Monthly Archives: January 2015

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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script     shorthand      handwriting

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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Happy Birthday Mom, I Hope You’re Celebrating Wherever You Are, Without Dementia

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mom-cardine   Birthday 86

Photos of Eleanor Van Meter: (1) Mom on her 86th birthday last year with her wonderful Home Aide, Cardine, January 22nd, (2) Mom, on birthday night, ready for bed after candles and cake

Hard for me to believe that a whole year has gone by since my Mom, Eleanor’s last birthday. Seems like yesterday really. I look at the photos above and can hardly believe how good she looked and feisty she was, as in comparison to the last few weeks last September. If she had been able to hang on for a few months longer, she would have been 87 today. She would be, what I believe, to be the oldest person from this side of the family. It would have been quite a milestone for her and for me, in knowing that we did it…but it was not to be.

Before she moved in with me, we would talk by phone every Sunday night about writing a children’s book together. It’s something that I have always wanted to do and together with her, we could have made a great team, if only her dementia could have been held at bay awhile longer. She had a way with words, and she loved them, writing and combining different words to suit what she was feeling at the time. She could be quite whimsical as well. I could have illustrated the book and she would be a major contributor of the writing…and there you have it, a mother and daughter production…but it was not meant to be…at that time at least. I still have intensions of writing this children’s book, but now, it will be a tribute to her rather than a collaboration. It’s okay…her influence will be obvious in spite of it all.

Mom also loved poetry. She loved reading it and she loved writing it. I have a whole folder of things that she has written, some of which came from her darker days after she had lost the love of her life, Dwight Van Meter. The poem that I cite here was an interesting and simplified look at what she was must have been thinking of her life in that particular year, with regards to how her life has changed over the years. I probably wouldn’t have understood her feelings when I was younger, but I certainly understand it now.

Mom_bch_102x102  Mom-babyme mom_young5

Photos of Eleanor Van Meter: (3) My favorite childhood photo of my mother, she was a cutie at the beach. (4) Mom with me, another favorite with her huge smile, (5) Mom looking great in her summer fashion.

How happy
as a child
I walked into the sun,
Squinting and laughing,
full of mirth,
Secure in a world of light,
The sun
now always at my back,
I turn to see once more
the shining past
Before the night
envelopes me at last,
I remember it was good,
I thank God,
and walk on,
Secure in a world of memories

Eleanor Van Meter

Mom was a very deep person with many feelings that she mostly kept tucked inside, but after reading some of her writings, I can see she let it all out in her poetry. I think that it gave her peace. I remember after she had moved in with me almost 7 years ago, her poetry folder was the most important thing to her. Nobody was allowed to see it and after the dementia started to take a hold, I would find her ripping up a few pages. I sensed that she probably didn’t want anyone knowing that part of her, or maybe, she possibly let out too much of what she was feeling at the time and wanted to keep it secret. It’s okay, I still have a few left that I can look through from time to time as a memory of her. I have a few of the poetry books that she particularly loved with pages earmarked and notes taken on some of the pages which can be very telling also. I think that there was so much more to her than what we saw. Like all of us, she was an original and I will always miss her. Happy Birthday Mom!

 

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After Losing My Demented Mom, Now What?

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kim-kerry_cabbage-patch-dolls    K-K_santa

Funny how sometimes, when things are on our minds, we find ourselves thinking in our sleep. I mean we are sleeping, but while we lay there asleep, our brains are going over things that are on our minds, things that are bothering us. That’s how this post came about….now that Mom is gone, now what? How do the holidays or any other day work for me now? Everything takes on a different meaning since September. Before, my days were spent focused on Mom, no matter where I was, she was the priority…now I have to adjust my thinking.

Since my Mother passed from Dementia/Leukemia this past September, other thoughts are starting to come forward and have been flooding in, uninvited, especially during the holidays this year. Now that I have no elder family members left, I am looking at the road ahead and seeing where it’s all going. Not that in every family it will go this way…but everyone is different with different experiences and different ways of dealing with life. There are divorces, marriages, ex’s, in-laws and the stresses of care taking an elderly parent which contribute to how things will be, changing the rules of the traditional holiday game forever forward.

Photos Above: (1) Kim, Kerry and Jennifer on Christmas Day with handmade dolls and store bought dolls  in their Holiday outfits. (2) Kim and Kerry with Santa

Looking around on Facebook, seeing all of my friends posting their happy family gatherings in photos during the holidays, was very reminiscent of earlier times in my life, when things were better and the family was a solid unit. Every Christmas was a “New Year”, bringing with it new Xmas lists for Santa. I always had my work cut out for me, but I didn’t mind, I loved it. I loved making it all come true for all of them. With every year being different, with different requests, different expectations and different gift themes, there was a lot to prepare before the big day.

Early on we had started out with a real tree, making the house smell like a pine forest…it was wonderful…very Xmas-sy. It would get everyone into the mood for the holiday season. A 10-month old Hannibal, the Great Dane, peed on his first Christmas tree one particular year…I guess he was confused! That was a story that has been told over and over throughout the years.

Some years, I would spend the months before the holiday, sewing, from the time the kids went to school until the time they came home, to make sure everyone had a new outfit, top or craft, including the adults. My mother still had some of what I made for her when she moved in with me almost 7 years ago. Other years there were things like Cabbage Patch Dolls, which were so in demand back then. I would have to get up with the birds, literally, and go stand on lines at the toy stores to assure I would get 2 dolls in time for Christmas. Another year, I had also sewn 3 Cabbage Patch doll-like dolls for them. Along with other store bought dolls of their choice, there were 2 for my kids and 1 for their friend Jennifer Brengartner. So that year, they got 2 dolls each, one hand made and one store bought doll.

Photos Below: (3) One of the early Xmas trees (4) Kim Paul, Kerry Paul and friend Karen Kearns with Cabbage Patch Dolls on Xmas day. Kim sporting her fashionable neon!  

xmas_baldwin2   Xmas_baldwin

No…it didn’t end there, by any stretch of the imagination…there was more. When I look back, I can see that I left no stones unturned. We would get up on Christmas morning, the husband and I would get our cups of tea so that we could sit and watch the kids open their gifts, which would take about 2 or more hours. Yep…just like most parents, we went overboard…or, shall I say, I went overboard. We all know that husbands don’t do any of the preparing, at least not in our house at that time. The shopping, the wrapping, and all the preparations for the holidays were up to me, and looking back, I feel that I did a good job of it. In the years that the kids were in school our tree had so many gifts underneath that we could hardly get into the room on Christmas morning. It was wonderful to watch the excitement in the kid’s faces as they walked into the room in the very early morning. So many gifts, some asked for, some not but we all know how nice it is to have gifts under the tree, just for us to open on the big day. The anticipation and the warm feeling of the day helped to create the excitement.

After a few hours of gift opening, and while the kids were looking deeper into their gifts, I would then put together the expected Christmas breakfast, which normally would be an egg-sausage casserole, that would become a yearly tradition. That would usually hold everyone over until dinnertime, with a little snacking throughout the day, until a few other family members would arrive for holiday dinner. During the day, there would be Christmas music or holiday movies, and a lot of Xmas spirit flowing throughout the house. It was a wonderfully warm feeling…at least for me as I favorably recall. The day was usually a huge production and took a lot of work to put together, with planning and cooking dinner to make sure everything was good and festive for all. There were years and years of this routine, always with a lot of heart and soul put into it, leaving no stones unturned. It was no easy task for someone who came from so much less, but none-the-less, I did it and it became the yearly tradition until the last Christmas that we were all together in the year 2000.

Looking back, I have no regrets, absolutely none. I feel as if I did all that I could do to assure the holidays were festive and happy, with warm feelings for all in our family and circles during those years. Things happen in life that prevent us from participating, as with me, life altering events…a divorce, 5 years of college, full time job and taking on my demented Mom. As fate would have it, since the year 2000, I’ve all but fell off the radar during the holidays, but it’s okay. Sometimes it’s necessary to move forward in order to accommodate the situation. Kids grow up, get married, have families of their own…celebrate in their own way……life goes on!

Mom_Van_xmas   village-1

Photos Above: (5) Mom and Dwight Van Meter back in the 70’s at her parent’s house during the holidays, (6) A Christmas village that her father, Bruno Sarter would set up every year using little cars, houses, trucks and everyday street items that he saved since childhood. In it’s entirety, it was quite impressive.

According to numerology, as studied by my Mother throughout her whole life and taught to her by her Aunt Emily, our life is divided up into thirds which are called Pinnacle cycles, each covering 30 years. I am now into the third and last Pinnacle cycle of my life and since each person is an individual, all having different experiences, fate and karma, not to mention lessons to learn this time around, I am sure that the universe is giving me what I need at this time…and I am also confident that this too shall pass!

Accept what is, let go of what was, and have faith in what will be!

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New Year’s Day, Thinking of Mom, Saying Goodbye to 2014 and Dementia

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Eleanor_lynn   Mom_blue

Here we are, New Year’s Day 2015, a new year for all, bearing new possibilities with every day. A fresh start with new hopes and dreams set forth into the months to come…New Year’s resolutions. I have to say, that I am more than happy to say goodbye to 2014 than any other year that I can remember, not that I wouldn’t want to go back a year when Mom’s struggles weren’t so serious. Maybe, I could have been more aware of what was to come and been more present…the shouldda’s, couldda’s, wouldda’s. But we can’t do that, we can only hold on to the good memories, knowing that we did the best we could under the circumstances, which is what I choose to do where my Mother is concerned. I was lucky to have had her in my life for the 6 years that she lived with me here, even with the struggles, which never would have happened if she hadn’t been sick with Dementia and needed my help.

Photos Above: (1) Eleanor Sarter (Mom) and Lynn, sporting a similar haircut to Mom in her childhood years, sitting on the stone wall in Greenwood Lake, 1957, (2) A blurred, blue, photo of Mom sitting on her Mother’s back stairs looking very young and carefree in her flowy dress. Wonder what she was thinking about?
Photos  Below: (3) Eleanor Sarter (Mom) with Lynn on bench in Greenwood Lake at her Aunt’s house, (4) Newspaper clipping from years ago that Her Mother found meaningful. It was about your thoughts, somewhat similar to my last post of “A Man Thinketh”. Keeping that train of thought alive. Words to live by!

Eleanor_Lynn3     g-g-be_careful

This dreaded disease of dementia shouldn’t define your loved one. It’s not who they were and not what they should be remembered by….it was their bad fortune to have been afflicted with it, but it didn’t define their life. I might say the same about the other diseases that Mom picked up along the way such as Parkinson’s disease and Leukemia…or any disease for that matter. No disease should define someone…we all are who we are and have accomplished great things in our life time, making wonderful memories, none of which include disease. Bask in the memories, the good stuff that they left behind! It’s all we have now.

Today, on this first day of 2015, I am reflecting the past year…and also thinking about how I can put my projects into action. Projects that have been in my mind for a few years now, but never really having time to start. You’d think that with Mom gone, I’d have more free time, but for some reason, I almost feel like I have less time…but do I really? When I look at some of the things that need to be done weekly, I can see a lot of my personal time is spent on busy work, which is exactly what everyone else I speak to says. Of course being gone from the house 12 hours a day to be at work doesn’t help my cause. That’s crazy nuts! I know that someday that will change, because we can’t work forever, but I sure would like to get my projects into action before that happens. Perseverance…little by little….step by step…inch by inch…it’s all cumulative! Just Do It!

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