Tag Archives: behaviors

Dementia Isn’t Who My Mother Was, It Was What She Had

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Today, I was reflecting back on something very nice that my mother had once done for me. Not sure what got me to thinking about it, but in these past months since she passed away from dementia and leukemia, some past memories have been surfacing. She was really a good and decent person even with all of her challenges and struggles that she faced in her lifetime. Even so, it never stopped her from being a good person.

Photos: above, (1) Mom (Eleanor) and me (Lynn) in my first year, (2) Mom (Eleanor) and me (Lynn) in Florida getting cooled off, below, (3) Mom (Eleanor) and me (Lynn) on what looks to be a ferry, (4) Mom strolling me around, (5) Mom posing with me, looking kind of goofy!

Dementia and all the complications and behaviors associated with it, usually happens toward the end of a person’s life…meaning that dementia sufferers are people too, in spite of the disease. They have led mostly normal lives with normal childhoods, have had both good and bad experiences in young adulthood, dating, working, marrying, socializing, the same things that we all have experienced in our own lives. Too often when in the throws of care taking dementia patients, we can forget this, not purposely, but because we get so consumed with having to make decisions for them, sometimes we forget that they also have feelings, likes, dislikes and individual preferences and because now, they have dementia, all that was once your parent, spouse, relative or patient, has faded silently into the background. Some people might not think that their opinion matters anymore, that it’s irrelevant. Then at some point we realize…dementia isn’t who they are, dementia is what they have.

Eleanor_Sarter_Lynn_4Back during a time when I was going through a particularly stressful divorce, I had decided to go back to college into a full time program, which is what I did for 5 years, right along with the young college students that attended at that time. I was very fortunate to be able to do that and I am very grateful to have had the opportunity. Unfortunately, I was living on next to nothing, eating pasta for every meal because there was no money coming in. The husband had not lived up to his legal agreement in helping me while I was in school learning a profession so that I could be self sufficient. For 23 years before, I had been a stay at home mom, raising his children and now it became very important for me to go to school and do it well, which I did when finally graduating with a 4.0 GPA. Looking back on eating all of that pasta, I can now understand why I am a 100 lb. diabetic! It was too many carbohydrates eaten as a daily staple food.

Eleanor_Sarter_Lynn_1It was common knowledge back then that I loved the Beatles and it was at a time when a brand new book came out, a super sized book called Anthology. It was expensive, so I never even considered that I’d ever be able to have a copy. Mom would call me pretty regularly from California, where she lived for many years. She was a great moral support during such a bad time. She couldn’t financially help me as she was on a fixed income herself, but that was ok, the moral support was enough. I happened to mention to her one night about the new Beatles Anthology book that had come out. It wasn’t a long conversation, just said matter of factly. That was the last time that I had spoken about it with her.

The days and weeks passed and before knew it, holiday time rolled again. Usually, I would go to my daughter Kim’s house to spend Christmas afternoon with her and her family, and this year was no exception. While there, Kim brought out a nicely wrapped gift that she said was for me, from my mother. I was surprised because Mom would usually be very low key during the holidays because of her own situation. Upon opening the gift, I realized that she had bought me the Beatles Anthology book. Apparently, she had sent the money to Kim who was able to purchase it for her, a little surprise that they worked together on. I was so touched that she would do that for me because in reality, she couldn’t afford to spend that kind of money…but she found a way. It was just the kind of person that she was. There were so many other times as well over the years where she would manage to show who she was with the kindness in her heart, while struggling with her own problems.

Eleanor_Sarter_Lynn_2Mom was always doing nice little things like that, mostly things that didn’t cost money but things that made people happy. She would love to read the newspaper and would regularly cut out interesting articles from her California paper and send them to me. A few times a week, there would always be an envelope in the mail with interesting articles that she thought I would enjoy. Between the phone support and the envelopes in the mail, I was able to come through my situation feeling pretty confident and good about myself knowing that there was someone in my corner and on my side.

The bottom line is, that dementia or Alzheimer’s couldn’t take that quality away from her. A disease can change your quality of life, effect the way that you act because of the symptoms and it can ultimately take your life in the end, but it can’t steal how people remember you or the person that you were before and how you treated the people in your life. The way you treat people will follow you through life whether it be good or bad. I’m proud to say that my mother was a really good person and that’s how I will remember her always.

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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.

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(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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