Dementia and Another Reflective Easter Sunday

Eleanor-Van MeterEaster 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 dementiaAlzheimer’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 dementiaAlzheimer’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.

Eleanor Van MeterWith 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).

me111004All 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.


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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.


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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