The Next Leg

I have often referred to taking care of my elderly mother as a journey. One I am sharing with her as she travels deeper into dementia and the final stage of her life. It has been a bittersweet journey. One filled with great joy and great sadness.

She is not exhibiting any behavior that is out of the norm. And one of the lessons I have learned is that dementia can be very predictable. Loss of short-term memory. Confusion in unfamiliar surroundings. Anxiety over the loss of both mental and physical abilities.

The longer I have traveled this road, the easier it has been to define the patterns of decline. Typically, we roll merrily along at status quo, then we slam dunk into a downward spiral where her mental abilities plunge. Then we hit a plateau and roll merrily along again. Then we repeat the cycle.

Over the past two months my mother has been in a severe downward spiral which has taken me to a much higher level of concern. Her short-term memory is almost completely shot. Her anxiety level is increasing at an alarming rate. This combo sets her into a repetitive cycle of activity, because she can no longer retain any memory of a recent activity.

When she pings the nurses at the assisted living facility, asking them repeatedly throughout the day for her medications…and they reassure her, once again, that she has already received them…that is par for their course. Because the nursing staff considers responding to my mother and the other residents, who are also exhibiting the same symptoms of dementia, as simply a part of their daily duties. No worries.

But when my mother swears she hears a fan whirring in her room, or a buzzing sound or a clicking noise coming from the thermostat which regulates her heating and air conditioning…and she keeps insisting that the maintenance staff come fix it…this is not par for their course. Because the maintenance staff does not consider responding to four calls a day from my mother…simply to reassure her that all is the same as it was two hours ago…as a normal function in the course of their normal day.

So, how do I fix this? How do I find a solution? What can I do? The answer is simple: nothing.

There is no magic button to push to make this go away. While there are medications available to alleviate her anxiety, the side affects may far outweigh any benefits. So, once again I find myself swirling around in this downward spiral, watching my mother spin further and further away. Only now, she is making it difficult for the folks who are caring for her. And that is a problem and one that does need to be addressed. So, I am once again relying on the professionals…working with our family doctor and the head nurse at my mother’s facility, to determine where we go from here.

I am also relying on my personal support staff. Friends who have already traveled this road with their parents. Gal pals who have already taken this journey with their mothers and come to the end of their road. Their reassurance that I am still on track and heading in the right direction has been comforting.

I know I am doing all that I can. I know this stage in my journey is par for my course. And I know that my road ahead will only get bumpier.

In Sympathy

One week ago today, my friend’s mother passed away quietly and peacefully at her home, surrounded by family. She was 89 years young. She had suffered a mild heart attack a few weeks prior, and was unable to recover. My friend comes from a large family and they honored and celebrated her mother’s life in grand style at the funeral.

Tomorrow marks the one-year anniversary of the passing of my oldest and dearest gal pal’s mother. When I spoke with my friend not long ago, she said she was surprised at how teary-eyed she has been at the approach of this day. She has already experienced many of her “firsts” this past year. First birthday, first Thanksgiving, first Mother’s Day. But for some reason, this “first” was hitting her harder.

I told my friend there is no specified timeline for grieving the loss of a loved one, and especially not the loss of a beloved parent. And I shared an experience with her that I had almost a year to the day after my father had passed, when I was a young 20-something, setting out to conquer the world.

Every day my father would call me at my office and tell me the most campiest and silliest and stupidest of jokes. But they always made me laugh, and I know that was his intent. And after he passed, every day when my office phone would ring, my first thought was that it could be my dad. My second thought was that it could no longer be, and a sense of sadness would pass over me.

Then one day as I was driving home from work, I suddenly realized that every time my phone had rung that day, I had not expected it to be my father. And within seconds, the tears were streaming down my face, and I had to pull off the road because I could not see to drive. As I sat along the shoulder of the highway, I came to the understanding that it was not the loss of my father that was prompting my tears.

That had been the first day that I had not thought of my dad. The first day without that familiar sadness for my father’s passing. The first day that I had laughed and joked with my co-workers without any feeling of remorse. And I suddenly realized I was not grieving the loss of my father. I was grieving the loss of my grief.

Sounds a little odd-ducky, I know. But grief can become like a comforting, warm blanket we snuggle up in to keep out the chill of a winter’s night. It can become so much a part of us, that we forget we can let it go.

As I told my friend, there truly is no specified timeline for grief. We all handle our grief in our own way. And when the time is right for us, we can let it go. And continue with our lives, remembering all the good we shared with our loved one, knowing that they will always remain in our hearts.

The Call

Three words that are music to your ears: “Your mother’s fine.” One word that can make your heart skip a beat: “But…”

In the soon-to-be-two-years since my elderly mother has moved into assisted living, I have learned not to panic when the phone rings and I see the caller ID for the facility where she is now living. Most often it is an administrative call regarding a change in the billing procedures. Or a housekeeping call regarding a laundry issue. Or a social call with a personal invitation to Family Day at the Villa.

So when the phone rang a few days ago, late in the afternoon as I was finishing up my work day and I saw the caller ID for the Villa, I did not immediately think there was a problem. Until the voice on the other end of the line identified herself as one of the nursing staff. And she said, “Your mother has fallen, but she has not been admitted to the hospital.”

WHAT???

“She fell forward onto her hands and knees as she was getting up from her bed. I was bringing her meds to her before dinner and when I walked into her room she was on the floor. I helped her up and she seems fine.”

HUH???

“She was laughing about it, actually. And yes, she walked down to the dining room for dinner without any problem and does not seem to be in any discomfort. And yes, we will keep an extra eye on her tonight. And again tomorrow morning and throughout the day.”

YA THINK???

“I told her she almost gave me a heart attack when I walked into her room and saw her on the floor. I asked her what happened, and she said was sitting on her bed putting on her shoes and when she went to stand up, her foot caught the corner of the bedspread and she fell forward. She said the only thing that she hurt was her dignity.”

JEEZ-LA-WEEZ!!!

When I called the next morning to get the nursing report, I was once again reassured by my gal pal, the head nurse, that my mother was indeed just fine. She had gone down to the dining room for breakfast without any problem. She did have a red mark on her one knee, but there was no bruising. She was not in any discomfort. But they would continue to keep an extra eye on her.

When I saw my mother the next day, I was amazed and relieved to see that she really was just fine. Her eyes were bright, her smile was wide and her spirits were good. As I put away the clean laundry I had brought, and took inventory of her personal care items, we had a nice little chat about recent family events and the latest antics of my two puppies. As our visit was ending, I asked her about the fall. She showed me her knee, and I’ll be darn if there wasn’t nothing more than a small red mark.

I am thankful that this little episode had a happy ending. Because I know the day will come when I will get a call and she won’t be fine. But I can’t dwell on that day coming. Because that will send me screaming into a room with a lot of padding on the walls.

However, I do admit, this little episode was a rude little reminder. Of how physically fragile my mother really is. But even with the dementia ruling her brain waves, her spirit is still strong. And I will continue to take my lead from hers, and keep my spirits strong as well.

Firefly Magic

We had a couple of strong thunderstorms blow through our part of the world last week. Which is not that unusual for this time of the year, when the heat and humidity builds throughout the day, causing storms to crop up whenever their mood strikes.

One night after dinner, as my husband was enjoying his playtime with our two puppies, I stepped outside for a bit of quiet time at the end of a long and hectic day. I sat down on the steps leading down to our backyard and looked towards the horizon. It was that time of the evening when the sunset was nothing more than a hint of a reflection on the remaining clouds hovering over the ridgeline. The storm had passed a good hour before and darkness was rapidly invading the tree grove surrounding the pond at the edge of our property.

Then suddenly, as if switch had been turned on, the tree grove erupted with flashes of soft white lights. Small and twinkling, like starlight coming down from the sky to play with the cool breeze whispering through the trees.

Fireflies. Hundreds and hundreds of fireflies.

At first I simply smiled at their show. But the longer I watched, the more fascinated I became with the rhythm of their dance. It was hypnotic. And all the challenges and annoyances of the day vanished from my mind.

I am not quite sure how long I sat there. It could have been a few minutes. It could have been a few hours. Finally, I broke the trance and went back into the house. And I told my husband he should take in the show, which he did. When he came back inside, he had the same look of wonderment on his face that I knew I had on mine.

I decided the experience was a keeper. But rather than take a photograph, I decided to treasure it as a memory. In my mind, I wrapped it up in a pretty box with pretty bow and stored it in my memory banks in my pretty memory category, so I could bring it out whenever I needed a boost of wonderment.

A few days later, I had a routine visit with my elderly mother. And like the many people who are caring for a loved one who is suffering from dementia, I know I must always be prepared for any scenario. As it turned out, the visit held nothing out of the ordinary. But then, my benchmarks for what is ordinary and what is extraordinary seem to change on a daily basis. At least when it comes to my mother.

My biggest challenge lately has been dealing with my emotional responses to the deterioration I see, not only in her physical condition, but her mental condition. Each time I visit her, it gets harder and harder to keep the mask of normalcy on my face. And not replace it with a mask of debilitating sadness.

And until recently, the methodology I had developed was working just fine. But for some reason, a chink in my armor has appeared in these past few months. Perhaps I am simply on an emotional overload. My limit has been reached. It is as if I have developed an allergic reaction to watching this once lively and independent and intelligent woman who is my mother simply fade away before my eyes. What once I could handle, now seems unbearable.

Good news is I know I am not alone. I have my support system with friends who have been there and done that. And most importantly, a husband who is always at my side no matter the situation. WIth their help, and a personal treasure hunt to find that well of fortitude buried deep inside me, I know as long as I keep putting one foot in front of the other, I will be just fine.

And when the going seems as if it is getting too tough, I know I have my pretty box dressed with a pretty bow stored in the pretty memory category of my mind. And it is filled with the wonderment of an evening dancing with the fireflies after the chaos of a summer thunderstorm. It reminds me there is joy to be found, if you simply take the time to look and effort to see.

The Family Tree

My nephew and his wife are expecting their first child in a few weeks. Before they learned the sex of their baby, he told me they were hoping for a girl. Because they are raising his wife’s son from her previous marriage and thought it would be nice to have a girl in their family.

I told him that since he is the seventh son of the seventh son, perhaps it is time to break that boy-begets-boy streak with an eighth generation gal. He replied, “Huh?” I then explained that for seven generations in our family, the first born child has been a son.

I was surprised to learn my nephew did not know this. I was surprised that my brother never taught much of our family’s history to his children. I was delighted with my nephew’s sincere interest in our family’s stories as I began to share them with him.

To refresh my memory of the colorful characters dangling from the branches of my family tree, I dug out a faded-blue cardboard tube from the back of my guest bedroom closet. Two large pieces of fine parchment paper were rolled up in that tube, with 150 years of my family’s history, hand-written in old school calligraphy. By my own hand.

I am first-generation-born American on my father’s side and many-generation-born American on my mother’s. I am surely no pure bred, but rather a classic mixed breed. And while most of my mother’s heritage was not passed down to her by members of her family, all of whom had passed away long before I was born, my father’s history had been preserved in my paternal grandmother’s memories.

Quite a few years before my grandmother passed away, I got the idea to compile my paternal family history and write it out proper-like, and gift a set to each member of my family for Christmas. I started almost a year before the holiday, sitting down with my grandmother and letting her ramble on with no particular order or sequence. Who had married whom, and how many children they each had. Who had died in the Boar War and who had served in each of the World Wars. And to confirm the information was correct, I pinged my grandmother’s younger sister, who lived in England.

This was back in the day when all written communications was done by snail mail. There was no email or texting and definitely no internet searches. And the only time you picked up a landline phone was when someone was born or had died. And even then you watched the clock tick off the seconds, because you knew each minute of that international call was costing you a small fortune.

Along with the names and dates and who begat whom, I learned a lot about the people whose names are written on those pieces of parchment. Short little stories of their lives and personalities and dreams.

There was one story of a multi-great grandfather who had left Ireland because of the great potato famine. But as I grew older, that story morphed into a new scenario. One which included a pretty lassie, an irate father armed with a shot gun, and a fast horse that supposedly carried the two lovers, riding off into the Irish sunset.

But the thing is, that potato famine story never did compute. When I did the math, I realized my multi-great grandfather was born 25 years after the potato famine. But he did leave Ireland and moved to Scotland where he changed his name. And he did marry his childhood sweetheart and they had 14 children. So I have to believe there was more truth to the story of the irate father with the shotgun and the fast horse.

And there is the story of my own father, immigrating from Scotland when he was seven years old. For the two years prior, while his father was in America working and saving money to bring his wife and son across the pond, my father and his mother remained in Scotland…living with various relatives so as not to wear out their welcome at any particular household. My father was regaled with tall tales of cowboys and indians and buffalo. And how in America, the streets were paved with gold.

So when the boat docked, my father wrenched his hand from my grandmother’s grasp, and bolted down the gangplank and ran into the streets of New York City. When my grandmother and the police finally caught up with him, he stood in the middle of the street, his fists clenched in anger as he stared at the pavement. He looked up at his mother with tears in his eyes and shouted, “You lied to me! You lied to me! These streets are not paved with gold!”

My grandmother put a hand on each of her son’s shoulders, looked straight into his eyes and replied, “In America, you make your own gold.” And out of the mouth of that seven-year-old lad who would grow up to become my father came the reply, “Oh. Alright then.” And he and his mother walked hand-in-hand back to the boat, their police escort shaking their heads with relief that the young immigrant boy had not been harmed in the escapade.

These are the stories that breathe life into the names listed on the branches of my family tree. Stories which I know will be lost if not recorded and shared. So I have decided to dust off those two pieces of fine parchment, written by my hand in old school calligraphy, recording 150 years of my family’s history. And add my own memories to those of my paternal grandmother and her sister, sharing the short little stories of the lives and personalities and dreams of those who have come before me.

I will add snippets of my paternal grandmother’s life and how her independent spirit and dedication to family guided every decision she ever made. And of my mother’s mother and how her passion for the outdoors and her animals shaped the course of her short life. I will record the story of how my mother received her name from her mother’s twin sister, upon seeing my mother’s delicate features and shining blue eyes for the first time. I will record examples of my mother’s intelligence and independence and compassion, so those family members who are yet to be born can learn about a woman who has had such a positive impact on so many people.

But I will not be writing out these stories onto a stack of fine parchment paper. Instead I will create an online version, as a gift to my family for next Christmas, if I can complete it in time. And I will not be wrapping up this family tree with shiny paper and a sparkling bow. Instead a simple text message to all on the afternoon of Christmas will suffice. And I will treasure the picture I will imagine in my mind’s eye, of my nephew sharing his family heritage, with his newly born son cradled in his arms.

 

Hitting The Wall

Yes, it has been almost two months since I have posted in this journal. And many thanks to the folks who have pinged me to see if all is well in my world. It is.

My self-imposed sabbatical has not been the result of a single catastrophic event. But rather the accumulation of a series of small events. Each unto themselves would be easy to digest. But when served in mass, they morphed into a beast of their own, reminiscent of a family dining table groaning with all the trappings of a Thanksgiving feast. Quite honestly, I would have preferred a light summertime repast of a fresh green salad and salmon cooked to perfection on the grill.

Since we last chatted, Mother’s Day has come and gone. And my mother’s 94th birthday. And Memorial Day. And I celebrated these holidays amidst the chaos of the past few months. I have come out the other side with a greater appreciation of life’s simple pleasures which can be discovered, but only if we choose to look for them.

My biggest challenge has been finding, not the time, but the desire to write about my experiences in dealing with my mother’s physical and mental limitations. I seem to have hit that wall that so many of us caregivers do…we who are dealing with an aging loved one suffering from dementia.

I came to this stunning realization just last week, when I took my mother for her quarterly checkup with her family physician. A visit with our good friend, the “Doc”, whose support and encouragement have been invaluable to me. It has become painfully obvious that my mother is deteriorating at a much higher rate than ever before. And while this is to be expected at her advanced age, I suddenly realized that I am not as emotionally prepared as I thought I would be.

SPLAT. Yepper…that is the sound of me hitting that wall.

My mother’s physical abilities are continuing to decline. While she is in no more discomfort from the arthritis than she has been in the past, her mobility is becoming increasingly limited, which is affecting her daily activity. Yet it is the deterioration of her mental abilities that is the most heart-wrenching. Because recently, I have noticed we are moving from her short-term memory getting worse with each passing moment, to a marked confusion associated with her long-term memory.

At first I thought it was a slip of her tongue…a reference to a 60-year-old event in which some of the details got skewed as she shared her memory of the experience. But she is starting to repeat the same slips as she recounts the same story over and over again. Perhaps I should be thankful for her consistency.

I am finding myself in new territory. Unchartered waters, so to speak. Because over these past few years, I have developed the methodology to deal with her short-term memory loss. And now I must develop a methodology to deal with her long-term memory loss.

Do I correct her when she makes those slips of the tongue? Or simply smile and bob my head and let it ride? Does it really matter if she incorrectly states where she lived at the time, or when and where she worked at the time? Who is it really hurting if she can no longer correctly recall those details that, until just a few short months ago, where ingrained into her conscious thought?

And adding icing to our proverbial cake, my mother initiated a new pattern of behavior during our visit with Doc last week. Typically, the three of us sit and chat during the exam, and Doc will ask my mother how she is doing, including gently questioning her on how well she is remembering things. For the past few years, my mother has acknowledged that she cannot remember as well as she could before. But has always added that it “only just started a few weeks ago”.

This time when Doc asked her about her ability to remember, she again acknowledged that she does forget a lot now and said that if you tell her something, she will most likely forget the information until a much later time. If she remembers it at all. And for the first time ever…in all these years I have been taking her for her quarterly doctor visits…she looked me in the eyes and told Doc that I would be the better person to answer that question on her behalf.

DOUBLE-SPLAT. Yepper…that is the sound of me hitting that wall again.

As I met my mother’s gaze, I mentally took a deep sigh, then told it like it was…with as much diplomacy for her benefit as I could muster, while still maintaining the truth of it all for Doc’s benefit. And the relief I saw in my mother’s eyes was poignant. She wasn’t imagining her memory loss. Nor was she denying it. The simple act of hearing me describe it to Doc had made it a stark reality for her.

TRIPLE-SPLAT. Ouch…that one hurt.

Sometimes we are elected to a role which we have no desire to pursue. We wonder how the heck we even got elected in the first place. Other times we will embrace a new role and take ownership of it and run with it to the final conclusion.

My role as my mother’s caregiver is ever evolving. My duties vary as her needs change. My responsibilities increase with each day that passes.

Yet I cannot help wonder what the end of this journey will bring. Not literally…as I know what the final outcome will be. Duh-yup. But what new experiences will I have encountered? What new insights will I have learned? And I have to wonder, just how many more walls I will have to hit?

Holiday Heebie-Jeebies

Last year was my elderly mother’s first Easter in her new digs at the assisted living facility. She and I attended services in the chapel and I joined her for lunch in the dining room. While it was different from the previous year when she was still living independently and came to my house for the holiday, we had a nice time. And it worked.

However, this year I knew I would have to change it up a bit. Because for a person suffering from dementia as my mother does, a lot can change in a year. A lot can change in a few months. Oh, who am I kidding? A lot can change in the course of a few short weeks.

As this Easter Sunday approached, I realized I was not looking forward to this holiday.  I recognized the familiar sense of dread I have been feeling at the approach of every holiday for quite a while now. I become afflicted with a nasty case of the Holiday Heebie-Jeebies. Because I never know which “Mom” will be “in the house” that day. Will it be the happy gal who chatters away repeating the same stories, but with whom you can still have a pleasant visit? Or will it be the nervous twittery gal who is anxious and confused due to a change in her daily routine, which makes for a very unpleasant visit?

After giving it some thought, I opted to visit her at the assisted living facility again this year, rather than inviting her to my house for Easter brunch. But we did not attend services in the chapel. We did not share a lunch in the dining room. We did not go to one of the lounges on her floor.

We stayed in her room. I brought her flowers, arranged them in a vase and placed them on the table by her window where she could see them. I put away the personal care items I had brought her, took stock of her current inventory and made a list of items she would need on my next visit. Outside of that bouquet of spring flowers, it turned out to be pretty much of a routine visit.

We did have a nice conversation, since I kept it to topics which I knew would be easy to chat about, as has been my habit lately. And we enjoyed a laugh or two. I did extend my visit longer than has been our routine. Which raised my mother’s anxiety level since lunch was being served earlier that day because of the holiday. And as our visit was coming to its close, she kept her eyes on the clock, announcing the time every two to three minutes.

Hey, I get it. I’m not a total idiot. I understand that being on time for meals and activities is important to her. Which is why I schedule my visits with her to coordinate with her daily timeline and not what is convenient or easier for me. And holidays are no different.

What has become different for me is that I have finally had my holiday epiphany. I have made the conscious decision that while I will ensure my mother will have a pleasant holiday experience, it is as important that I have the opportunity to do so as well. And my personal holiday celebration will not always be shared with my mother.

Sometimes my holiday celebration will be shared only with my husband and my puppies. An early morning walk in the park. An afternoon sitting together outside in our backyard, with my puppies napping in the sun, while I finish the book I have been reading and my husband snoops through our garden books for seasonal inspiration. Or perhaps an evening of watching old movies in the peace and quiet of our family room.

I can honestly say I now feel cured of those nasty Holiday Heebie-Jeebies. I have been self-vaccinated with the realization that my holiday experiences are just as important as my mother’s. And I am not being a selfish person. Or cruel one. But I am learning how to be a survivor.