Mother-Daughter Reflections On This Mothers Day

Mom-babymeMother’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.

Eleanor_Sarter_Lynn_3With 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 5th 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.

Eleanor_lynnIn 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!

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A Sad Reality at the Supermarket Last Weekend

Mom_silhouetteThis 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.

helping-handsAt 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?

Eleanor Van MeterNow 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.

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Contemplating Life After Being A Caretaker

mom_beach3 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?

lynn4The 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.

SeeWent 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.

Taste  Hear  feel

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 forSmell 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.

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

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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-Van_1979 Mom_Van_xmasMom 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.

Van buttonIt 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.

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How To Speak To A Person With Dementia

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Taking care of a loved one when they are suffering from Alzheimer’s disease or dementia is a very challenging task as we all know. It’s probably one of the hardest things that you will ever have to do in your lifetime, but it is also a monumental accomplishment.

In the beginning, you will notice small things like forgetfulness and little things that might seem like unusual behavior, but even then, you might brush it off as a result of stress or being over scheduled. When the episodes become more frequent and you find yourself standing there scratching your head, because you know that there is something very real happening to them. Instinctively, you know, that life will never be the same for you or them.

Ggma_mom_1939  mom-dad-boat

(Photos) (1) Eleanor Van Meter with her grandmother. So young and pretty! (2) Eleanor, Mom, with my father, Edward Brophy on a boat, somewhere, appearing to be enjoying themselves…with her whole life ahead of her. Who knew what the future would bring?

The behaviors, of course can vary with each individual, but many of the behaviors, I have found strangely enough, to be identical to other patients suffering from this disease, leading me to believe that the same part of the brain is effected in all patients at this stage of the disease. As in the case with my mother, Eleanor Van Meter, as she started into her journey with dementia, I found that she would be very paranoid. She would always be hiding things and then forgetting where she hid them. When she couldn’t recall where she hid them, she would make a beeline straight for me, accusing me of everything under the sun. I’d be sitting at the computer in my kitchen, where I normally would be on a Sunday afternoon, and she would shuffle in with a puss on her face a mile long and fury in her eyes, heading straight over to me. “Where are my credit cards, where are my medical cards? You took them, I know that you did…you were always a rotten kid, I should have never had you, you little shit.” The first time that happened, I was completely taken off guard, immediately I felt hurt because of her words and then I became defensive while declaring loudly that I never touched her things…I wouldn’t do that. In the beginning, I didn’t know how to handle this, knowing that I didn’t steal anything, but at the same time not knowing how to speak with her about it so as to not fuel the fire making it worse. Actually, in the beginning, you are so taken off guard, you are not thinking of anything except defending yourself and your honor against their harsh words. That train of thought would soon would change…

Through the school of hard knocks, I learned first hand, that arguing with someone who has dementia is an argument that you will never win. Never, never, never, ever try to argue with your loved one with dementia. You will NEVER win…EVER! They have a way of going around and around and in the end, you will be so frustrated that you will want to cry or explode, whichever comes first. So, how do we speak with our demented parents in that situation? I came to learn, first and foremost, be calm, speak softly, slowly and with compassion about them having lost their things. There is nothing that you can say that will make them believe that they hid it somewhere, forgetting where they put it. They can’t remember that little fact. They only remember where the object always resided before. Their brains are not working correctly anymore and certainly not in the way yours works. They honestly believe that you stole their things….because they certainly wouldn’t have moved anything themselves.

It’s important to sympathize with their loss and that the missing object will probably turn up, and how sorry you are that they can’t find it. Chances are, they won’t believe a word you are saying, but at least in the end, you know that you spoke with them in a loving way and that you tried not to upset them any more than they already are. Validating their feelings and their loss will only help the situation and you stand a better chance of calming them down and snapping them out of the dementia attack.

You might want to try and change the conversation to something else, such as I used to do with my mother. In hard times such as this, I would ask her if she would like to listen to Pavarotti, her favorite singer. She would always agree and we’d go back into her room and I’d pop the cd into the player, she would sit there listening as if she was in a trance, forgetting about her earlier concerns. This was usually the best part of her day and I was happy to see the peaceful look on her face once again as she appeared to almost be floating on every note that Pavarotti was singing. That was heaven on earth to her.

Funny thing, most times when my mother snapped out of a dementia attack, after accusing me of stealing things, later, she would always come to me and apologize. 

I would ask her, you remember acting that way? She would say yes…I can’t seem to stop once it starts. I always found that amazing…it was living proof to me that she was very aware that there was something very wrong with her.

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How to Diagnose Dementia or Alzheimer’s Disease?

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Diagnosing dementia or Alzheimer’s disease isn’t an easy task. Finding the right doctors who ask the right questions and order up the right tests and scans can take time and effort on your part, but it is important that we take the steps to assure the diagnosis is made.

The signs of dementia and Alzheimer’s disease may come on very slowly and when you see someone all the time, you are less likely to notice it right away. You may notice forgetfulness and think to yourself, well, we all forget once in awhile. But then it becomes more noticeable in that your loved one is forgetting more often and it’s then you know for sure that something is going on.

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With my mother, Eleanor Van Meter, it happened slowly in the beginning also. She lived in California and I lived in New York, so we were forced to speak by phone on Sundays to catch up and check in. I had noticed that she was forgetting a little here and there, but so do I, it’s normal. I really didn’t give it much thought other than, Oh, she’s just getting older and slower now, nothing to worry about. Then on that fateful day in August of 2008, while at work, I get a phone call at 12 noon from her apartment manager…Mom had fallen and broken her hip. The ambulance had come to take her to the hospital.

Photos: above (1) Google image, (2) drawing by Lucia Whittaker, via flickr, right, Mom in doctor’s office waiting for a routine visit 

After a hip replacement and physical therapy, it was decided between us, that she would come live with me. I went out to California to clean out her apartment, then picked her up from a respite stay and we flew back to NY. I converted my home office to a bedroom and that was to become her room for 6 and a half years. It went well at first but then little by little the strange behavior began, more incidents of forgetfulness, accusations and paranoia. Then all of a sudden, she would snap out of it, which is the confusing part. Later, she would sometimes apologize for the way she acted…she realized her behavior was bad, but couldn’t stop herself. I began to think that maybe she was so used to living on her own for so many years, that she was behaving this way because she just wasn’t used to having people around all the time.

Of course after awhile, I began to think that I needed to speak with her general, geriatric physician on the next routine appointment, which I did. He gave her a 5 minute memory test and proceeded to dismiss me, saying she was fine, no dementia. I tried to explain that I live with her and I see and feel that something is wrong. He disagreed. We went home and the behavior continued.

After another 6 months of this behavior, I knew that I must research and find out more on what I should do to address what is happening before my very eyes. I found that a Neurologist or Geriatric Psychiatrist was a doctor who was qualified in diagnosing dementia and Alzheimer’s disease. I found a Geriatric Psychiatrist located about 20 minutes from my home that came highly recommended. I made an appointment and filled out extensive paperwork, he examined her with many follow up appointments thereafter as the progression of the disease went on. Diagnosis was an ongoing process and observation. He worked with me on every level and concern in order to handle the disease and the quality of life for all involved.

As the disease progressed, of course there were adjustments that were needed to be made with her medications to suppress the aggressive behaviors, and there were many, believe me. It was not always easy, but he would always help the situation at hand, making it a better home life for all of us without over medicating her. Every drug regiment is different for each person and the doctor must find the right combination for the situation. In my mother’s case, Ambilify in combination with other prescribed drugs was the magic brew that made her from the wicked witch of the west to a fairy godmother once again! She was then reverted back into the sweet little person she had always been before this dreaded disease put it’s evil grip on her. For another person it might be a different drug…it’s individual.

The bottom line is, if you suspect your loved one has dementia or Alzheimer’s disease, research the specialized doctors in your area, try to find a social worker who can help or recommend a doctor, which, in my humble opinion, is the best way to find a good doctor. You can be sure if someone else has had a great experience with a given doctor, you probably will also. Don’t wait until the situation becomes unbearable causing resentful feelings between you and the person effected. Your mother, your father, aunt or uncle or wife, they deserve the best care you can give them. They are at the end of their life and as in the case of my mother, she knew exactly that this was happening to her, maybe not understanding what it was, but she was aware. Just try to imagine how that must feel. 

Looking back, it’s the saddest thing ever to watch as they decline into the void, and knowing that they are aware.

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Alzheimer’s Disease, Dementia and Mental Decline

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Alzheimer’s disease and dementia has effected more and more people over the years. Babyboomers are all coming to age and have been faced with taking care of their elderly and aging parents, either coming to live with them or caring for them in the parental home. Either way, it is not easy, mentally, emotionally or physically. It’s hard to see the very parent who was once your tower of strength, come to a point where they are declining so much that you are becoming their parent and they your child. Most of the time we are doing this while trying to manage our own families, kids plus working full time. It’s becoming a desperate time for our generation and shows no signs of slowing down any time soon.

Photos Above:  (1) Mom’s handwriting in 1985, (2) Mom’s handwriting at work, shorthand, (3) Mom’s handwriting 2014 weeks before her death, (4) below, Mom at an office party with Maury Amsterdam at what was most likely Bozell & Jacobs in NYC in the 50’s or 60’s.

My mother, Eleanor Van Meter was a very intelligent woman. She aspired her whole young life to be a career woman, and that she was. She worked in NYC at prestigious companies as an executive assistant, usually with the head of the company that she worked for. She had many responsibilities and took it very seriously. So, with that said, it was so hard for me to see her decline to the degree that she did while living with me. I looked at her as my superior, both mentally and in pecking order as a parent. And then, without a moments notice, I was her parent. How are we expected to cope with that?

I watched her slow decline over the span of about 6 and a half years after a fall in a supermarket, breaking her hip. A once brilliant woman, was now arguing with me on a daily basis, accusing me of all sort of crazy and insane things and at first, I would be hurt by her words, but then after educating myself, I understood what I was dealing with. Her father also had dementia, but being a young person at that time, I don’t remember this side of the disease with him. I do remember him sliding into the void, not knowing us, just staring into space with void eyes while confined to a wheelchair. I realized that this was the direction that my mother was heading in.

My mom was a born office worker. When living with me, a good day for her would be to sit in her room going through all sorts of paperwork, which could keep her busy for hours upon hours. She was no longer able to take care of her monthly affairs, so I had to take over for her. She would sit with her boxes of papers for long periods of time sorting and filing and trying to make head or tails of them. I knew that she didn’t understand what she was looking at, but was trying desperately to figure things out. After all, it’s what she had done almost her whole adult life and now she would sit baffled by what she was looking at, yet at the same time knowing in her heart that she used to know.

She loved the English language and would pride herself on her poetry and the use of the words in her writing. She also wrote letters, diaries and journals for years. Her best friend Noreen, who has known her since the early days in NYC, has told me of how wonderful mom was in her professional life. She also told me how her letters were so brilliantly and carefully written, that she could have been a professional writer. She was that good with the English language. The images above are some of the things that I found in her papers which demonstrates the obvious decline in her handwriting. The first one, just an excerpt from one of her journals, was a nostalgic look back from when she was a child. It was a happy time and written in her usual handwriting that I remember so well. The second is her professional handwriting, shorthand, taught in school and used throughout her adult life in both professional and personal times. I don’t know much about shorthand but I felt as if it was a different language, and as individual as she was. She would use it right up until the time her mind started declining. The third image is something she wrote a few weeks before her death. It’s hard to look at and certainly hard to understand how the mind could decline so drastically so as not to be able to remember the very thing that fueled her existence in better years. I can see on the second line that she was trying to write her name, ELEANOR. She started out with all caps and just couldn’t resolve it in the end, leading her to just scribble. How frustrating it must have been for her. I would ask her on several occasions when she couldn’t get the words right, “you know exactly what you want to say, don’t you…but you just can’t find the words, right”. She would always say yes, and I saw the pain in her eyes. Dementia wasn’t who she was, it was what she suffered from. Who she was, was an intelligent, highly organized and professional person with a very kind soul.

The very saddest thing, is that they know it’s happening to them…they know what they were once able to do, but no longer can do. They don’t understand why, but they absolutely know it’s happening to them. This is a very cruel disease. 

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Dementia vs. Alzheimer’s Disease

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Last week at work, I was having an interesting conversation with a co-worker / friend about the differences between dementia and Alzheimer’s disease. We both were having trouble coming up with a definition. The 2 terms are used next to each other all the time and many of us really don’t know the difference between them.

When my mother was diagnosed with dementia after her brain scan, I was never told what type of dementia that she had. I still don’t know. I’ve asked the doctor a few times but he never really gives me a breakdown of her dementia diagnosis. The word Alzheimer’s was never ever brought up in conversation so I can only assume that she is not suffering from that end of it. Since her father also had dementia and she seems to be following in his footsteps and appears to be a textbook case of everything that I’ve ever read, we consider her having dementia.

Yesterday, I was having a haircut with a who I’ve gone to for almost 30 years. I have followed her from salon to salon because she is about the only person in the world who knows every cowlick on my head and every twist in my fine hair… she knows almost every little thing about me after all of our appointments over the years not to mention all the conversations that we’ve had about our families and life in general. She’s very informative and seems to know a lot about a lot of stuff! I guess that’s only natural when your occupation revolves around conversation with your customers for many years plus the best haircut in town!

Sitting in her chair, we were going through our usual what’s new conversation when she had asked about my mother.That brought to mind my talk with my co-worker, so I mentioned that to her.

Just what is the difference between Dementia and Alzheimer’s disease?

 Why is it such a dilemma when trying to nail down an exact definition? Good question, I thought to myself. With that, she says…I was just talking to one of my customers the other day about that, who just happens to be a nurse. She gave me a very simple and easy way to tell the difference.

She said: Dementia is when you can’t find your keys, for example. You misplaced or hid them and can’t find them. Alzheimer’s is when you don’t know what a key is. That was about the best analogy on the subject that I’ve ever heard. That made it crystal clear about the differences between Demenia vs. Alzheimer’s disease.

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