October 23, 2012 · 8:30 pm

Dad in the garden

Dad was not a big fan of the outdoors. Mom pointed out recently how he would never sit out on the quiet, peaceful back deck of their condo. He did enjoy going on long walks, but that was about the extent of his connection with nature.

But at the assisted living facility that Dad was at for almost a year, he loved to wander the grounds of the garden. It was safely enclosed to make sure the “Memory Care” residents didn’t wander beyond the walls of the facility, but it also didn’t seem like a prison. I remember Dad taking jerking, stumbling walks around the sidewalk that lined the garden and encircled a gazebo area, where families could “socialize” with their loved ones.

The last photograph of dad and I together, July 2011. We are in the garden that was attached to the memory care unit of the assisted living facility.

Other than one “field trip” it was the only time Dad was able to breathe fresh air, to escape those long, dreary hallways of the locked ward that he was confined to due to his dementia. I’m not sure if he felt better outside or not. Towards the end of his stay there, it was so hard for him to get comfortable. We were never able to fully understand why. I guessed it was because he was so emaciated and the hard metal outdoor chairs hurt his body. At any rate, he could never sit still for long. He would have to fight his mind and body hard just to stand up again, then he would be off on his tottering pace that had me racing to catch up to him and offer him support.

Dad never had a green thumb, but at the end of his life, he learned to appreciate his time in the garden.

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October 22, 2012 · 7:09 pm

A prayer for being blessed

Mom told me she says a prayer each night. It’s the last thing she does before going to sleep. It’s nothing fancy or long-winded. She simply says, “God, thank you for these blessings.”

Mom has said this prayer through much strife, including when she was Dad’s full-time caregiver as he struggled with growing dementia. On those lonely nights, that prayer may have felt hollow, as she listened for Dad getting up in the middle of the night to wander. During those long days and nights, there may have been more bleakness than blessings.

Family caregivers dealing with dementia may often feel alone and hopeless. Having to worry about someone 24/7 doesn’t leave much time for meditation or reflection.

Now Mom is struggling with her own health issues, but she continues her nightly prayer to try to keep things in perspective. For her, each day is a new struggle and a new opportunity.

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October 21, 2012 · 9:16 pm

Sunday phone calls

Back when my life was relatively normal (which seems like a dream but which I obviously took for granted) I would call my parents once a week, on Sunday afternoon. We live thousands of miles apart (me in Georgia, my parents in New Mexico) so in-person visits were rare. But I would faithfully call each Sunday, even though I dreaded the intrusion on my personal time. I worked hard, and treasured my weekend time.

Most of these conversations were all Mom. She was the one with the need to talk, and tell me every minute detail of the week. She was lonely, and needed someone to talk to. Dad was more like me, generally reserved unless he really hit it off with someone.

I remember there were times when Dad was sinking into dementia and Mom would put Dad on the phone. Frankly, I dreaded these talks with Dad. It was clear he was losing his mind from the way he would instantly forget what he was talking about to the random questions he would sometimes ask. The conversations worried me and made me feel guilty for not being there to help out Mom.

This summer to now, Sundays have been very strange. I’ve either been visiting Mom in the hospital or nursing home, or taking care of her at home. I almost miss those Sunday phone conversations that I used to dread.

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October 20, 2012 · 6:56 pm

One of Dad’s last homes gone

It’s been 10 months since Dad’s death. It’s hard to believe so much time has passed, and all of the events concerning my Mom’s health that have taken place since then.

Recently, I walked by what was once the assisted living facility that Dad stayed at oh-so-briefly beginning around this time last year. He was so sick by then that I don’t think he realized how close he was to home. The owner of the facility was not well-liked in town. It was a big struggle for her to get approved to open the 3-bed facility, and she only lasted in town about a year before she had to close.

The window on the right was where Dad’s room was at the assisted living facility.

I visited Dad’s room once there, when he was sick in the hospital across town. The building was kind of run-down and looked like it could have once been a medical office or business of some sort, so it did not have a homey feel to it all. It was chilly and a bit damp. They had ordered him a new bed to prevent bedsores. The owner was trying to find a chair for the room so Dad could sit in it when he returned.

I don’t know if she ever found that chair, or if he ever set in it. He returned back to the facility for a brief few days before he landed back in the hospital, even more ill than before. He then ended up in Albuquerque, where he eventually died.

The space where the assisted living facility used to be is undergoing an extensive renovation. It looks like the insides are being gutted. I don’t know what’s going to replace the facility, but I’ll always remember it as one of Dad’s last homes, no matter how brief his stay was there.

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October 19, 2012 · 6:29 pm

The way he was before

Mom talks about Dad a lot, both before he had Alzheimer’s and when he was suffering from the terrible disease. But her favorite phrase to use when she talks about how much she misses him is, “The way he was before.”

Mom follows it up by saying she could never wish Dad back with dementia. She says it would be too cruel and too selfish.

I agree. It’s always difficult to let go of a loved one, but sometimes death is a release, and should be embraced instead of feared.

No doubt everyone who has ever had a loved one with Alzheimer’s has longed for a return to the way their loved one was before. It’s almost like a new way of indicating time: B.A. and W.A. Before Alzheimer’s and With Alzheimer’s.

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October 18, 2012 · 7:07 pm

Dad’s love of ghost stories

Halloween is in the air. Decorations are everywhere, even in the bank where my Dad once had his accounts.

Dad wasn’t big on the Hallmark version of Halloween. He was never a big fan of candy and he was easily bored with the trick-or-treating and other kid-friendly events that my parents hauled me around to as a kid.

Dad did enjoy a good old-fashioned ghost story. Despite his penchant for vivid nightmares and his own encounter with a violent ghost in a hotel, he enjoyed the spooky adventures told by others. He loved to retell famous ghost stories as well, where he could show off his acting skills that he was never able to develop into a professional career.

To this day, Halloween is one of my favorite holidays. I love scary stories and movies, and yes, I have a sweet tooth!

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October 17, 2012 · 9:01 pm

A return to normal?

So some good news today, and boy did I need some! Mom and I went to see the oncologist, which I was dreading. I had read it was pretty standard for oncologists to order a round of chemotherapy to prevent a recurrence of cancer. I’ve also read the accounts of the wise, brave souls on The Colon Club forum and have a better understanding of how brutal chemo treatments can be, with side effects ranging from the expected (nausea, fatigue) to the bizarre (cold sensitivity so severe that you can’t open the refrigerator without wearing gloves!)

Of course chemo has saved lives, and if an individual chooses to fight their cancer with chemo or radiation, I offer my support and my admiration. I just didn’t feel like it would be the right course of treatment for my mother.

Mom and I at the nursing home on my birthday.

When the oncologist began to talk to us, she said the normal regimen was six months of chemo. My heart sank like a stone. But then she followed it up by saying that due to my mother’s age and the fact that she was beyond 8 weeks after her surgery (due to blood clot complications) that the chemo would not be a benefit to her, and could actually do her real harm. I was pleasantly surprised that the oncologist was honest about the side effects of chemo, especially on the elderly. She said if it were her own mother, she would also not recommend chemo, instead she would suggest a “wait and watch” approach.

That was music to my ears. It was exactly what I was hoping for. So yes, Mom’s cancer may come back at some point. Six months, six years, no one can predict that. But at least Mom can enjoy a better quality of life in the here and now. She’s actually feeling quite well after recovering from her colectomy, and her appetite is great. I don’t want to take all that she’s worked hard to regain from her.

And yes, on a more selfish note, I hope to return home to Atlanta after setting up some kind of additional companion care for Mom.

Just like when we finally had to embrace the fact that Dad had dementia, our lives will not be the old normal again. But at this point, the new normal sounds pretty darn good.

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October 16, 2012 · 9:05 pm

The journey of a loved one’s ‘hard-earned’ earnings

Today we finally received a check for the funds in one of my dad’s bank accounts. It’s not a huge sum, but certainly it is very useful right now as Mom struggles with her own illness and growing medical bills.

The funds were from Dad’s IRA accounts, opened up when I was just a little girl in California. All of those long, tedious hours Dad worked as a freight checker for a trucking company finally have reached their zenith. Little by little, he faithfully placed funds out of each paycheck into these accounts. And now that financial symbol of all of his hard works rests in my Mom’s hands.

From Dad’s hands to our mailbox, the legacy of a lifetime of work is typed onto a piece of paper, to transform into additional numbers in my mom’s bank account. Of course, Dad being a faithful breadwinner means much more to me than a check. It was how he expressed his love for his family.

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October 15, 2012 · 8:16 pm

Each moment matters

I’ve had back-to-back tragic news to absorb over the past week. A daughter of a former co-worker was killed in a terrible car accident. She was only 28 years old. She was able to cling to life for almost a week before passing, so at least her family and friends had the opportunity to say goodbye, even as their hearts were breaking.

Then I learned that a local writer who taught a memoir writing class that I took last year passed away suddenly. She was only 50, and was such a vibrant, bright, witty person. She had suffered from seizures since being in a bicycle accident while in college. It is believed she had a seizure in her sleep.

Photo taken after the completion of the memoir writing class with author Julie L. Cannon. She is in the center with dark hair; I’m second from the right.

I only spent a few Saturday afternoons with this charming woman, along with a group of equally interesting writers. At the time, I was just beginning to try to write about Dad, and his experiences with Alzheimer’s. This blog was started with some of the building blocks I learned in her writing class. We had to submit a brief piece or two for critique and I remember being secretly proud as the teacher mentioned how moved she was by my work (she didn’t realize I was in the room at the time). She let us peruse her giant file of notes that she kept as she wrote her novels. It was a fascinating look inside the mind of a writer at work.

So two sudden deaths, lovely people with so much to offer to the world who found their lives cut tragically short. Beyond the despair, there’s a hard but valuable lesson to be learned. Life is by the moment. Not all of those moments will be wonderful or memorable, but some of us will have less time on this planet to make our mark than others. So we must use our precious time wisely.

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October 14, 2012 · 2:36 pm

Room service blues

This week, I will be spending a few days at a resort hotel in Ruidoso, where Mom still lives. I’ve stayed there several times, but one stay in particular sticks with me.

It would turn out to be just a few months before Dad became sick and never returned home, of course, we didn’t know that then. All we knew was that Dad’s mental state was continuing to decline. I went to visit Mom and Dad for a few days. During the stay, Dad hit Mom in the chin, claiming he was “shadow boxing” and Mom got in the way. They were supposed to come visit me at the hotel the next day. Mom was able to put on makeup to cover the bruise on her chin, but she wasn’t feeling much up to being out in public with Dad.

We had planned to eat at the hotel restaurant but I thought that would be a bad idea considering the circumstances, so I suggested room service, an indulgence my parents would never dream of normally. Surprisingly, Mom agreed quite readily. It was such a strange, awkward and sad meal. Due to my food allergy issues, the safest thing on the menu for me to eat was the lobster tail. I later wondered if Dad, who was hallucinating quite frequently by that point, was freaked out by the sight of the lobster tail. If he was, he didn’t let on. He gobbled down his burger with relish, completely oblivious to the sadness choking the room.

This time, Mom is the one ill but I hope my stay turns out to be a more positive memory.

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