Shoulda, Coulda, Woulda

My father called the phenomenon “Monday Morning Quarterbacking”, aka “If I knew then what I know now, I would have done things differently.” 

Thing is, I believe you make the best decisions you can with the information you have at the time. And you cannot regret the decisions you have made in the past, but you can learn from them. My mother taught me this valuable lesson. However, as I am able look back on the last ten-plus years without regret, I do admit to wishing I had altered the timeline of certain aspects of my mother’s care.

And the reason I am sharing with you now is the primary mission of this journal. I have learned so much from the people who have already walked the same road I am traveling now, and their advice has been invaluable. And while their situations may have been different, their experiences are hauntingly similar. So if my thoughts and ramblings can help someone else, I feel the need to share them.

Aspect 1: My mother lived a minimum of 150 miles and a maximum of over 1,000 miles from her family until she was 81 years young. She should have moved closer to family a few years earlier. Because by the time she was 78 years young, most of her friends had either passed away, moved away into assisted living or were living in a skilled nursing facility. She no longer had the caring support system she had enjoyed for so many years. Her friends were gone and her family was not close by. She was a people-person who found herself with no one to play with. She was alone.

Aspect 2: My mother did not stop driving until she was 88 years young. She should have stopped well before then. Her reflexes had slowed. Her sense of direction was failing. Her eyesight was not as strong. She was a ticking time bomb careening down the road in a dark-red four-door sedan begging for a tragedy to happen.

Aspect 3: My mother lived independently in her own apartment until she was 92 years young. She should have moved into assisted living before the age of 90. Because it would have been an easier transition for her. Because it would have removed the burden of her taking care of her finances, and preparing her meals, and taking her medications, and keeping her apartment clean. Which would have allowed her to focus on the activities she enjoyed. And give her a 24/7 support system in the bargain.

But I know why I chose my timeline. My mother is a fiercely independent woman. And highly intelligent. And I didn’t have the heart to deny her a lifestyle so integral to the person she is. I chose instead to dance with the devil of my mother living on her own for as long as possible. I thought I was doing her a favor and making her happy. I thought maybe, just maybe, she could stay independent until she drew her last breath. I thought I could keep taking one day at a time, thankful for another one passing without her hurting herself, or hurting someone else.

Thing is, she did get hurt. No, I am not talking about her falling and breaking a hip. Or running a red light and having a car accident, injuring herself or other travelers. But as her dementia kicked in…quietly yet quickly…and she was unable to mentally process what was happening to her, I watched her emotionally shrink before my eyes. As the arthritis in her hips and knees got progressively worse, making walking without assistance an impossible task, I watched her physically shrink before my eyes 

I should have pulled the trigger earlier. I could have made her daily life so much better so much sooner. I wish I would have known then what I know now.

So, my recommendation to you is don’t dance with the devil I did. Take a step back and look at your situation with a fresh perspective. Don’t put off what you know in your heart is the right thing to do simply because you think you are doing your loved one a huge favor. Or because you are afraid of fighting yet another battle in a war you don’t think you will win. 

Don’t wait. Not one more single heartbeat, not one more single hour, not one more single day.

Our New Playmate: Missy Dementia

As my mother’s short-term memory and her confusion in unfamiliar surroundings and situations started to kick into high gear, we both went through a transition period. Or rather I should say, multiple levels of transition.

She was trying to mentally process her memory loss and in an effort to compensate, she wrote everything down. Problem was she did not always understand the incomplete phrases she had scribbled down on her note pad. Or she couldn’t find one of her note pads. Or her notes featured nothing more than a date and a time and my name.

When I would treat her to lunch out at a restaurant, she would look at the menu as if it was written in a foreign language she did not read or speak. And when the waitress rattled off the specials of the day, she would put on her “polite mask” and try to appear interested. It was simply too much information coming at her in one session. So, she would compensate by asking me what I was having. Knowing this, I would make my choice for a selection I knew was something she liked. And always, always, always…made sure her favorite cheesecake was available for desert. After all, dementia or no dementia…cheesecake takes priority.

My transitions were more emotionally reactive in nature. As our verbal communications became more fractured and less consistent, logic and analytical thought no longer had a place to thrive. I had to learn how to go with the flow. To take each step in the process as part of the entire journey. Learn when to duck and when to take the punch. Flexibility and patience became my mantras.

Most importantly, I had to find method which allowed my mother to acknowledge and accept her failing mental and physical abilities, while still maintaining a sense of dignity and self-worth. And as importantly, I had to find a method which alleviated the ever-present feeling my head was going to explode.

It would have been easy for me to point a finger at my mother and proclaim she was the problem. But she wasn’t. She wasn’t trying to be difficult. She wasn’t trying to work on my worse nerve. She wasn’t doing it on purpose. It was not her personally. It was the dementia.

My mother has always said that she and I have an honest and open relationship. That we can talk to each other about anything. And for the most part she is right. And as the deadline for my mother to move into assisted living got closer, I saw her stress level rise. And with it, our communications continued to tank. So, I took the plunge.

I sat her down and said we needed to have a heart-to-heart. I told her we had always been honest with each other. And now more than ever, the honesty needed to be blunt. I told her she was moving into assisted living because the time had come when she needed help and could no longer live on her own. And that if it were up to just her and I, the move would be a breeze. Because we were independent and intelligent women. And we can do anything we set our minds to.

I told her our problem was we now had a new player in the game. And as I pointed to the empty chair across the room, I told her our new playmate’s name was Missy Dementia. And Missy Dementia was not our friend. She was nasty. And she had very sharp claws.

When I saw the relief in my mother’s face, quickly followed by a sparkle of humor in her eyes, I knew I had found the right solution. And as we continued through the process of preparing for the move, we did so with a fresh perspective and a new understanding. Of each other. Of the situation we now found ourselves in. My mother and I were no longer battling each other. Together, we were battling Missy Dementia.

When a difficult situation would arise, I would tell my mother that Missy Dementia was trying to spoil our game. And she embraced the concept so well, she would point at that chair and say “Missy Dementia, you go away now! We don’t have time for your nonsense today!” Then turn to me and grin.

When I shared my newfound discovery with our family doctor, explaining my thought process and the invention of our imaginary playmate, along with my mother’s positive response…he responded with enthusiasm. He told me it was a terrific idea. Brilliant. And one he planned on sharing, if I didn’t mind.

I told him I didn’t mind in the least. And I didn’t know much about being brilliant. It was simply a matter of mental self-preservation and emotional survival. For me. And for my mother.

The Ostrich

I had never heard the descriptive of “ostrich” applied to a person before. Until the day our family doctor used it to describe my older brother.

It was during a telephone conversation I had with “Doc” when we were discussing my mother’s rapidly-failing short-term memory and what I could expect going forward. From conversations Doc had with my mother during her routine quarterly checkups over the past few years, he was under the impression we were a close knit family. So it was not unreasonable for him to ask me if my brother could lend me a hand.

I explained to Doc that even though my brother lived over 1,000 miles away, I knew there were ways he could help. And that I had already asked him, but he had refused. Doc replied, “Ah. He is an ostrich then. With his head stuck in the sand. What he cannot see or hear does not exist.”

Doc said he sees it quite often in families with regard to the care of their elderly. Typically, one person rises to the occasion, while the rest of the family either ignores the situation or makes outrageous demands. He said in some larger families, there may be a few people who share the load. But most often than not, it is one family member who carries the entire burden.

In my family that person is me. At first, I was stunned when my brother told me he would not help me. I always thought we shared a special bond, a connection that could never be severed by anyone or anything. Yet he broke it with one single sentence in response to my plea for his support when he said “I can’t help you.”

And in that single heartbeat, I came to the shocking conclusion my brother no longer had my back. In the next heartbeat, I made the decision that I would always have his. Because when push comes to shove, I am his sister and my commitment to family is stronger than my dedication to self.

My brother is almost ten years older than I am. And while I have always been proud of his accomplishments in life, I never put him up on a pedestal. I liked him and enjoyed spending time with him. He was a best friend as well as my only sibling. I felt betrayed by his refusal. Hurt and angry. Then I got over it. I forgave him. And not for his sake. But for mine.

Because I know why he is an ostrich. I know how hard it is to watch the mother you love so dearly physically deteriorate as time passes by. I know the fear of hearing the phone ring late at night, thinking she has fallen or hurt herself. I know the heartbreak of seeing the confusion in her eyes when she is not understanding the information you are trying to share with her, no matter how many times or what methodology you use to explain it.

And when I say I forgave him, perhaps I should clarify by saying I forgave him…almost. Because I realize that my anger towards him acts as the fuel to my fire to keep going when the frustration and anxiety and stress of taking care of my mother becomes overwhelming. And while this may sound odd, I still keep a bit of that anger tucked away in my heart. A reserve for the tough days I know are yet to come.

No, I more than understand the desire to be an ostrich. What you cannot see or hear does not exist. I have my moments when I wish I could be one too.

Until I hear my mother’s laughter. Or see the twinkle in her bright blue eyes when we share the joy of a remembered experience. Or witness how her smile and happy hello to another person lights up their face as they respond in kind. And I know I have been given a gift which outweighs any sense of false security my brother has by sticking his head in the sand. I have been gifted the greatest of treasures…this time with my mother.

Badge of Honor

My mother is now 93-and-a-half years young, and for the past year has been living in an assisted living facility with a caring staff and a strong sense of community. She settled quickly into her new routine and has embraced her new lifestyle.

One of the greatest challenges she has faced in the last decade is the decline of her short term memory. I have watched her frustration evolve from annoyance to anger to a belligerent acceptance. Until recently, when her attitude has matured into a distinctly different approach.

I noticed it a few weeks ago on a recent visit with her. My husband and I will often take our two canine companions along with us to visit my mother when the weather is nice. There is a large veranda at her facility, with comfortable chairs for the residents to sit and enjoy being outside in a protected setting. Since pets are not allowed inside the building, my husband will walk the dogs around the grounds, while I go to my mother’s room and escort her to the veranda. She adores our dogs, as do many of the residents, so our visit becomes quite the event.

During our last visit, my mother introduced us to a resident who was making a fuss over our dogs. Her friend said with a smile, “Oh, honey. Very kind of you to introduce your family, but you know I won’t remember their names.” My mother laughed at her friend’s response and they continued to chat about their lack of memory at this stage in their lives.

As I listened to their banter, I realized they have become proud of both their mental and physical shortcomings. It’s as if they are wearing them like a badge of honor…an embroidered emblem sewn onto the shoulder of their blouses announcing to the world,  “Look here, folks! I have lived on this earth for so long that my memory and my body no longer work so good! And you know what? It doesn’t matter a bit because I am still alive and kicking!”

In that moment I realized how important it has been for my mother to be around other people on a daily basis. And not just those who are of her generation. She enjoys the companionship of her caregivers along with her newfound friends. She now understands she is not alone in battling her memory loss. She is not losing her intelligence and dumbing-down. And she has rediscovered her sense of humor.  And by doing so, has regained a sense of self-worth.

As I share this journey with my mother at this stage in her life, I am appreciative of all she has taught me. Right from wrong. How to show compassion and have patience. How to be independent and to remain confident in who you are.

And she is still teaching me. How to age with grace and dignity. How to take each challenge as it comes. And most importantly, how vital it is to keep your sense of humor through it all.

My Journey Begins

When my mother turned 81 years young, I was elected by my family to become her primary caregiver. I am still not exactly sure how that happened. I must have missed that family meeting.

The decision was not made because of one particular “event”. My mother did not fall and break her hip, have a stroke or get into a car accident. The decision was made simply because it was time for her to move closer to me, so I could take care of her.

At the time, my mother lived 150 miles away from me in another state, where she had been enjoying an independent and happy life. She had her circle of friends, took classes at the local community college and regularly baked cookies for her family doctor, hair stylist and computer class teacher. My older brother and his wife lived over 1,000 miles away and were heading for early retirement with long-awaited travel plans on the horizon.

Logic indicated this was the best move to make, at the best time to make it and I was the best candidate. But logic alone could not have prepared me for what lay ahead.

My mother is an intelligent, independent and warm-hearted person. If you were behind her in the checkout line at the grocery store, she would most likely strike up a lively conversation with you. You would walk out of the store thinking you had just met the nicest of gals.

On the flip side, intelligence can manifest into a refusal to believe anyone else could possibly be right. Independence can become a stubborn streak more expansive than our entire universe. And a warm heart can be an easy mark for a con artist.

As I started to face the challenges of being my mother’s sole caregiver, I found my lifestyle drastically impacted. Both my husband and I work full time, have our own home and live an active life. As my mother’s needs began to take priority, our lives were no longer our own. And even though I like to believe I am made of some pretty stern stuff…as more time passed, my emotional, mental and physical health were being compromised. So, I asked my brother for help. To my amazement, I discovered none would be forthcoming. He chose to bail not only on my mother, but on me. I was left to figure it all out on my own.

Throughout the past decade, I have been responsible for finding my mother places to live, both independently and most recently, with assistance. Packing her belongings, physically moving her then helping her to get settled. As time continued to pass, I took over many routine tasks when she could no longer do them for herself.  In addition to selling her car and finding a way for her to get around when she could no longer drive…to fixing her computer when she would right-click and fill up the entire screen with alias icons causing it to crash. This is mild in comparison to the con artist masquerading as a friendly neighbor who drained most of my mother’s life savings before I discovered what was happening. Add in the gradual decrease in her short-term memory and her confusion in unfamiliar surroundings which caused the simplest of our communications to become increasingly difficult.

I now find myself walking the fine line between taking one day at a time and being prepared for anything the future may hold. And my story is not unusual. Many people find themselves in similar situations. The one thing we all have in common is that we want our loved ones to be safe, healthy and happy.

If it weren’t for the unconditional support of my husband and one of my oldest and dearest friends, I would be in a much nastier place right now. My husband’s mother is fast approaching the time when she will need our help, so our journey is far from coming to an end. And until recently, my friend was in the same situation with her mother as I am with mine right now. And so are the people in her circle of friends. Being able to talk, share experiences and information has been a life-saver.

And that is the reason why this journal was created. I wanted a place where any of us could go and share…safely and without judgement. Sometimes we are seeking answers and other times we just need to vent.

So, that is my story and I am sticking to it. And I hope you will share your story. Because knowing we are not alone can become our greatest comfort. And inspire us to keep putting one foot in front of the other.