I started this blog more than four years ago. It was a way for me to share the experiences of living with and caring for my mother, Marion, who was suffering with Alzheimer’s. The purpose was a bit unplanned and sometimes complicated. I hoped to honor the mother I knew in the places where I found she still existed in her everyday life. To share a common experience with those who could identify with my circumstances and maybe help them (and me), to not feel isolated or alone in their process. But it became most beneficial to me as a place I could go to express the joys and sorrows I shared with my mother, the frustrations of dealing with such a devastating disease and most surprisingly, to serve as an avenue of my expression of wonder.

A wonder, that after all that was lost to my mother, my family and to me, through all of this, we could still find happiness in what my mother continued to understand, enjoy and experience in her mind. A wonder that although her brilliance was diminished, enough still shone through to give mom a life that had meaning, experienced love, created laughter, enjoyed music and made song. A life that if not planned, was at least one that could find joy in the simplest moments and most unexpected of places.

It was a wonder that through her disease, mom managed happiness, and expressed it daily with her love and good humor. Moms happiness was shared by the people around her, old and new alike, who experienced her radiance. It was a wonder to me, who was sure all that was lost could never be replaced, yet was proven wrong by this woman who made me laugh, gave me hope and looked at me with eyes full of a mothers love, even when she could not remember my name.

All these years later, after writing of all the sorrows, anger and frustrations, it will be the joy and the wonder that will be my final memories of my moments with Marion. Now that my mother has passed and her spirit and soul are free from disease and in the stars of the universe, I am left in amazement, at the laughter, the smiles and the happiness she continued to share with everyone she touched, until the final days of her life.

It was the greatest honor to have the mother that was given to me. I will forever carry her in my heart and find comfort in the memory of mom’s laughter, her smile and her song. Each day, when the sun sets and the stars begin to shine, I will look up with wonder. A wonder that was born in Marion, who never let disease diminish her brilliance and showed me that happiness is not a state of mind, but a way of living. That like the stars, happiness can be brightest in the darkest of times.

My mother made life wonderful …… and I will miss her all the days of mine.

Thanksgiving and Christmas holidays have always been a mixed blessing in my life. The messaging that surrounds me at this time of year make it impossible to not feel all that makes me grateful. Although I make it a practice to give thanks throughout the year, I especially get caught up, like most of us do, in the season of love and giving.

But every season it seems I am also prone to a bit of melancholy. As the celebrations wind down the year I just lived and ring in the next one, that I always imagine full of hope and promise, I inevitably feel a loss or a hole in my life. So comes the mixture of happy and sad, grateful and yearning. It is as if all that brings me joy cannot be honored without a reminder of all that is missing.

As I celebrate still having my mother in my life, I am missing my father more than in recent memory. He passed away over seven years ago and yet it is this year that I felt his absence the most. He is the missing piece in a year that makes me feel so grateful.

This year I moved back to Coronado, where he and my mother met and got married, where both my sets of grandparents lived for well over 40 years. Because my mothers Alzheimer’s has taken her so far from me, I am longing for my dad to talk with about their childhood here and the subsequent memories we all made in Coronado together.

I wish dad were here to talk about his lobster diving, his years as a beach lifeguard, his learning to scuba dive from the frogmen at the Navy base. I wish dad were here to laugh with me about the cherry bombs he bought in Mexico and would set off on the street with us on New Years Eve and the flare guns he would shoot into the air as my mother would yell at him to stop. I wish dad were here to fill in all the blanks that mom no longer remembers and to share in the memories that she does.

In a year that I have more than I could ever have believe to be grateful for, I am missing my parents, one passed and one lost in her mind, more than I could ever have imagined. Wishful thinking I know, but what I would give just to have a few moments with both my parents to reminisce about the love and joy we all shared here together. That would be a truly magical holiday!

I woke up today in a funk. I was a bit surprised by the melancholy, as it was my birthday weekend and I received so much love, kind well wishes and shared equally as much laughter with friends throughout the days. So waking up in a place of anything but gratitude gave me pause.

To be fair, I rarely give myself permission to spend much time in a universe of half empty as opposed to half full. So giving myself permission for a morning to reflect and process why I got there was, I believed, as healthy a response as I could manage.

After a morning of reflection, I found to wax the philosophical on how I got into my funk, the justification for the wrongs and the whys that led me down the path, are irrelevant. I am not espousing a callousness to reason or a denial of permission to just be angry, or sad. But I realized that it is a part of the human condition to wonder, to expect more and to challenge what we could have done to make something different. To ask the why and ponder the purpose of the circumstances of disappointments.

The myriad of blessing that we experience are always counter balanced by our challenges, our disappointments and our personal failures. It is the quintessential stereotype, the ying and the yang. How would a blessing be appreciated if a loss were not our backdrop? We can’t experience a high without ever knowing a low. Otherwise there is no perspective.

Looking for a break from the mental gymnastics and trying to create a release, I decided to drive down to pick up my mom and bring her home for an early lunch and to watch some football on TV together. My mother often makes me laugh and smile and brings perspective to my day. However, on this day, reason may have been on vacation with that choice for distraction!

Time with mom turned into the culmination of a really bad morning, or more accurately, a shit show. Mom was happy to see me and grateful to be with me at the house. But as if she was tuned into my energy, she started to get more anxious and insistent as the hours wore on. She asked where my Dad was, where we were, was I married, what place were we in, did her husband know where she was, why was she here, who was I and on and on and on.

I could feel my patience being stretched and I was angry at myself for created a situation I could not control to make me feel better. It is always a crap shoot when I spend time with my mother, as she can be trying one day and a joy the next. Her brain has no capacity to know how to choose the difference. But I was angry at myself for looking for comfort in spending time with my mom. I knew a habit of a lifetime, to call or spend time with my mother, could no longer be depended upon. I was disappointed in myself that I was losing patience when it was an outcome that should have been expected.

So after lunch I gathered her up and off we went to drive back to her care home. I planned a stop along the way to buy her a milk shake to make up for the anxiousness of her morning. As we sat in the drive though, waiting for her order, I started to cry. I guess we finally do when we hit the tipping point.

Mine was brought on from the realization that in my darkest hours, no matter what I do, I will never get back the mother on whom I could rely, to make everything OK. I will never have her wisdom, her cheerful advice or her understanding. I was once again reminded that the tables have turned and for the rest of my life our roles are irrevocable reversed.

I turned my head away from my mother as we sat in my truck in the drive through line, as I did not want her to be upset by seeing me in distress. As tears streamed down my face I heard my mother ask, “Do I have any lipstick on?” I turned to look over at her and saw she was intently peering into the passenger side mirror. I answered, “No mom you don’t, but we can put some on when we get back to your house.” Mom continued to stare into the mirror, then touched the short bob haircut on her head, turned to me and suddenly exclaimed “Look at me!” she said with a look of disgust,”I look like a MAN!”

I laughed so hard that she turned from sour to sunny and joined in with me. After we stopped she said with a questioning look, “Well I guess I will have to stay this way for awhile?” I assured her that her lipstick was waiting for her in her bedroom back at her house. I paid for the milk shake, handed it to mom, she took a sip, looked at me and, as she does every single time I buy her one, said “This is the best thing I have ever had!”

And I realized that maybe, those tables haven’t been turned at all. But that now each of us are just sitting in a different seat. The view does look different, but gratefully, my mom can still make me laugh and feel better, even in my darkest hours.

Working with the elderly, in pursuit of finding them the perfect assisted living or board and care home, inevitably brings you face to face with the topic of your clients dying. At times it is a discussion in general terms of what their life could look like, when it is their turn to exit this planet(or so we suppose) and helping them find a pleasant place to live out what we hope to be a comfortable life. But often, it is with a client who is on hospice, and so gently our conversation turns to the next few weeks or months possibly being their last.

These conversations can be in person with the client themselves, but most typically for us, it is with the family who is managing the care and working to find the best solutions for a loved ones final days. This posse of the well intended can range from a sole family member to the whole clan. In each case it is rewarding to be part of a care team who is working together to offer an end of life experience that brings comfort and peace.

So it was with surprise this last week when I had not one but two clients, both in the late stages of their illness, be of clear cognition and soundness of mind, to be the primary person with whom I was to speak with about their impending death, and as a result, how we could help them find a place to live where they would be well cared for until they passed.

The contrast between these two clients could not have been greater. The first was a woman who had end stage heart disease. She had lived the past eighteen years of her life in hotel rooms for the indigent. We met her at the hospital and with only months to live, she had no family or friends left to advocate on her behalf. In our conversation she was reluctant but grateful for the help. She was sad not to be going back to her hotel, but we assured her the care would be good at her new board and care home.

Our second client was a gentleman I spent about an hour and half getting to know at the Skilled Nursing Facility he was in, recovering from a fall. He has end stage metastatic cancer and his wife, whom he cared for during the last fifteen years of her life, had passed almost nine years ago. He also had no family or friends at his side but had means, and so was lucky enough to have a lovely woman as his fiduciary, and an attorney, who would advocate and work with me on his behalf. He asked me to find him a home with outdoor space where he can sit and read and a quiet place to die.

After each meeting with both of these clients, I immediately thought of my mother. I was struck by the contrast of where she is in her life with that of my two clients. Here she is in a board and care home, with no real cognitive ability to recognize where she is and sometimes who she is, but the majority of the time she is happy. From on minute to the next she cannot remember if her husband is dead or alive, if she has children or my name when I stop in to visit. Yet in general I can say she smiles and laughs most of the time and is pleasant with her caregivers and loving to me.

I have spent the past thirteen years agonizing over her slow decline, missing her and her memories and wishing for nothing more than for mom to just have a clear mind. But this week I found myself grateful for all that she has and not what was missing. That my mother has friends and family who write and send pictures, come to town and visit, even when they know she will only experience their love and attention in the moment. Grateful that I am able to see her almost daily and that we can laugh and I can enjoy watching her expressions as she drinks a chocolate shake and then says to me each and every time, “I think this is the best thing I have ever had!”

The contrast between a life that ends in solitude and one that is surrounded by those you love is not a scenario that I approach with judgement. Some people who die alone are a victim of circumstance, others have created that life by design.
For my mother, hers is a consequence of a life lived with kindness, humor, a positive attitude and with love. Even in what should be her darkest hour it shines through and I am grateful one day her life will end with that reflection of who she is all around her. I take comfort in knowing because of the life she created, she will never be alone.

Moving my mother from a small assisted living facility to an even smaller board and care home has turned out to be a very good decision. Mom seems more relaxed and calm in her new environment. I was hoping for that result, as often a smaller more confined environment provides dementia sufferers an easier world to navigate. In her new house, it allows mom to find her bedroom by herself and the backyard sitting area, where mom loves to lounge on her chaise and bake in the sun. She seems more relaxed and comfortable.

As a result, most days she is all smiles when she sees me and that was the case yesterday morning when I stopped to visit her on my way to meet a client. She held my hand as we walked to her room and she kept squeezing it and saying she was so glad to see me again! I never tell mom I had just seen her the previous day, but instead agree that it is great to be with her too.

While we sat in her room and listened to an old country music station, mom pointed to a picture of herself and my dad on the wall and asked over and over who those two people were. I reminded mom it was a picture of her and my father, her husband Pat, when they were younger. She would smile and say, “Oh wow, we were good looking!” and then we would laugh.

It was cute but tiring, after the fifth time of this looped conversation, so I pointed to the four baby pictures of her children on the adjacent wall and said “And look, there are baby pictures of all your children”. As predicted she smiled and commented on how cute they all were and then zeroed in on the one of me and asked, “Who is that darling baby there?” Being pathetically pleased that my photograph was singled out for extra special attention, I replied, “That is me mom! Your daughter Monica, your favorite!”

Now I should pause to point out that growing up my siblings and I did not have competition for attention from either my mom or my dad. I feel confident to speak for them when I say I think we all felt equally loved and considered. The remarks about being the favorite really only started with my mother and her dementia. Because my mom is easy to laughter, it is a way to playfully tease her and see where her cognition is that day, to see if she gets the joke.

This tactic can famously fail as it did two weeks ago when I tried the same joke. She had asked me how Monica was doing because she hadn’t seen her in such a long time. I said, “Mom, I am Monica! I am your favorite daughter, remember?” She looked straight at me and remarked, “Well if she wants to stay that way then maybe she should come see me sometime!”

It’s a wonder I didn’t learn my lesson that day, as when I tried the same tactic yesterday I flamed out spectacularly once again. When I replied to her question about the photograph of me with, “That is me mom! Your daughter Monica, your favorite!” she turned and looked at me for a long beat and then said dryly, “No, not really” and then we both laughed again.

Either she has a much better memory than I give her credit for or I need some new material!

I want to be a multi-millionaire. There, I said it. I think it everyday. Okay, maybe not everyday, but most days of my life. Most certainly when I buy lottery tickets I do try to manifest it. I ask the Universe to make me the mega winner so I will have a flood of money to make my dream come true.

At the risk of sounding greedy, I want to note that I said “dream” not the plural. I truly consider my life gifted. I have a loving relationship, a supportive and beautiful extended family, a posse of amazing friends, a job I love and my health. What more should a reasonable person want or need?

Well without hesitation my answer is clear and simple. My one dream, my biggest wish is to have my mother still living with me, in my home, with my being able to afford the cost of 24 hour care. It is only a wish and not a reality because for me, like thousands of other families, I am not a top 5% income earner who can make 24 hour care at home a reality.

This is not a statement of condemnation to compare the fortunes of the haves and have nots. It is not intended to be a “poor me” comment on how the world is not fair and pontification of how it should look different. I am simply giving a voice to the many who share my experience in the caring of a parent or loved one who have dementia.

Like many people I encounter in my work every day, ever since I was a young woman, I too promised my Mother I would care for her when she was old. I could have no idea that Alzheimer’s would take over our lives, not just emotionally but financially, and alter my ability to fulfill that promise in such a significant way. I had no clue the ramifications such a disease could have on our family.

The costs of caring for a family member with dementia, in most cases, far exceeds the financial plans that most families can put into place for their old age. To compound the issue, 24 hour care is almost always required for people suffering with dementia, to keep them safe. The monthly cost for licensed care in the home is between $15,000 to $18,000 a month. This reality forces most to choose memory care or board and care homes as a more affordable alternative.

Our family is in that boat of those who cannot afford such a significant expense to keep my mother in our home. So she lives in a board and care setting where she is safe and well cared for. Ironically, I make my living making these type of connections for other families in similar circumstances and I am grateful to be able to be of assistance.

But that gives me little comfort where my own mother is concerned. It was the greatest joy of my life when I was able to have her in my home and we could manage her care financially for two and one half years. But when her care needs got higher and we could no longer meet her needs without hiring more help, it became untenable. So we had to make the move to a memory care outside of our home.

So days like today are my new normal, for almost a year now. I picked my mom up to bring her to my house for an early dinner. This occasion was to celebrate Easter with family. When I arrived, she was all smiles and so happy to see me. We drove to my house where we spent several relaxing hours before it is time to take her back to her place. I dropped her off with therapeutic lies of where she is (her new house)and when I will be be back (in a few hours), knowing she will remember neither explanation, or that I was even there, five minutes after I leave. Yet every time I walk away, I feel the mixed emotion of feeling guilty for not being able to keep her with me and relief at knowing she is cared for in a safe environment.

But what never changes is my feeling of failure. I feel I failed at not being so wealthy that I could afford to have my mother with me at home. I wish I had invented a crucial widget, written a best selling novel or coded an indispensable app that is on every cell phone. Anything that would have given me the resources to have her with me at home until the end of her days.

Because the truth is that commitment I made so many years ago, the one where I promised to care for my mom in her old age, was one I so wanted to honor. It goes without saying that my mother is one of my favorite humans. A woman I love today, even though she some days has no idea who I am to her, the same as I have since childhood. She is my touchstone, my laughter and my role model. I miss having her in our home, saying goodnight and good morning each day. I regret that others get the honor of caring for her when it was mine to give.

Intellectually I know I am caring for my mother the best I can, even though it was not as I had hoped or maybe in a way that either of us had planned. But my heart will forever regret that it was not my honor to be able to care for my mother, in my home, each and every day….. until the end.

My Mother has taken a recent decline. Typical of her disease she will slide, plateau for  awhile and then journey down again. With Alzheimer’s the brain is continually shrinking and the consequences cannot be predicted. Acting out behaviors can be a result, spacial disorientation, ambulation issues, and the list goes on and on. You never know when it will present, what will turn up or how it plays out.

This turn was rather sudden and it hit me this last week when I popped in to see mom in the late afternoon.  I was coming from a birthday party and wanted to take her a piece of the cake the host had so graciously wrapped for me to bring to her. I found Mom seated in the dining room next to a wall mirror. She was turned to look at herself and as I approached I realized she was having a lively conversation with her reflection.

I was stunned at how difficult it was for me to watch this exchange.  My first reaction was to smile at the humor of the situation but it was immediately followed by a sting of tears in my eyes.  It was all I could do not to cry right there as I watched my sweet mother chatting away at herself in the mirror as if it were the most natural conversation in the world. This was a new behavior and I was more than a bit taken aback by the scene before me.

As I approached, mom noticed my reflection and smiled and waved at me in the mirror.  I mustered up a smile and said, “Hi mom” and waved at our reflections. She continued to wave back and did not turn around to face me to have conversation but continued to talk to me in the mirror.  I finally bent down and kissed her on top of the head and only then did she turn around and smile and say “Oh there you are!”

As mom settled in to eat her cake she continued to look next to her into the mirror and offer her reflection a taste. Upon receiving no response from her “friend” she would wonder aloud, “well I guess she must have already had some” and would turn to look at me and offer me some cake as well.  Each time she did this I would thank her and tell her I already had my piece and so she would eat a bite of cake and then repeat the sequence with each bite in between.

Although a harmless development, to be confused by one’s own reflection, it has been accompanied by some acting our behaviors towards caregivers that now requires a new medication regime. Each step down brings a new plan of action, a new way to manage moms care and new complications in keeping her safe and cared for in her ever shrinking world.

I have been popping in a few times a day at different times to see how her new medication doses are playing out. Each time I do I find her at the mirror in conversation with her reflection. I don’t ask the staff if she seeks it out or if the caregivers put her there for a convenient distraction and built in entertainment for Mom. The new medication dose doesn’t seem to have changed Mom’s interest in her new friend in the mirror and it doesn’t matter as she seems to find her company pleasing to be around.

Yesterday I again stopped by in the late afternoon to see how mom was fairing and she was predictably next to the mirror having a yogurt and talking to her reflection. I sat down next to her and asked how it tasted. Mom answered it was quite good and right on cue offered me a bite. I declined her offer and then she turned to her reflection and held out her spoon and asked would she like to try a bite. When she waited for a long pause and got no response, mom rolled her eyes and mumbled to no one in particular, “Brother what a dope.”  I laugh out loud and Mom looked at me and laughed along with me, not really understanding why. It felt so good to finally laugh about the situation, even if it was at Mothers expense.

We laugh, we cry and we work towards making the best out of a bad situation. I hope this new behavior brings her comfort. I am glad mom has a new friend to keep her company, even if mom does think she is a bit dim from time to time!

 

 

 

 

 

One of the most reflective times of the year for me has become the holiday season, especially the month of December. Ever since my Dad passed away, some six years ago, it continues to be a month of reminders of all those we miss. It is compounded by my Mother having her birthday in December as well, but neither of these celebrations, Christmas or her birthday, can she remember or reminisce.

To add to the reflection, when someone has an illness like Alzheimer’s you always worry that every event, birthday or holiday will be the last you will have to share with them so you savor each accordingly.  Regardless of her no longer retaining memories I still do, so I am grateful that mom is still with me to love and to share in the festivities.

This year however played the cruelest of tricks by presenting me with a very bad cold just two days before Christmas.  Not only did I feel miserable but it kept me from celebrating with family and friends as I did not want to infect the masses.  But specifically it kept me from seeing my Mother. Her getting a cold can have very unexpected consequences as it can easily turn into something more serious in her fragile state. Not only that but I risked infecting the other residents at her memory care home, so I stayed away for most of the week.

I was so depressed at not having my Mother with me but my partner and some thoughtful angel friends jumped in to visit with her so I could know she wasn’t alone and she was loved during Christmas. Some would try to make me feel better by remarking, “Well she doesn’t know the difference anyway so don’t feel bad about it”. But that was small comfort and not really the point, as I fall back into the possibility that this could be our last Christmas together, at this late stage in her disease.

But I accepted the help and considerations of those who could, and stayed away. I cried and felt sorry for myself but did find solace in knowing she was being loved and cared about over the Holiday. I did remind myself that she really doesn’t even know my name half the time during our visits and won’t remember that I was not able to be there.  However that track seemed to make it worse as it brought to the forefront of my mind  all that she and I could no longer share. In the end I was just sad and miserable about the whole situation.

But brighter days always prevail and yesterday I was finally well enough to go see Mom. I was so excited to see her that I was grinning from ear to ear when I walked to the front door of her memory care home just as she was exiting with her caregiver Lety to go for an outing. I called out, “Hey Mom how are you?  I am so happy to see you!” Mom smiled and put her arms wide and said, “There she is” as she approached me for a hug. She gave me a kiss on the cheek and exclaimed, “Where have you been? I haven’t seen you for awhile.”

The look of surprise on my face must have been noticeable because Lety started laughing as I acknowledged to mom that yes I had to stay because of a cold. We sat together on the front porch bench as mom held my hand and asked me all the things a mother would of a child who was under the weather. And suddenly, for the first time in years, I felt a sense of normalcy.

I did not allow my mind to start questioning whether mom really knew I hadn’t been around for a week or had any concept of us missing Christmas together. I just appreciated the blessing of still having my mother in my life and the unexpected feeling that she had created a memory around me. That she really had felt my absence as we sat together chatting, smiling and happy that we finally got to see each other again.

It seems unremarkable I know to most, but I could not have asked for a better gift during this holiday season. I was so grateful to have been given a tiny glimpse back to a time when my mom and I lived apart and would be excited to finally see each other again after a long absence. If only for a few minutes I felt like I had my mother back. More beautiful was the realization that what I thought was one of the worst Christmases in recent memory turned out to give me the gift of one of my favorite moments of the year.

Now that is what I call a HAPPY HOLIDAY!

I remember when my mom first started having profound memory loss. Mom refused to acknowledge that she had an abnormal deficit. When we approached her on the topic, regardless how gently it was presented, mom would become angry.  She  insisted everyone had some memory issues as they grew older and hers was no different than any of her friends of similar age.  Because she rarely pushed back about anything, our family went along with her denial to keep the peace.

I have previously written about what a disservice we did to her and our family by allowing her to live in that state of denial.  In the end it complicated matters as we moved froward in the process, from planning for the type of care she may one day need to making sure her fiances could support that care. Like most families we addressed it as it came to pass and winged it the best we could with the resources we had available.

In hindsight, I am profoundly grateful for the limited planning my parents did prior to mothers memory loss, which included having long term care insurance. I am sure, like most people, they believed it would be enough to care for them, that when they pooled all their assets together it would give them a comfortable life, were either of them to need care. But like most people they had no idea the profound affect that having a disease like Alzheimer’s can have on a families finances.

I work with families every week in the same situation as mine. They find themselves with a family member who needs 24 hour care because of a memory problem.  Their greatest hope is to be able to provide that care at home until they are faced with the devastating news that Medicare, health insurance, etc., do not cover any of those expenses. It is all private pay and 24 hour care in your own home runs between $15,000 to $18,000 per month.

Even the most savvy financial planners rarely will have earned the income throughout their lifetime to be able save that kind of money, to provide 24 hour care at home. Those that did rarely can sustain those expenses month in and month out for a period of many years.  You would  have to be in the top five percent of income earners to be able to sustain the monthly expense that it takes to pay for 24-hour care at home.  It truly is a luxury for the very wealthy.

So the majority of families, like mine did, piece together the care with some paid help, but the lions share done by family. We move in with parents, have parents move in with us and every incarnation in between until families are forced through physical and financial exhaustion to place a loved one in a memory care home.

As I do this for a living, help place seniors into assisted living and board and care homes, I can tell you that rare is the moment that the families are happy about this day.  It is hard to see someone leave a home or a community they have loved for 40+ years and move into a home full of strangers. Harder still when the senior has a mental capacity that makes it difficult to understand the change.

So not to sound like all is lost, most dementia patients do very well in their new memory care homes.  They get good professional care, socialization and a safe a secure environment. But they are still with strangers and living their end of life days among them. I never lose sight of the fact that were our countries priorities on social services different, did we in fact look to funding programs for the elderly rather than other wasteful government programs, we could provide a great many services for elderly people to be able to keep them in their homes with family.

To be clear, for some having a senior family member with dementia cared for outside of the home is their salvation.  It takes away the daily sadness of witnessing the decline, the hectic pace and stress of people coming and going and brings back a sense of “normal” to their everyday lives. I pass no judgement and actually completely understand why for some it is truly a blessing for memory care homes and facilities to be available to them as an alternative. Not so for me.

I miss having my mother in our home every day. I miss her laugh, her nonsensical conversations, how she loved the animals, her new found joy at watching golf on TV and mom’s peaceful face as she closed her eyes against the sun while lounging on the back deck. I miss the warmth and comfort it gave me caring for her. I am disappointed I could not keep the promise that I would care for her at home with me until the day she died. It breaks my heart every time I go to see her.

However, I am grateful that my parents at least put some plans in place so that my mother has means for care in a memory care facility. Although not enough to keep her at home, she is one of the lucky ones who can afford care at a facility.  I meet many families with no financial resources so paying for any type of help is out of the question, at home or in a facility.  They are dependent on family and friends to fill in the gaps where professional care is needed, but care they will never be able to afford.

I am humbled to be able to help families trying to find hope and solutions to care for their loved one with dementia.  It is a job I truly love.  But I will never be satisfied with the limitations most families face in finding their ideal care scenario. People should get to choose to move to a care community or stay at home, not by necessity but because it is their choice.

I look forward to day when we live in a country that makes our elders, their care and their comfort a topic of the highest priority. I hope for a day when services are available for every family and senior citizen, so they can make the best choice for themselves, not the only choice available.

I think it would be fair to say that families are the centerpiece of most peoples lives. Small or large, genetic or contrived, most humans rely on a collective of people that bring a purpose and depth to their lives that we call family. Fortunate are those of us who do not have to look outside of our immediate relatives to find the support, love and consideration that bring meaning to the word, family.

Being in that camp has always been for me a source of pride, for no matter our shortcomings and idiosyncrasies, my relatives have always been a loving and supportive base. I never find a moment in a day that I am not aware of the blessing I have that surrounds me. Imperfect we are, but the love and support is ever waiting and present and for that I am so grateful.

The central character in our branch of this very loving extended family has always been my mother. She ensured that we traveled to relatives for regular visits, made efforts for special occasions and nurtured the relationships that she and my Dad both felt were vital to keep a strong connection to our family. I took it for granted as a child that everyone had an identical life and a mother who built that inclusive foundation through effort and love.

Consequently it was a shock to me, as I left the nest and made my way into the world, to realize that not all families where so fortunate. Everyone didn’t have the caring family that surrounded me and a loving mother as a constant presence.  The result of that revelation has been an increased appreciation of just who my mother has been in my family. Of how her quiet, steady and loving presence was the bedrock of my support and the origin of the connection that made me feel part of a whole.

So it goes without saying that as I celebrated a milestone birthday this past month, even though I felt the love and support of my partner and extended family, that I missed the ability to share my birthday with my mother.  Yes I miss my Dad and of course I wish he were still here with us,  but the sad irony is that my mother still is. She is living life with me but no longer able to share it with much capacity as a result of her dementia. It became just another occasion around which we could not create new memories or even share the old.

I have always marked the milestone birthdays with a celebration and this one would be no different. Turning 60 years old for most people may be a birthday they would choose not to embrace. But for me each birthday marks a gift of life that I am fortunate to still live in good health, when so many others are not afforded that blessing. So I choose to celebrate.

At a time when I was so sad that I would do so without my mother and lamented about her inability to share my milestone birthday with me, good fortune intervened. My childhood friends, ten of them to be exact, decided to create a celebration weekend away to acknowledge our 60th birthdays. Renting a house on a lake, we looked at pictures, told stories, shared laughter and heartache. Our collective childhood memories of 48 years ago came rushing back with fondness and joy.

As I was missing my mother and wished I had her to share memories and celebrate a continued good life, in walked my reinforcements to fill in the gaps. It goes without saying the memories my friends shared were NOT the ones I experienced with my family, thank God! But the love, the history and the laughter was there all the same.

The cliche that family comes in all shapes and sizes was never more true than this last celebration. Although I am fortunate to have a devoted partner and relatives a plenty for love and support, my friends, old and new alike, continue to be a central part of my life. My matriarch, my mother, was sorely missed by me this birthday, even as she lives among us. But I am eternally grateful for the extension of love that is available to me year in and year out from my friends. I find my center through my connections to my family and am proud to count my friends to be among them.