. She's eating dinner." I listened in disbelief. "Would you like to talk to her?" she asked.
"What?!" I gasped out loud.
The caregiver explained that My Mom was having a really good day. (We later thought perhaps she had a minor stroke earlier in the week and had recovered. Who knows when you're 90 and in the full throws of dementia, it's always only a guess. One thing was clear, something had changed.)
Since back when My Mom was able-minded we've had a phone mantra. I always start a call by saying "Is this My Momma?" and she always answers with "This is your Momma." Because we've done it so long, she's maintained the exchange even though she no longer fully understands what talking on the phone is all about.
I took a deep breath and allowed the caregiver to put My Mom on the phone, completely uncertain of what would happen. Sitting up and eating dinner were both open to interpretation. Her idea of a 'good day' may still be far below par.
"Is this My Momma?"
"This is your Momma."
I'm sure I turned white as a ghost. I struggled to not drop the phone.
"How are you?" I asked loudly, so excited to have a conversation with My Mom past the expected due date.
"Well I'm fine," she said sounding like My Mom did 20 years ago. "I guess I'll see you this weekend." (the weekend part was purely an educated guess. For years I arrived for a visit on a weekend. But she had put two sentences together. That was unbelievable.)
"You will!" I said. I expressed enthusiasm. Not that she had risen from her death sentence. Honestly, I was just excited that she had communicated so definitively. It has been at least a month or two since she sounded so sure of herself. It wasn't until after we hung up that I began trying to process the unexpected turn of events.
My sister was taking the next day off work to rush over. The first thing I needed to do was let her know that I may have sounded a false alarm. A nurse, my sister still wanted to visit and check My Mom's vitals. She's the one that came up with the stroke scenario. She wanted to see it for herself.
When My Mom first moved to the home one of the caregivers used to call her Lazarus. She'd sleep for hours on end, when this gal would think she was out cold, she'd scare the wits out of her by suddenly walking up behind her in the kitchen.
I don't know that I see My Mom getting up and doing any walking, but having my sister take a look at her tomorrow seems like a good idea.
I don't want to go through this emotional roller coaster on my own.

Will it EVER be the Right Time??? (November 2011)

I left My Mom last night sobbing my little head off. She was slouched to the side in her wheel chair, barely responsive, a little crumbly mess. She looked hopeless. I felt beyond helpless. I don't even know how I navigated the one block drive. I woke up this morning and cried some more while I packed for a business trip. I stopped by the home on my way to the airport and kissed and hugged her as if it were for the last time. When I said "I love you," she mumbled "thank you." More often than not that's been her response lately. Sometimes she still says "I love you too." On those days there's complete recognition of who I am and what we've been through. There's undoubted sincerity in the sentiment. She knows it's me and not one of the caregivers she's come to rely on for daily activities.
I held it together during the short visit, then cried all the way to the airport, sat like a zombie on the plane and then sobbed and wailed for an hour in the privacy of my hotel room where it dawned on me -- that probably was the last time I would see her.
Our physician always called me the ESP Caregiver. I'd take My Mom in for an appointment and say "something's not right." He'd always ask me to be more specific with symptoms, I'd tell him I just know it's a urinary tract infection. I could tell by her personality. Sure enough, I'd be right. It took only a couple of visits before he and his nursing staff began to trust my gut instincts. It took three tries to find a suitable, caring doctor for My Mom, we found a gem in Dr. Langdon and his staff.
I wished like anything I could call him this time, but I knew there was nothing he could do. My gut instinct told me there was nothing I could do either. There were others waiting to help her this time. As I lay exhausted in the hotel room, I had a clear vision of My Dad and all of My Mom's sisters anxiously waiting to greet her in heaven. It was a heart warming sight, yet heart wrenching all at the same time.
We've had the most amazing 3 1/2 years together. Late in life bonding I wish every Mother-Daughter could embrace. They are truly the best years of my life. I have no regrets.
I see the love on the faces of those waiting for her, I know it's for the best, yet I wonder if I'll be able to let go...

Highlights from the Home (September 2011)

My sister and I chose a private care home for My Mom. Per state law, it houses six residents max. When Wyn first moved in they were down to only four, so she received lots of personalized attention. Obviously there are pros and cons to going with a smaller home versus a larger fancy facility. New features for family members, like a cappuccino bar and frozen yogurt station were slightly enticing, but after the bureaucracy of the rehab place, it was a no-brainer for me. I didn't even factor cost. I wanted a homey atmosphere and control over the care of My Mom. I wasn't sending her back to a big facility to let her decline because "that's the rules."
I don't want to hurt any feelings when I describe our private care experience. I have truly adored all the staff that have come and gone over the past year. But yes, they come and go with much frequency. One of the pluses is that the home is directly across the street from my condo -- I can pop in for visits several times a day. I still feel very hands on with her care. (And I never feel like my appearances are spot checks. The system never fails us. It runs like clockwork.) The negative is, the owners don't pay well so the new hires either don't have highly evolved skill sets or they don't stay. They're always nice. That's been a bonus. Same with the food. It's not what I would serve, but with her condition we became more concerned over calorie intake than quality. Frozen fish sticks became part of our lives. We had a couple of amazing people that have stayed the duration, including the facility manager. Overall, the pros by a long shot out-weigh the cons.
My biggest concern was feeling comfortable. I still wanted to spend the bulk of the day hanging out with My Mom like I had when she lived with me, but I didn't want to get in the way of household operations. The original three caregivers were amazing at making me feel welcome. "This is your Mom's house. We're just here to help her. You need to act like you're at her home." They meant it. I felt pretty comfortable. I truly feel like all the staff members were extended family and the other residents for that matter too. For the past six months I even sat through dinner almost every night. Partly because My Mom ate better with assistance, mostly I enjoyed the company.
We had a number of residents come and go over the year. The house is set up in a ranch design with three bedrooms and baths in wings on both ends and a kitchen, dining area and living room in the center. It doesn't seem like there would be much privacy, but not once did I know when a resident fell ill, unless I was informed by one of their own family members.
In fact, twice, I wish I would have known.
The first incident took place when we first arrived, last November. I was encouraging My Mom to walk. We made big circles around the ranch home daily using her "wheelie". (She wouldn't use a "walker" because that's for old people, we had to tell her it was called a "wheelie" and sent by rehab to help her regain her strength.) One day I walked her to the opposite wing where we stumbled upon a large group of family members gathered outside a gentleman's bedroom door. It wasn't until My Mom was right in the mix that I realized the situation was dire. Then I had to get her out of there. Now, our 'command' to u-turn is "Alright, let's hokey-poky it", that means turn yourself about. Not exactly the kind of phrase you want to say in a hospice situation, but it's the only approach guaranteed to work. I tried it. My Mom swung the wheelie around, but just my luck, she started rubber necking to see what was going on. I had to get her out of there.
"Come on, let's see how strong you are," I encouraged. She decided to show off in front of the crowd and picked up a very strong stride heading back to the center of the house. Her head and back impeccably straight. Her gait unbelievably sound. "That's awesome," I continued to coax her away from the drama. "You are walking awesome."
She looked at the gathered family members, rolled her eyes and said in exasperation as if I was a nut. "Well, I should hope so. I've been doing it all my life."
Luckily they took the levity in stride. I think they even enjoyed a little break from their grieving.
Our next interference was a little too over the top to be appreciated by anyone. But again, it was a giant misunderstanding. This one occurred just a few months ago. Another solemn occasion and once again, I wasn't aware of it until it was too late.
We finished dinner and My Mom was having a particularly good day. I had given her a harmonica for Christmas last year, so I grabbed it out of the drawer and brought it to the table for a little after dinner entertainment. She played her heart out. When she first got the harmonica she could play just about anything. But a few months ago she became stuck on one tune. It doesn't matter what song you sing, she now hums "Oh Susanna." So we sang "Oh Susanna," to the tune of "Oh Susanna," then we launched into a few other old classics, but every time it circled back to "Oh Susanna." A rather raucous, lively version. I was so proud of her and feeling light and happy until, once her little lungs were exhausted, I went to return the musical instrument to the bottom drawer of her bureau. Along the way I noticed the door cracked open on the sweetest little lady's room. She was in her final hours. The cool thing about the private home is that residents stay til the bitter end. Most on hospice. And normally it's a quiet, peaceful atmosphere in which to go. This poor family should have been playing soothing music, praying, quietly soaking in final moments with their loved one. Instead any peace was being drown out by the wails of Oh Susanna, oh don't you cry for me on a cheap harmonica.
In this case the family could add the small homey atmosphere to the cons list -- they would have probably much prefered a giant nursing home with very long hallways and My Mom and I housed at the w-a-y opposite end.