Seasonal Change

Even though Spring has not quite yet sprung in my neck of the woods, there is a distinct scent of change in the air. The sun seems brighter and the sky is more often blue these days rather than gray. The afternoon breeze feels refreshing rather than bitter. And the thought of warmer days brings a sense of joyous anticipation after the harshness of this past winter.

I enjoy each of the four seasons in my part of the world. And just when I seem to lose my affection for one season, the next rises to its occasion. It is this cyclical change which keeps my boredom at bay, and allows me to appreciate each season for the gifts it brings.

And very much like nature’s seasonal evolution, my role as my elderly mother’s caregiver has also evolved. And just when I seem to be running out of the emotional fuel I need to keep putting one foot in front of the other, somehow I magically discover a hidden treasure of strength buried deep inside myself.

I have learned, and more often the hard way rather than the easy one, that taking each challenge as it comes is the only way for me to survive. While keeping an eye on the larger picture can be a good thing in order to be prepared, it is easy to lose sight of the smaller details of the present. And since I do not have a crystal ball to gaze into and see what the future may bring, living for each day is truly a gift unto itself.

Because I know my mother will never get better. Because like a thief, the dementia steals pieces from her each minute of each day. Because her arthritis will only get worse, reducing her mobility in increments to minuscule to measure on a daily basis. But her heart and her spirit are still strong. And no disease or ailment can take these from her.

So, I take my cues from my mother. I follow her lead on this arduous journey we share. She is running point, not me. And as my role continues to evolve, I have chosen to look forward to each cycle like the anticipated change of a season.

It Takes A Village

Extended families, single parenthood and the idea that a village plays an essential role in the raising of a child are considered by many folks to be a more contemporary style of parenting than the traditional values of my mother’s generation. Many people tend to define her generation’s family unit as having one father, one mother and a gaggle of children.

However, when my mother was growing up in the city in the 1920’s and 1930’s, she had a large extended family living under the same roof. Her father had died before she was born and her mother remarried. My mother had her adoptive-father, a half-sister, a half-brother, and an uncle all sharing a household. Aunts and uncles and cousins who lived far away would often visit for extended periods of time. It was a full house filled with the sound of loving, albeit boisterous, voices.

My mother’s neighborhood was a mix of cultures. English and French. Polish, German and Armenian. Everyone shared their heritage with open hearts, along with the pride and loyalty they felt for their new country. It was a 20th century village tucked into the pocket of a large American metropolis.

At this stage in her life, my mother’s “village” is much smaller now. And like the raising of a child, caring for a parent suffering with dementia most definitely requires the help of a village. “Residents” include myself and my husband. Our family doctor along with the head nurse and medical support staff at my mother’s assisted living facility. And let’s not forget the housekeeping, kitchen and administrative staff as well. Along with her dentist and her foot doctor. And the all important hair stylist.

As village residents, we each have our primary role. Our secondary role is to keep an eye out for any change in my mother’s mental and physical abilities. And most importantly, sharing our assessments.

Without the help of our village, my road would be a much harder one to travel. Because I cannot be with my mother 24/7. Nor am I a medical expert. And trust me…while I consider myself a decent chef, you never want me to cut your hair. So, I trust my village neighbors to keep me informed and to let me know how they believe my mother is doing. 

And along with the regular reports I receive, I have been gifted an additional treasure. And that is the knowledge that my mother still has a positive impact on everyone she comes in contact with. It doesn’t matter that her short-term memory is rapidly deteriorating. She still greets each person with a smile and a warm hello. People still walk away from an encounter with her feeling better about themselves. She still has the power to make someone’s day brighter by simply being around them.

And no matter that her mental and physical abilities are in decline. In our village, she is still our matriarch. She is the glue that binds us together. She is the bright spot in our day. And I cannot think of a more fitting tribute to the great lady my mother has always been.

Staying The Course

I have taken my fair share of hits during my stint as my elderly mother’s caregiver, as have all of us who are cast in this role. I’ve ridden the emotional roller coasters, played enough “Woe is Me” games in the mirror to last a lifetime, and on more than one occasion have felt as if I was a character in a Twilight Zone episode. Or a Hitchcock movie.

It has not been easy to watch my mother physically and mentally deteriorate. And it’s not easy to wrap my head and heart around the sadness which accompanies this process. Nor has it been easy to juggle the logistics of my immediate family’s needs, and a full time profession, while managing my mother’s care.

But lately my mind has been wandering to another hit I have taken during this seemingly never-ending journey. And that is the loss of the relationship with my older, and only, sibling. The brother who bailed on my mother and me. My ostrich. Who stuck his head in the sand because what he cannot hear or see does not exist.

And I am not the only person who has had this experience with their family members. Unfortunately, it is all too common for one person to rise to the role of caregiver, while the rest of the family goes about their lives in self-imposed oblivion.

My emotional divorce from my brother has been like a death in the family. The eight year old boy who carried around a five pound bag of sugar wrapped in a kitchen towel for a week after I was born, simply to see what it would be like to hold me when I came home from the hospital…he is long gone. The tween who used to write up homework assignments for me before I was old enough to have my own, simply because I wanted to do what he did every day after school…he has long since disappeared. The man who became one of my best friends as I grew into adulthood and who I believed would always have my back…he no longer exists.

And that saddens me. As so much of this process of being my mother’s caregiver does. Yes, there is comfort in knowing other folks share the same experiences. It is good to know we are not alone. And it does ease some of the heaviness in our hearts.

But if I could invent a time machine and turn the dial to whatever time zone suited my fancy, I would revisit the days when my brother and I were pals. When we would send each other obnoxious telegrams on our birthdays, before email and text messaging were the kings of communication. When we would talk on the phone for hours, each seeking the other’s advice on a career decision. When we would get together for holidays or for an impromptu dinner when one of us was traveling for business to the other’s part of the world.

But I can’t turn back the clock. And I can’t repair the damage that has been done to our relationship by my brother, the self-imposed ostrich. And I can’t wish away the sadness, for that would make me an ostrich too.

I can forgive him, which I have done. I can hope that one day we will be able to reconnect, which I do. I can wish that he will not regret his decision to be an ostrich, which I fear will not be such an easy task for him to do.

All I can do is stay my course. Do what needs to be done for my mother and let my brother’s dust settle where it falls. And be there with a stiff broom when he is ready to lift his head back outta the sand.

Playing The Blame Game

When I started my journey as caregiver to my elderly mother, I knew I had a long road ahead of me. First I had to wrap my head around what was happening to her so I could help her. Then I had to find a solution for each situation as it evolved. And I had to process my emotional responses and learn to cope.

Anger. Frustration. Confusion. These were my three primary emotional responses and still are to this day. Yet the toughest challenge I had to overcome was to learn how to properly play The Blame Game.

I could easily blame my mother. Or my only brother for bailing on us and dumping all the responsibility for my mother’s care into my lap. Or modern medicine and its professionals for not finding a cure for every condition that afflicts my mother.

But somewhere early on in my journey, some magical switch went off in my head. I knew in my heart that I could not blame my mother. It’s not as if she wakes up every morning thinking of new and devious ways to twist the knickers of her daughter. She didn’t ask for the dementia. She doesn’t want to be limited in her mobility because of the arthritis. She is angry and frustrated and confused too.

The difference is that she is the one living with dementia on a daily basis. I am just a participating, albeit concerned, bystander trying to help her. It’s not her fault. And if I want to get angry, I should target the disease. Not her.

And maybe my brother for being a jerk. However, I do admit that I have long since forgiven him. And not for his sake, but for mine. Well…I have almost forgiven him. Because I have embraced the right to keep a little bit of anger tucked away in a corner of my heart. For those tough days when I need it as fuel to power through a difficult situation with my mother. And so I don’t direct all that negative energy at the wrong source.

Maybe that is why I invented my mother’s invisible playmate, the illusive Missy Dementia. It gives me the luxury of venting to the disease and not the person afflicted with it. Because I know that I need to take care of my mental and physical health as well as my mother’s. Because I know at the end of the game, I will be the one left standing.

Rockin’ The Roller Coasters

I rarely wake up in the morning dreading the day, but two days ago I did. Because my mother had her quarterly doctor appointment that afternoon. And it was not just a matter of the logistics of carving out a huge timeslot from my busy work day. It was also a matter of the emotional and mental fortitude I would need in order to survive the excursion.

When dealing with a mother suffering from dementia, I never know what I will be encountering. A happy gal ready for an outing? Or an angst-filled woman repeatedly obsessing over the small details? Or a bit of both?

Which emotional roller coaster will I be riding today? The kiddie coaster with the brightly colored balloons painted on the side of the cars? Or the Thunderbolt coaster with the terrifying twists and turns threatening to launch me from my seat?

As it turns out, I was gifted a ticket for a “two-fer”, and took a ride on both coasters. My mother was in good spirits. But she excelled in the repetitive obsession portion of the day. Her visit with the doctor was pleasant and the medical report was positive. But the trip required a Herculean effort to manage her transport.

I was able to meet with Head Nurse “Kay” at my mother’s assisted living facility before I went to my mother’s room to pick her up. I like to do that on a regular basis so we can compare notes. Plus it is handy information to share with the doctor. While my mother is doing well with her daily routine…going to the dining room for her three squares a day, participating in the weekly exercise class and going to play bingo a few times a week…Kay’s report was not good regarding my mother’s ability to retain information short-term.

Both Kay and I have noticed a rapid decline in the past few months in my mother’s short-term memory. Kay cited examples in regards to my mother receiving her medications. A nurse will give my mother her meds, then before the nurse is even out of my mother’s room, my mother will say, “But you didn’t give me my medicines.” Or, the nurse will administer the meds, walk out the door, then my mother calls up to the nurses station saying she had not gotten her medicines yet. It seems my mother’s retention has now been reduced to nano-seconds.

At the end of our meeting, Kay’s parting comments tugged at my heart. She said, “When we tell your mother that we just gave her the medications, she always apologizes. She says how kind everyone is to her and how sorry she is to be such a bother because she does not remember. It is so sad to see the frustration in her eyes. That’s what hurts the most.”

Kay is so right in her assessment. And this is from a gal who has chosen a profession which deals with these issues on a daily basis. Not long ago Kay told me that she gains a great amount of satisfaction from her work because she knows she is helping people. She believes showing respect and kindness to those who need her assistance is one of the requirements of her job. Kay is a rare breed and one I am so very fortunate to know.

Kay did reassure me that as my mother continues her mental decline, she will be well taken care of at her facility. Kay said my mother is a sweetheart who brings a bit of sunshine into the lives of the staff and other residents, with her bright smile and warm greetings. And any failings she has with her mental abilities will not be an issue going forward. I can’t tell you how relieved I was to hear this news.

And even though I woke up that morning dreading the day, I survived and was reassured that my mother was doing as well as could be expected and most importantly, she would continue to be taken care of.

And at the end of the day, I received fantastic news on both a personal and professional level. So, I was able to lay my head on my pillow that night with a lighter heart. I knew no matter what the future holds for both my mother and I, we were going to be just fine.

And if it means I have to take a ride on an emotional roller coaster or two now and again…no worries. I will just hang on tight and rock on.

Wishing Life Away

When I first started my professional design career, I worked for an art director who was a crusty old salt with a pragmatic sense of humor. And in his studio there was one gal who was the chronic complainer. Most mornings she would waltz into the office with her hot coffee in hand, and announce she wished that day was over. My art director would always chuckle and respond, “Be careful you don’t wish your life away.”

I’ve crossed paths with this art director numerous times throughout my career, and each was a positive experience. He was the type of mentor who taught best by example. I learned to develop a thick skin in my profession. And I learned how important it was to take ownership of each project, no matter how tedious it may seem. I learned life is too precious to simply wish away and it was my decision to enjoy it. Or not.

So, yesterday when the two-day calendar alert went off on my cell phone, reminding me that my mother has a quarterly doctor’s appointment, I do admit to feeling a sense of dread. And apprehension. And I found myself wishing tomorrow was over. And no, my old art director would not have been proud of me at that moment.

I have been taking my mother for her medical appointments for quite a few years now. Long before she stopped driving. And until recently, they were pleasant excursions. We would have the chance for a cozy chat in the car, and sometimes even treat ourselves to a nice lunch.

What used to take a few hours out of my work day, now demands most of the day. I have to allocate at least an hour from the time I pull into a parking space at the front of the assisted living facility where she now lives until she is safely situated in my vehicle and we can hit the road. Because she will go to the bathroom at least a dozen times before leaving her room. And we can’t forget the minimum of 15 minutes it takes to go through each item in her purse to make sure she has everything. And the inevitable argument that will ensue from that exercise, which can typically take another 20 minutes.

Then there is the 15 minutes it will take to walk from her room to the lobby of the building. And another 10 minutes to sign her out, since we must have the chatty-cathy dialogue with the receptionist. Then add in the two hours of round-trip drive time to the doctor’s office. And the time we actually spend in the doctor’s office, which can vary from visit to visit. And the 45 minutes it will take once I bring her back to the assisted living facility to get her settled back into her room. And let’s not forget the hour it takes me to drive back and forth to her residence.

But it is not just a matter of time allocation. It is the emotional and mental fatigue that takes its toll. And no matter how well I gear up for the battle, I know I am losing the war. Not against my mother. But against the dementia.

So, I have come to the realization there are some days in my life that I will wish away. And it’s okay if I do. Simply because my mother is worth it.

Tightrope Tango

Lately I feel like I am walking a fine line with my elderly mother, trying to provide her with a peace of mind while still maintaining a sense of reality for her. I feel like I am jumping two steps forward then three steps back. Like I am dancing the tango with her, on a tightrope high up in the sky, without the luxury of a safety net, and trying not to look down.

My mother and I share many traits, most likely because of genetics. We are both intelligent and independent women, who instinctively lend a helping hand to those who need one. While I take ownership of my independent spirit, I attribute my intelligence to the luck of the draw within my gene pool.

However, there are many areas where my mother and I are polar opposites. For instance, I am an outdoor gal at heart. I can go into withdrawal if I am cooped up inside for any length of time. For my mother, her idea of a picnic is to sit in the dining room with a table dressed with red-checkered linens and look out the window.

It is our similarities and our differences that has made for a unique partnership. Because at the core of our relationship is a primal love between mother and daughter, and the friendship we have developed over the years.

As my mother’s dementia has continued to blossom, our relationship has drastically altered. Yes, my responsibilities have increased. But now I am finding even my casual conversations with her are more chatty-cathy in nature. I share stories of the antics of my two canine companions. Fortunately, they are lively little buggers, so I have plenty of ammunition. Sometimes I share the latest news about her grandchildren, but only when she is having a good day since she no longer remembers who they are on a bad day.

I pick my battles with more care now. Does it really matter if she remembers how many sets of bed linens she has? Of course not. Does she need to understand that laundry has to be done. Yes, even if it means she has to allow me to do it for her.

My biggest challenge is that I never know which “Mom” I will encounter, whether it is during a phone call or a personal visit. Will it be the gal with the dazzling blue eyes and bright smile, or the gal who is agitated over where her 20-year-old winter boots are? And since the version of “Mom” can change within a heartbeat, I am never sure if she is truly listening to me and understanding the information I am sharing.

I know the situation will only get worse, not better. I get that. But somewhere along the way, I feel as if I have lost not only my mother, but my friend. It is like she is hidden behind a thick fog and only comes out to play when the sun is shining and the birds are singing.

So, I have no other choice but to continue to tango on my tightrope, and not look down. And hopefully not fall off.