Being a Caretaker During the Holidays

Posted on January 2, 2017 by Lynn Brophy

It’s been awhile since I’ve last posted, probably because of my schedule due to lack of free time and a bit of procrastination all wrapped up into one. Losing my mother to dementia, Alzheimer’s disease is something that I am finding that you never really get over, never really get past. After years of caretaking a parent, it’s always lingering in the background whether you are speaking out loud about it or not. You carry on with your life, moving forward, but there is always that one thing that is hanging around in your head regardless if you are conscious of it or not. Whether you are a caretaker of a parent with Alzheimer’s or just dealing with a parent living in a nursing home suffering with the disease, the end result is always the same. Alzheimer’s disease takes no prisoners, no hostages…it wants the whole enchilada, and it always wins, with the people left behind feeling an unexpected void.

It’s been a little over 2 years since my mother got her wings, with this past Christmas and New Year being the 3rd. You’d think I would have gotten used to it by now, but I’m not and I seriously doubt that people ever get over it. Caretakers and those left behind deal with the road never traveled. Every day is a new day, and every memory is a welcomed one. I grew up in a broken home and we had no real holiday traditions to speak of, but while she lived in my house when care taking her, she got great pleasure in helping me decorate the Christmas tree. Because of her disease, decorating made her childlike and filled with joy. Because of that brief connection during the holidays, I relive it every year when decorating the tree. I’m happy that it doesn’t depress me, but instead it adds to the joy of the season and has become a good memory. For some people the holidays become a very depressing time because they can’t accept the void that they are left with after their loved ones passes. I am finding that trying to hang onto the good memories is the way to go… and also for your own well-being able in moving forward.

Photos: Top: Mom, (left) with big sister Lillian in 1942, left: Mom & me years ago, below: Mom (middle) with our neighbors and friends Eleonore & Gene on her second to last Christmas Eve.

Being a caretaker is probably one of the hardest things that I have ever taken on. I used to think that parenting was the hardest job in the world, but for me, care taking proved to be the most difficult. You are literally changing roles with your parent…the same parent who you looked to for guidance and support during your whole life, is now your child. Now you’re in the position where they are’t capable of making the simplest of decisions, caring for themselves, paying bills, driving, etc. They become the child and you become their parent, which can be totally humiliating for them and overwhelming for you, especially since they do know that their brain is failing. They are very much aware that something is happening to them but they are hard pressed to understand why it is happening or how it is happening which creates a major dilemma for them. Some families adjust better than others, yet some can have years of turbulence in the house since it is the nature of the disease to create chaos in families. Having gone through both sides of this scenario, I can understand how each side feels, and I know it’s not easy.

While in the middle of the situation, we have no idea how we will react once our loved one has passed because in reality, we are in the middle of a war with no end in sight. We did the best we could while going through it, sometimes acing it and other times bombing at our caretaker role, but I now know that it is perfectly normal. What I didn’t expect however, was how I would feel and react after being a caretaker, after the curtain came down. I now know that afterwards, it’s a completely new journey and none of us can anticipate what that journey will be because it will be different for each person. I’m well over 2 years into my journey and I am still not exactly sure what I am doing or how I feel or even how I should proceed. Basically, it tends to be a one day at a time thing and you do a lot of winging it.

Happy New Year!

For me holidays are mostly melancholy with this one being no different. So with this New Year, 2017, I am hoping that I continue to progress on my path moving forward and continue to have good memories during the holidays. I wish all the caretakers dealing with this horrendous disease, strength, patience and peace for the upcoming new year as it will more than likely be a challenging one in many ways.

Mother-Daughter Reflections On This Mothers Day

Posted on May 8, 2016 by Lynn Brophy

Mother’s Day has been sneaking up on me little by little this year. I mean, I think about my mother just about everyday but lately thoughts of our relationship throughout my lifetime have been presenting themselves in different ways. Even though, and probably in spite of Alzheimer’s disease, I considered the last years of her life a coming to terms time for us. We were able to put aside the past and accept each other for who we each were without fault. That was monumental.

As far back as I can remember in childhood, my mother was not like other mothers. First of all she worked a lot and although I didn’t know it at the time, a career is what she had aspired for herself since she was a child. It wasn’t easy for her, because at some point during her early teenage years, she developed a disorder, which would go on to cripple her life for the rest of her days. OCD is a disorder that completely changes the way a person thinks and perceives things and in turn with how they are able to react to the world around them. It can show it’s ugly head in many ways, but for my mother, OCD manifested itself with a fear of germs. She spent her life alienating herself from people, not touching them and also keeping herself from touching most things around her, both inside the house and out. She spent a lot of times washing and re-washing her hands, over and over and over again until she was raw, day after day, year after year. I believe that Howard Hughes had the same disorder.

With that being said, having me wasn’t exactly in her plan, nor did it make her life easier, but being a young, beautiful and vibrant woman, seemingly in love, she made the best of the situation. From everything I can see in our old family photos, she both welcomed and loved me after my birth. In the photographic trail that I have, early on it looked like a pretty normal family from the outside, although I’m sure that she was struggling with her problem with every minute. Of course, over time, her symptoms got worse and the marriage fell apart, leaving my mother to take me and leave home. I remember that I was about five years old. We went from apartment to apartment to Ozone Park where my grandparents lived to Jackson Heights through the years, and looking back, we very much lived separate lives under the same roof. It seemed normal to me because it was all that I knew.

Being younger, I really didn’t understand that we were different than most of the other families around. Once I got to about 5^th grade, I was well aware of the differences because I started to make friends and visit their houses after school while my mother was at work. I spent a lot of time at my friend’s homes because it felt very good, very right. In a sense though, I really didn’t know or understand why we were different because back then there was no name for OCD, I had no understanding of what was going on. We were living one day at a time, never thinking of the next day.

In reflection, what I know for sure, I am today the person I am as a result of the environment I grew up in. Although I consider myself to have turned out pretty good considering, with her goodness rubbing off on me, I find that I too am different than other people around me, but in a very different way than my mother. I of course, don’t have OCD, but I do have walls built around me, which was a learned behavior. I can be secretive and very much a loner, being very reclusive. I rarely feel comfortable socializing in crowds and don’t go out of my way to socialize. Not that I am antisocial, but I feel more comfortable by myself. I guess I’d say I am social on the inside, but not so much on the outside, although there are always exceptions.

Yes, I’d say that my mother’s OCD affliction affected me to some degree, but I don’t blame her in any way…she absolutely couldn’t help it and did the best that she could. I admire her for loving me the way that she did through all of her problems and bumps in the road, right till the end. Now, I understand her and why she was compelled to act the way she did and more over, I am learning everyday what behaviors that I have walked away with as a result. It’s taken me most of my adult life to understand why I am such a loner with such high walls. Actually, in hindsight, it was Alzheimer’s disease that brought closeness and understanding to a lifetime in our relationship.

My mother Eleanor Van Meter was a very strong woman who was dealt a bad hand in life, who still managed to deal with her issues on her own, support me, even if only by phone and still remain the classy lady that she was.

Happy Mother’s Day Mom!

Dementia and Another Reflective Easter Sunday

Posted on March 27, 2016 by Lynn Brophy

Easter Sunday and reflecting as we head into spring…I took care of my mother with dementia as her mother took care of her father with the same disease. It was the hardest thing that I’ve ever done. She died 2 years ago and not a day passes that I am not grateful to have taken care of her. It took 8 years of my life but I’m not sorry. Through the earlier years, we didn’t always have a great relationship, but in those 8 years while I was taking care of her, we were able to make our peace. I learned things about her that I had never known before which is a direct statement to who I am today.

I have often wondered why people with dementia are always looking and searching for their mother. It seems to be a common theme in the dementia – Alzheimer’s world. My mother was no different in that searching for her mother was a way of life around here. Well, since my mother died, I think of her everyday. It’s not an understandable train of thought until the day comes where we find ourselves parent-less. I’ve come to believe that we all face this common feeling once we lose our mother, or dominant parent. By dominant I mean, the parent who mostly raised you, right there in the trenches with you.

I belong to a generation of baby-boomers who find ourselves approaching old age, in the last third stretch of time in our lives. With that, we are facing the largest dementia – Alzheimer’s related population in history. Much has been written on the subject with little solution added to the conversation. My mother’s generation, and the generation before her, luckily came from roots where you take care of your family, and that meant in old age as well. My grandmother took care of her mother, her mother-in-law and even sister-in-law when they could no longer care for themselves and my mother was lucky enough to have me. But not all people of my generation are able to take care of sick and aging parents. In today’s world, we all have to work and earn a living. Even in a 2 person household, more than likely, both people will need to work in order to have a house and food on the table for their family. The past 2 generations had a very different life than people of today, not always, but usually it was the man who went to work and the woman would stay home to tend to the house and kids. It was a less complicated life than we face today and I am guessing that this is only the tip of the iceberg. We live in a very complicated, busy and turbulent world. Our children and grand children’s lives will be more complicated and busy that ours, which seems like a scary thought to me.

With all of that said, where does that leave the aging and sick baby-boomers who are coming of age everyday? A lot of us don’t have retirement savings because we are the transitional generation on the cusp of pension and a do-it-yourself retirement savings. And if you were lucky enough not to work while your kids were growing up, you are really finding yourself in a bad position right about now. Take it one step further, if you are a divorced woman, chances are that you have absolutely zero retirement savings because you need your paycheck to live. So what if you start developing this dreaded disease of dementia or Alzheimers? Your busy kids will probably not want or be able to take responsibility with their busy lives. Being a caretaker for people afflicted with this disease is a full time job and as we know, most of us must have a full time job to survive just to have a basic life. Do we all go into nursing homes, god forbid? Do we end up on social services? It’s a modern day dilemma plaguing the baby-boomer generation and their children.

Photos: Above (1): Eleanor Van Meter with her husband Dwight to the left and a friend of theirs to the right. This was the happiest time of her life. (2) Mom (Eleanor) at Rockefeller Center, where she worked posing for a photo. On the back of this photo she noted that she has no idea who the man is! Below (3): Lynn on Easter Sunday in Hicksville at 6 years old (that old car is scary).

All of these heavy thoughts on this Easter Sunday. Again, thinking of my own mother today since she got her wings two years ago. I can remember when I was a kid…Easter morning was usually at my maternal grandparents house. After church, it was the usual Easter basket with all the traditional Easter candy. Finding all the colored Easter eggs that were hidden around the house. They would always make me get dressed up in a Easter outfit with a hat, white ankle socks and patent leather shoes, a tomboy’s worst nightmare. Sometimes, my father would come to visit, bring goodies and we all would sit at the table eating a nice holiday dinner that my grandmother would cook for us. After dinner, all the adults would sit in the kitchen and talk for hours, usually politics and I would sneak down the hallway to watch them, even though I wasn’t the slightest bit interested. It was fun to watch them though.

There were a lot of good memories from back then, but I find this Easter to be a very reflective day. I’m guessing that this part of our lives is meant to be a reflective time and even more so, at my mother’s age when she was so seriously looking for her own mother as if to be on a mission when her memory failed her. It’s almost as if we go into a default mode when the brain starts malfunctioning. We are always searching for the good old days and the people who were in them.

Pondering Thoughts Post Alzheimer’s

Posted on January 31, 2016 by Lynn Brophy

It’s been awhile since I last posted. There’s been a lot of pondering, wondering and lamenting, going on over the past year and a half. Not sure if it’s just another stage of working through the grief process or if it’s just me in the “what’s next” portion of life after losing a parent to Alzheimer’s disease. I think that when a parent dies, the first year is focused on the event and the void of that person in your life, not to mention all the firsts…anniversaries, birthdays, etc. A lot of thought goes to “what could I have done differently” and “if only I did this or that” or “acted this way or that way. After that, for me at least, I am thinking a lot about what the next 20 years has in store for me.

Will my life follow a different path than that of my mother’s life or a similar path? Will her dreaded diseases and afflictions be passed onto me? If so, who will be the one to look out for my well being? Those are all tough questions and they come with tough realities. Everybody is different, rightfully so, and we are all on our own journey. What will be for one, will most likely be different for another. So then, why I wonder, am I so unsettled about all of this? It seems to be the natural course of life. Maybe it’s just the natural flow of things as we get older and facing mortality. Maybe I am feeling exactly what I am supposed to be feeling at this stage of my own journey. Maybe at this age, it’s normal to be more in touch with the universe and the processes of life. How do I know…when will I know, or is it all just a crap shoot? That is the question.

Photos: (1) Lynn, me apparently pondering life at 5 years old, with crayon in hand, (2) Mom, Dad, me, Grandparents, Uncle Raymond & Marion Corso, (3) Mom and Dad on a boat, (4) Ragamuffin Lynn, me, on a tree swing at summer camp.

I look back at old photos of my parents and of me when I was a kid along with other family members and it makes me feel good. Even though times were often rough back then, living in a broken home and being poor, I can look back and appreciate all the good that took place in those days as well. I can see it now very clearly now. All the times that I spent at my grandparents house, all the years that my mother had to work hard just to keep a roof over our heads and what it took to keep me fed, clothed and schooled, mostly on her own. She was getting $20 a month child support from my father who very often didn’t pay, but she was a strong lady and she made it work even with her OCD issues. It never even occurred to me back then how hard it must have been on her to have a such rowdy, tomboy daughter who managed to challenge her at every turn. The simplicity of life back then can’t compare to today’s world filled with technology, financial woes and eternal busy work leaving us no time to fully enjoy life in the now. Isn’t that what Ekhardt Tolle says in his book, The Power of Now?

Funny how we never really appreciate what we have, when we have it, in the now. It’s only when it’s gone, with no chance of returning, that we get it, really get it. Is that the same for everyone? Does everyone go through this insanity? I have to believe that we all do at some time or another, because in my opinion, we are so involved in the normalcy of life, the sameness, that a lot of times we don’t fully appreciate the moment we’re in this very minute. We need to get this or that done today, errands, busy work, just stuff in general, and in the end, it’s all insignificant stuff that we won’t even remember later on. I suppose that 20 years from now, I will be looking back at this time and at my health, hoping that I was able to fully appreciate having this blog, going to work and earning a paycheck, having a house and maintaining it, paying bills, being able to get through New York winters while fully appreciating how good that I really have it. Although I truly wish that I could afford to retire like the generations of yesterday, things could be a lot worse. I see how much worse when I watch the news every day. The world is a crazy place. Sadly, simplicity in daily life has long been lost in the past.

Moving forward though…what’s the answer, how do I proceed? Should I simply go with the flow and see where it takes me? Or should I try to work it out creatively, meaning to get involved in some of the creative projects that I have put off for lack of time, energy or inspiration? In the end, I suppose it’s my choice and my unique journey, so I’ll keep thinking, wondering and pondering until it leads me to where I am supposed to be. Hopefully, I’ll know that place when it comes or maybe it will be an unconscious awakening, but regardless I’ll have faith that I’m on the right path.

A Sad Reality at the Supermarket Last Weekend

Posted on December 14, 2015 by Lynn Brophy

This past weekend, I made a Sunday run to the local supermarket for a few last minute items before my work week began the following day. Nothing unusual, cheese for my salads, artisan bread for the slow cooker dinner I was making, etc. Matter of fact, I was annoyed with myself that I didn’t remember to pick these things up on Saturday when I normally do my food shopping. No matter, I get to the supermarket, park the car, go in and gather everything that I need, then scan the front of the store to see what register had the shortest line so that I could make a quick retreat.

I spotted the last register with only one older man who appeared to be checked out, so I got onto this line. I figured, wow, this will be fast, I got lucky today. So, with that, I put all my groceries onto the belt but nothing is happening, nobody is moving. The cashier is just standing there staring off into space as if she were bored stiff and the older man was struggling with his 10 plus bags on the end of the belt. I’m thinking…. what’s happening here, why is the cashier just standing there looking absolutely useless? I thought maybe there was a problem because literally, nobody was doing much of anything. After standing there for a few minutes and evaluating the situation, I realized that this poor man was standing at the counter, wearing red plaid flannel pajama bottoms, a winter coat, looking very pale and appeared to be winded. He tried to lift one of the bags and appeared to not have the physical strength to lift or put them in the cart. I look at the cashier and she’s just standing there uninterested and not in any way prepared to help him. He looked up at me and said I’m so sorry. By then, I understood exactly what was happening.

At that point, I stepped up and said, here, let me help you. He appeared relieved and moved over as I took charge. I noticed that the cashier had put everything in single plastic bags. Some of the items were heavy with pointed edges and there was no way he would be able to get them safely to his car without them ripping open spilling onto the ground. I looked at the obviously unconcerned cashier and told her with a stern voice to start double bagging all of his bags while I load them into his cart. She looked shocked that I would actually have the gall to instruct her to help but finally began moving at a snail’s pace, but it was very obvious that if I hadn’t stepped in, she was going to continue doing nothing. I finally got his bags into the cart, and I asked him, are you here by yourself? Do you want me to help you load these bags into your car? He said no…no, that’s okay, I’ll manage. Not wanting to further force myself onto him, I said okay and he thanked me for helping him. As he walks away, I see that he is walking very slowly and in my heart of hearts, I knew that he was struggling. But again, I didn’t want to push myself on him, so I stayed put.

Photos: Top: (1) silhouette of mom, Eleanor Van Meter, (2) Public domain image, (3) Mom at 86 years old, weeks before she passed.

Meanwhile, I get myself checked out feeling really disgusted with this cashier, wondering if I should see the manager about it, but decided to let it go…for now. Got to my car and put my bags into the back when I realized that I had forgotten a few things…so I locked the car and went back into the store. Upon checking out for the second time and getting back to my car, I was still thinking about the man. Surely, he didn’t load all of those bags into his car himself, but I didn’t see him in the parking lot. Perhaps someone helped him? After quickly scanning the lot, I didn’t see him, so I got into my car and started to leave the parking lot. When I approached the last aisle before exiting the lot, there he was in the closest parking space still trying to load his car. I had been in and out of this store twice and he was still not even halfway finished loading the bags into the back of his car.

Well, you know by now, that I had to stop my car, I wouldn’t sleep that night if I kept going…so I double parked…got out and again said, here, let me help you. I softly said to him, that he should think about coming to the supermarket with someone to help him and that it’s dangerous for him to come alone. He replied, I know, my wife usually comes with me but she is at home cooking right now. She wanted to come this time but I told her no. He volunteered the information that he had a triple bypass 3 months earlier and that he gets extremely tired when doing anything physical. It made total sense now. He then said, I can’t just sit like a vegetable and feel useless…I have to do something. It was then that I saw something in his eye, he was afraid of losing his independence, something that no older person should ever have to go through. It’s a matter of dignity. I finished loading his bags into the car, and he was repeatedly grateful for the help. He said God Bless you and Happy Holidays. I had hoped that he could get back to his place safely and rest himself.

A last minute errand for myself had turned into something that left me feeling both sad and happy. Sad because of his situation and in his realization that he’s not the man that he used to be and has become a man that is in line for losing his independence…and happy because I was there to help him. It was the first time since my mother passed away that I felt like I did something meaningful for someone else.

Now, what to do about this cashier? Should I let it go, should I speak with her manager or should I just say something directly to her next time I see her? What would you do? Seems to me that when I was a kid and working as a cashier in a supermarket, we were required to not only bag all of the items and put them in their little grocery cart, but also actually make change. These kids today are absolutely clueless about making change without the computer telling them what to do and what change to give the customer. What’s wrong with our world that a 16 or 17 year old girl couldn’t feel the compassion to move her behind to help this man? I really don’t get it…do you? Is that where our world is going?

Now that the baby boomers are retiring and aging in astonishing numbers, we are going to see more and more of this lack of concern from a portion of our youth. Alzheimer’s disease, dementia and other diseases are plaguing our elderly, leaving their children and family members to be their caretakers. My mother was lucky, she had me, but what about the ones who have nobody to take care of them? What about the ones who are struggling by themselves? What’s going to happen to them if something as simple as helping them load bags of groceries into a cart is too much trouble? Will there be a helping hand reaching out to them if needed? I know for a fact that there are many young people that would have stood up to the plate in a situation like this but sadly there are just as many who wouldn’t have. It was a discouraging thing to see but it’s the reality of today’s world.

The First Anniversary. Today is the Last of the Firsts

Posted on September 28, 2015 by Lynn Brophy

Today is the first anniversary since my mother, Eleanor Van Meter passed away from a combination of diseases including Dementia/Alzheimer’s, Parkinson’s and Leukemia. September 28, 2014 marked the beginning a year filled with firsts. The first Halloween, the first daylight savings time, the first Thanksgiving, Christmas, New Year’s Day, Mom’s birthday, Valentine’s Day, Easter, Memorial Day, Fourth of July, Labor Day, etc. I’m sitting here on September 28th, a year later in 2015, reflecting on what this year has meant to me.

I didn’t exactly know what to expect during the first year, but I can see that at least a year is needed to come to terms with a death of a parent. Because the year after a death will always be significant while dealing with of all the firsts, it’s probably the hardest year you will ever go through. The fact that it’s a parent, compounds the intensity even further. I don’t care if parent and child got along well, or didn’t get along well, if they were best friends or estranged or indifferent, the effects of losing a parent are unique, because your parents are the reason you are here on this earth. There’s never been a time since you were born that they haven’t been on this earth, until they pass away. Again, it doesn’t matter if you saw them everyday or once in a year, it’s a powerful event for the child/adult to process and come to terms with. For me, this past year was a time to create a new normal.

Photos: (1) above: Mom, young and full of hopes and dreams, (2) below: Mom (Eleanor) and big sister Lillian, (3) Mom and Lynn (me) in my room at her mother’s house. Contrary to this photo, dolls were not my thing, but it was a gift from my father….soooooo, (4) Mom, a few weeks before her death.

Mom had a combination of a good life and tragic, all rolled into one. When I look at her childhood photos, I see a happy, normal little blonde haired girl who obviously looked up to and adored her big sister Lillian. That feeling had reflected in our many talks over the years. As she matured into a young adult, she somehow started showing symptoms of what we now know to be Obsessive Compulsive Disorder. It was that disorder that was to become the tragic part of her life. She had said that she was sick a lot when she was young, causing her to miss a lot of school events that were important to her. She thought a possible reason for the OCD was in her determination to avoid germs at any cost. She also once mentioned that a bout of strep throat could have been the cause of the disorder, but I suspect we’ll never know the real reason. What I do know, is that this disorder had caused her 2 marriages and a lot of lost joy in life that could have been. OCD held her hostage in a solitary world which finally left her communicating through phone conversations as she got older.

During her working years, which was also something that she aspired to do since childhood, was a success. She had prestigious positions over the years and was able to hide her OCD while at work. For that, I am grateful, because working in Manhattan was probably her biggest childhood dream fulfilled. Through her working years, she met Dwight Van Meter, her second husband and the love of her life. He was 20 years older than her but it was so obvious that it was a relationship that was made in heaven. He passed away in 1985 and she spend the rest of her life mourning him. Strangely, they were married on September 28th, the same date that she died. Coincidence? I don’t think so. They are together again.

My mother was a really good, kind and decent person throughout her life. She raised me the best she could with the challenges that she faced everyday, and with the help of her mother, my grandmother, I became the person that I am today. I can say that I was quite a handful, but in the end, it all worked out well. She worked a lot and I was very much on my own, but it was through her and her mother’s family traditions and morals, that I was able to pull through in tact.

By the time she came to live with me all those years later, she was quite a bit older, very frail, set in her ways and showing the signs of dementia. I didn’t realize at first but after awhile, it became obvious…and even then I didn’t know what was down the road. Dementia/Alzheimer’s disease is an awful thief in the night, stealing your memories and dignity without a concern of the chaos it causes within the brain of the person it’s destroying. While she was here for over the course of 6 years, we were able to have nice conversations, dinners together, watch tv shows, get-togethers with neighbors her age, go shopping…in short, we were able to resolve and make peace with each other in the last years of her life. Not that it all was good times with the challenges of the progression of the dementia, but the good is what I choose to remember.

On this day, September 28th, 2014, things were happening all over the world:

George Clooney and Amal Alamuddin married in Venice.
Volcano in Japan erupted with 30 feared dead.
Baseball season comes to an end.
Kenyan man Dennis Kimetto sets marathon world record.
Air France Pilots end strike after 14 days.
Brigitte Bardot turns 80. Ben E. King and Hilary Duff have birthdays.
Eleanor Van Meter, my mother, got her wings.

Contemplating Life After Being A Caretaker

Posted on August 10, 2015 by Lynn Brophy

It’s been almost 11 months since I lost my mother, Eleanor Van Meter to Dementia, Alzheimer’s Disease and out of absolutely nowhere, ambushed by Leukemia which ultimately took her in the end. In the aftermath, today I find myself contemplating life. It’s not that I’ve never thought about it before, but now, it feels much more complex than when I was younger. Maybe because now, for the first time, I am on this earth with no parents. It’s a new world knowing that the people who created you, are for the first time in your life, not there anymore. Years ago, I had the “There’s just got to be more than this” mentality. Now, some of the things that I wonder about is the purpose of life, why are we here, am I on the right path for my purpose. And if not, how do I find the answers to those questions? Do any of us ever know?

Photos: above, (1) Mom young and full of promise, at the beach on a summer day, below, (2) Lynn, me, contemplating life at an early age, of course with a crayon in hand, (3-7) 5 senses signs that hung in Mom’s room in her last years.

I am home today on a vacation day from work and I am feeling both melancholy and nostalgic. Three day weekends in the summer can be a beautiful thing. Gives you time to enjoy the weather and catch up with your personal life after being tied to a desk in a cubicle, in a room with no windows for 40 hours a week, in addition to commuting 2 hours a day to and from work. Some people live for that life, but I am not one of those people. I feel and know that it is slowly stealing my heart and soul, minute by minute, hour by hour and day by day. I know in my heart of hearts that I was born for so much more…but there I am again, back asking myself the same age old question, “What is my purpose in life?” Who the heck am I and what am I supposed to be doing with this earth life?

The Dalai Lama once said this about what surprises him most:

“Man surprised me most about humanity. Because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived.”

I’ve raised children, gone to school, maintained a home, had lots of animals and dogs, lived a creative life during those years….then went on to college full time (with college kids) and then to work where I remain today. In my younger years, I had friends, socialized and enjoyed music and doing band photography, but it’s not what I dream about anymore. My thoughts go straight to doing what I love doing, whatever that is, something that will sustain me at the same time. You have to do what you love and the money will follow, least that’s what I’ve been told. There are so many opportunities and yet, there are no opportunities for me, it seems. Is that why they call it a “Rat Race”? No beginning, no end, just around and around, chasing after money to pay your bills, never leaving any time to truly explore your potential in life.

Went to the doctor this morning with Vladimir so that I could speak with his doctor. He has some health issues and since he doesn’t communicate all that well, figured that I’d better go since it’s a new doctor for him and not everyone understands his Renglish (Russian accent). After that, I drove over to the farm stand to deliver some home grown organic vegetables from Vladimir’s garden. Next, stopped by Barnes and Noble where I sat and read for awhile, always very calming and something that I love to do but never seem to have the time to do it. Last stop was the supermarket to pick up a few things. While in the car driving over to Stop & Shop, I had the windows open, a beautifully sunny day, not a hint of humidity or wind. The smell in the air was filled with summer, the birds chirping away, bees flying around and all I could think of was how wonderful it was to feel like a human being on this glorious day off. I felt alive and euphoric, and actually stopped to acknowledge it, not an often occurrence. I became anxious to finish my errands and go home so that I could tackle some of the things that I have had on my “to do” list. Like this post for one thing, and lining myself up to start a new portrait, which I haven’t done in quite some time. I’ve allowed myself to become rusty in doing the very things that have always made me who I am, being creative person. I have projects and ideas on my list for too long now, starting with making Rag Dolls, and to create 3-D objects, while learning to use a new computer program, writing and illustrating a children’s book, which I had originally planned to do with my mother. Mom was such a good writer and we spoke about this for a few years before she became sick. I’ve wanted to update my graphic freelance website to a cleaner look and start a website and Facebook page for Vladimir’s business, but none of it has come to light because there simply isn’t enough time in the day/week while working a full time job. Maybe when I was 20 years old, I could have accomplished these goals and dreams, but at this age, there’s just not enough energy at the end of the work day and on weekends, it’s all about getting ready for the dreaded work week. It’s a real and lingering dilemma, an American disease in order to have the American Dream, which no longer exists, unless of course, you are wealthy.

While care taking my mother during her last years, I had hung in her room, small signs that I had originally found from an old AARP mailing. Each read “SMELL“, “SEE“, “HEAR“, “FEEL” and “TASTE“. I thought it would be a good message for her, to see the 5 senses of life hanging clearly on her wall when she woke up in the morning. It was a positive message to start her day and something that I didn’t want her to ever forget, even in the midst of her mental decline. As long as you are aware and can appreciate the 5 senses, you know you are alive to enjoy and be grateful for another day. It means that there is always hope! It may sound crazy to some people going through it now, but I miss taking care of my mother and the purpose that it gave me while doing it. Not quite a year, but I still miss her presence.

So, in ending today, I will just say, be grateful to have a job, do the best you can at all times, make every minute count, enjoy today with whatever it brings….and hopefully the pieces will eventually fit together and make sense.

Can an Alzheimer’s Patient Choose When Their Time is Up…I Believe My Mother Did

Posted on July 19, 2015 by Lynn Brophy

It’s mid July, with a very hot summer Sunday upon us. Can hardly believe that we are almost halfway through the summer already. We patiently wait for summer through the long winter months with its miserable weather, which seems to be a lifetime, only to see summer fleeting right under our nose.

For those of us who are working a Monday through Friday schedule, the weekends are especially important to us and I am no exception. Weekends are sacred, even though no major, monumental or earth shattering events take place in my life. I am happy with status quo as long as status quo is peaceful, happy and healthy. What else can I ask for? What is left really other than winning the lottery! First you should be happy and healthy, as being wealthy can’t do that for you. Lord knows, it could help, but it won’t fix everything. Since my mother Eleanor passed away last September, it’s been a year of unfolding, adjusting and finding a new normal. Since she was a very private person, I discover new things about her and the situation every time that I look into her papers and journals.

Having said all of that, I was home yesterday with a mostly cloudy day and a little time on my hands. I decided to go through the mountains of papers and things on my table so that I could organize and file papers away where they belong. I came across an over sized manilla mailing envelope that my mother had sent to me years earlier, which I had set aside to look at again when time allowed. Back then, my cousin Sam’s wife Charlotte was doing a family tree of my mother’s side of the family and also of Sam’s father’s side of the family. She had learned a lot in her research that I had also wondered about. In the illustration of the tree, Charlotte had written notes and questions for my mother to answer since she was the only one left from that generation in our family who could possibly shed light on her questions. Back then, she showed no signs of Alzheimer’s disease so she was able to fill in a lot of blanks.

Some of the questions that Charlotte asked were about names such as Jessie, was it a male or female in this instance, or marriage dates and deaths. She had no way of knowing our side of the family because Sam’s mother had died years ago of Leukemia and his father had eventually remarried, which forced our side of the family to a distance of cross-country. New wives are never comfortable with the previous, especially where children are concerned, right or wrong, it’s a fact. Needless to say all of us kids and cousins were cheated of a connected family relationship, which was probably more my loss than theirs, mainly because I was an only child in a broken household, in desperate need of a large family connection.

Mom wrote notes on the side of the family tree that Charlotte sent and as I read through it, all seemed normal and interesting, until I came across something that still has me scratching my head, even today. Years ago, back in 1970, Mom married a man named Dwight Van Meter, an advertising executive and photographer, 20 years her senior, living in New York City, whom she met through one of her own prestigious jobs. She wasn’t one to fall in love easily, but she fell hopelessly in love with Van, as he was known, and in 1970, they married. Then, in 1985 when Van passed away after care-taking him at home, she went into mourning until her own death.

She was living in NYC at the time of her marriage and I was off living the hippie experience on Long Island. She was very private about her life and it wasn’t until afterwards, did I learn of her marriage to Van. It was okay, I didn’t mind at all, I was very happy for her and her new life, while I myself being wild and crazy in my own life, which probably wasn’t the smartest thing that I’ve ever done if the truth be told. But it was what it was, and today, in hindsight, it still was what it was and I accept that. What I am trying to say is that, I never really made a mental note of the date they got married. I was way too involved in living my own life at the time as most 21-year-old kids tend to do.

Photos: top: (1) Mom and her sister Lillian on a wedding day, (2) Mom and Lillian young and pretty with the rest of their lives ahead of them,
(3 + 4) Mom and Van, the love of her life, (5) Mom’s pin that she wore on her clothing everyday while living with me. She came to me with this pin. Even though she eventually didn’t remember, she always had to have to pin on. Love is deeper than Alzheimer’s disease.

It wasn’t until yesterday, when I was looking at the notes written in my mother’s handwriting, that I had a HUGE, COLOSSAL, GOOSE BUMP WOW MOMENT. My mother and Van got married on September 28th, 1970. My mother passed away with her diseases of Alzheimer’s/dementia and Leukemia on September 28th 2014…exactly to the date, 44 years. What are the odds of that happening…I mean, what’s the chance that she would have died on that exact day? I am a firm believer in the “there are no coincidences” mentality. She spent the last 29 years mourning Van’s death and writing powerful and emotionally written journals about her deep grief. Before her diseases set in, she made me promise that I would scatter her ashes in the exact place where she had spread Van’s ashes, and I have a lot of maps and instructions that she had sent to me through the years outlining her wishes on that subject. Of course, I promised and will honor her wishes when finances allow. But think about it…coincidence? I don’t think so…I believe in my heart of hearts, that even in her state of mind, that she chose the day she would die and that he came for her on new journey. I truly believe that they are together again, finally, without the indignity of the diseases and pain that they suffered in the end. A true love story.

July 4th, Another First for the Daughter of a Dementia Patient

Posted on July 4, 2015 by Lynn Brophy

Today is the 4th of July, Independence Day for our country, a time to reflect and celebrate the signing of the Declaration of Independence in 1776 declaring our independence from Great Britain while at the same time announcing to the world that we are our own sovereign nation, pledging to our own flag. My Mother was a loyal and proud American, loved to talk politics, voted without fail every year until the day she forgot what voting was, believed in the American Dream and was grateful to have been born in this country. With that said, today, this first year since my mother’s passing, with yet another first upon me….and there have been many so far this year. I believe that everyone must go through these feelings during that first year after a loved one passes, but I never really thought about that until it directly effected me personally. I mean really, how was I to know about the “first syndrome” until crossing that bridge for myself?

Alzheimer’s disease and it’s associated assorted dementia related diseases are a nightmare for our population worldwide with the numbers of effected people and their families rising daily. Although they are making advances in the medical field for these diseases, it doesn’t help those that are or were effected yesterday or today. Yesterday’s sufferers have left a black void in the hearts of their families and today’s sufferer’s are watching the train coming down the track without even realizing it. It’s just a matter of time before their today becomes their family’s yesterday, leaving them to think about all the “firsts” that will occur during their first year after their loved one dies.

Photos: above: (1) My Mother, Eleanor Van Meter/Sarter at various ages, sporting her Kennedy-like teeth…I always loved her smile, below: (2) Mom, young at the beach, one of my favorites, (3) Mom even younger at the beach, probably Coney Island…quite possibly on July 4th!

What does a person think about on the “first” holidays that occur during that “first” year? Well, for me, it’s all about reflecting back to that holiday the year before, which sometimes, there is no recollection of what we were doing that particular day. I know that I was home because that is where my Mother was and I was not working. Chances are we bar-b-qued, which Mom always liked…but what did we bar-b-que? Who the heck knows…point is, when we are care taking, many times, we take for granted every day that passes in just trying to get through, not really cherishing what is right there in front of you. You are struggling to do the best job that you can while trying to earn a living, manage a household and all the chores associated, all the time enduring the stressful existence that you find yourself in with a loved one suffering from dementia. Although we know exactly in our heads, what the outcome will be down the line, it’s incomprehensible to submit or subscribe to the idea that someday, your loved one will be taken by this life sucking disease of dementia. I guess it’s what’s called denial…ending with the rude reality in the grande finale’…leaving us with a whole lot of “firsts” and non-ending reflections from the past to digest. Did we do a good job in care taking, did we embrace the little things that occurred daily, did we tell them that we loved them enough, did they even know that we loved them… a lot of burden to carry around everyday.

In my case, I am starting the 10th month into my “first year” journey. Not many holidays left to reflect on, yet I know in my heart, that when the first anniversary comes around, my brain won’t magically shut off. If I know human nature…and myself, I will go on to reflect my Mother’s existence on this earth shared with the memories that I carry around, both in childhood and as an adult. I’ll try not to dwell or lament on whether I feel that I did a good job of care taking, or not so much, because in the end, we all do the very best that we can considering the circumstances that we are dealing with. I’ll look back and think about the things that she liked to do, her accomplishments in life and the footprint that she left me with. Really, that’s all we can do.

On this July 4th, give the person you are care taking a big hug…trust me, you will thank yourself later.
Happy Independence Day Mom!

Mom’s Supplies Go on to Help Others with Dementia and Alzheimer’s

Posted on June 14, 2015 by Lynn Brophy

After bouncing off of a great weekend, I’m still basking in the rays of the good feeling in knowing that I was able to help a few people. I didn’t realize that there were so many people out there that need a helping hand while taking care of a parent with Alzheimer’s and dementia. This weekend was very enlightening for me seeing Mom’s unused supplies go on to help others with dementia and Alzheimer’s.

While I was care taking my mother, also with dementia and Alzheimer’s, we found the need to use the adult pull-ups for her. It wasn’t easy at first to get her to agree to use them, but after awhile, she accepted them and put up no fuss, except of course, the effort it took to put them on. During the years, we seemed to get monthly deliveries, which filled my basement with cartons of pull-ups, leaving little room to walk around. Of course she didn’t use them all, as no person in the world could have used the quantity that was delivered to her. When she passed away last September, my basement housed 28 cartons of adult pull-ups containing 4 packages of 20 totaling 80 pull-ups per carton. Now, that’s a lot of pull-ups.

From the get go, my intention was to bring the supplies to the local nursing homes to help some other elderly people. Apparently, after calling around to the homes, I learned that they are restricted and must buy from whichever source they normally order their supplies from and are not allowed to accept donations of that manner. Someone suggested that I call the local thrift stores, but I didn’t want anyone to make money from them…I wanted them to help other people like my mother, as a donation…free.

Finally, this past weekend, I decided to post them on Craigslist for Free. To my amazement, my phone started ringing immediately after posting. My phone didn’t stop ringing all day. I was stunned at how many people are in the very situation that I was in with my mother. They all seemed to have the same urgency in their voice. I knew that I couldn’t help everyone, so out of fairness, I took the first 2 callers, who had their own story to tell.

Photos: above, (1) Mom, during the first week of home hospice, still smiling. right, (2) the infamous pull-ups, below, (3) Mom in bathing suit looking pretty snazzy…happy as a lark.

The first caller, Ed, a truck driver told me that he just recently remarried and that his mother had moved in with them because she had Alzheimer’s. His new wife was care taking his mother, which in itself I thought was incredible, but also a huge stress on the new marriage. He told me that he was having the same toileting issues that all of us caretakers have when taking care of anyone with Alzheimer’s or dementia. Incontinence is not a pretty or pleasant sight and it’s definitely intolerable when finding yourself in the middle of this situation with an elderly parent. Plus buying the adult pull-ups on a regular basis isn’t affordable for everyone either, so it’s a tough situation all around. Ed was so grateful to get half of my offerings which would hold him over for quite sometime, that he gave me a huge hug…he had no words.

The second caller Steve, lives about 40 minutes from my location, originally from Boston, as I could hear in his accent. He also sounded desperate to be able to benefit from the free pull-ups. His mother with Alzheimer’s also needed the pull-ups, who broke her hip and was getting out of rehab the next day. She lives with his sister, who is the caretaker for her. They live in Boston, so he would drive the cartons up to Boston right away for her to use. He was an older man on a fixed budget, who was trying to help his mother and sister in any way that he could. Steve told me how much he appreciated getting the cartons and that he would be going to deliver them to Boston the next day.

For the rest of the day, I spoke with many other people who all had the same urgency in their voice, all caretakers to a family member, all needing the help, all having their own stories and struggles. I was truly amazed and touched at how many caretakers there really are out there, all having the same issues when dealing with this disease. When care taking a parent at home, the people who aren’t lucky enough to get their parent onto a state program to help with aides and supplies, suffer the most. They have no break, no relief and many times must quit their jobs in order to care for the parent. I truly believe that there should be an outlet for some sort of help, physical and monetary, while they are able to go to work to support the household. What will become of the caretakers who don’t have a spouse or family member to help out? What happens if they must stay home without employment? It’s huge problem in this country, and it needs to be addressed. The baby boomers aren’t getting any younger and as we all age, there will be more cases of Alzheimer’s and dementia than ever before.

Something to think about…but for today, I will bask in the wonderful feeling that I was left with in helping Ed and Steve with their struggles. Mom would be happy about helping others like herself.

Boomerang-Parents

Omg…My Elderly Mother has Dementia and is Living with Me!