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.

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

Posted on April 26, 2015 by Lynn Brophy

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.

Back 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.

It 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.

Mom 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.

Dementia and Finger Painting Go Together

Posted on July 16, 2014 by Lynn Brophy

Still home on medical leave and although my time off was brought on by a surgery and hospital stay, I am happy to be home during the day and catch up with my life which under normal circumstances never would have happened. Normal life has a way of doing that.

While being home, I’ve noticed more and more that Mom is a different person every day. Yesterday she was fascinated with the snaps on her nightgown, keeping her busy for hours. This morning it was taking a spoon
and scraping dried ice cream from her night before that I forgot to take out of her room. Later who knows what
little thing that might catch her eye and mind. A few nights ago I went into the kitchen to prepare dinner and
when I went to check on her she had a large paper towel on her little table. she had poured water on it and proceeded to finger paint with her Desitin. She looked like an over grown child having a good old time finger painting in her own little world. I guess people with dementia find fun in the little things.

I’ve bought her crayons and a coloring book which she doesn’t seem to have any interest in. Cardine sits
and colors and Mom just sits there and watches her do it. Cardine is so good with her, she understands how her mind works. I’m not there yet but I am trying. Before I brought Cardine on board, Mom used to love to use her markers to mark all of her clothing and sheets. I finally had to take them away as she was making a big mess. She had a pair of small scissors which she would sometimes cut her blankets, sheets and clothing. Still can’t figure out why she would want to do that, but in her head it made perfect sense. Of course, I took away the scissors!

Bottom line is, that you can’t trust them with mostly anything, the simplest of things, unless they are being monitored. You see an object in one way but they see it quite differently and you never know what creative ways they will use it.

Bottom line is that this disease of dementia is nasty, no matter which way you look at it.

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Dementia Patients Will Always Gravitate to that Which They Have Been Passionate About!

Posted on March 3, 2014 by Lynn Brophy

Hi-Ho-Hi-Ho, it’s off to work we go…My mother has always loved and aspired to be in the work place. Growing up in her parents house, she would hope and dream about someday joining the work force, being in Manhattan, working for a company while doing what she loved. It just goes to show you how different we are, as I had always aspired to be my grandmother, a wife and home maker with absolutely no desire to work outside of the house. While I can accomplish more at home with respects to creativity and home, my mother felt more useful in the office. Maybe her desire to be in the work place had something to do with her mother being a home maker…and maybe my desire to be a home maker is because her my mother wanting to be in the work place…who knows. I guess you can drive yourself crazy trying to analyze it when in reality, it is what it is.

So, now with mom smack in the middle of late stages of her disease, she still aspires to go to work. She has verbalized this to me in the morning while I am making my exit out the door for work. She has said “sure wish I could go to work instead of you”. I say “so do I”…And at other times while in the middle of a dementia attack, she would even try to leave the house to go looking for a job. Leaving the house became a quite a dilemma, therefore needing to get a home aide while I was at work to keep her safe.

To compensate for her great loss, she now goes through papers…any papers, old bills, newspapers, notes, letters. She lays them all out on her bed very neatly being mindful to make little organized piles covering half of her bed. Not sure what type of filing system she has but she seems to know what she is doing. One morning when Cardine, her home aide, was here during the week, she told me that my mother was worried that nobody would show up for work that day and that she would have to send Cardine home and close up for the day. She was imagining that she was running a business here at home and that because of the snow, nobody would be coming that day. I found it amazing that a person can be so into their own head, remembering so long ago and continue to try and act out what was so dear to her, while somehow making herself feel at peace. The mind is a strange thing and everyone is unique in the way they compensate.

So now, I try and leave out her boxes of papers so that she can organize and file when she has the mind to, keeping her busy, literally for hours upon hours. She has a closet filled with games, puzzles, playing cards, coloring books, but it is her papers where she feels most useful and at home. I think the word useful is the key word…back in her day, she worked at some very prestigious companies with very important positions, working closely with her boss and co-workers. She felt useful and needed, and knew that she was very good at what she did. They relied heavily on her and she took it very seriously. Hanging onto her work life is a way of hanging onto who she once was, who she still aspires to be… well, actually who she thinks she still is. She may have this terrible disease called dementia, but deep down inside, she is still the much needed and useful person she once was.

The image above shows Mom’s family…Sister Lillian, Mom, Mother, Father, Cousin Raymond and Uncle Sam. Taken up in Greenwood lake where her Aunt Adlaide lived. Who knew that young girl had such deep thoughts on where her life should go….but the good news is, that she accomplished it…she lived her dream…she was a valuable employee to the likes of the Rockefellers, ABC, Forbes Magazine, Bozell & Jacobs Advertising. She was good at her craft and she was valued and needed. What more could a person ask?

I’ve Been Wondering Where My Mother Is…

Posted on February 13, 2014 by Lynn Brophy

Today is my grandmother’s birthday…February 13th…the day before Valentine’s Day. She would have been well over 100 years old by this time. A day that I can never forget..I will never forget, February 13th. She was my rock as a child. This was her wedding photo. I can’t help but notice that she had eyes like blue ice. I thought she was pretty as a young person. It’s actually hard to believe that your grandmother could ever have been young, but they, just as we, were once young and vibrant, now a thing of the past.

Well, it’s common for a dementia patient to be looking for their parents and that has held true for my mother throughout her disease as well. We went through this long period of time where the main focus of her day, mostly at sundown would be spent looking for her mother, and Cardine would have to stand in front of the door to prevent her from leaving to look for her. What is that? Is she just going back to a good time in life, and therefore remembering her mother? Or perhaps, she is thinking that she is 10 years old, or in a crisis where she needs the good advise of her mother. We will never know.

There is one thing that I do know. I was home, yet again today from yet another horrendous winter storm, a classic noreaster, that the northeast has been facing this year, when my mother walks out to me looking for her mother. This hasn’t happened for a very long time and I guess, it got me to wondering. While cooking dinner tonight, low and behold a thought goes through my head…OMG…it’s my grandmother’s birthday today. Of course she came to me looking for her mother…even though she is void of her memory, a black hole, but somehow, some way she knows. It’s her mother’s birthday today but doesn’t know how to verbalize it and probably can’t even make sense of it. The thought of her mother is just there at the top of her mind. This was astronomical for me as a believer of this train of thought. I truly believe that her mother was here, in this house today, although I am not in tune enough to know that…somehow, some way, I believe that…all unexplainable.

Her mother, my grandmother was a crucial role model for me and she was something to behold. She was very old fashioned and very dedicated to her family. She took me on even when it was too much for her, as I was quite a handful as a child. My mother relied heavily on her to fill in when I was sick, on weekends, summers, holidays or just whenever and I loved every minute of it. I thank god for her as she is the reason that I am as normal as I am. I have always aspired to be just like her. Again, be careful for what you wish for in life. She died from the stress of taking care of her husband with dementia. I miss her as much as my mother does. Happy birthday Grandma!

Oh What a Night…Sleeping Problems and Dementia

Posted on January 18, 2014 by Lynn Brophy

Wedding Day, 1949

Young and Feeling Pretty in Greenwood Lake

Dementia is a nasty and dehumanizing disease. Taking care of Mom can be challenging at times. I know at some point I will laugh about this, hopefully big belly laughs and good memories, but I am not there yet. It was a rough night last night. Matter of fact, lately, every night is rough because Mom has her days and nights mixed up. She naps a lot during the day and is asleep by the time I get home from work. Not just napping, but sound asleep, as if she is exhausted. I wake her up and she opts to skip dinner, although I must give her the nightly meds. She isn’t hungry for dinner but she sure would appreciate something sweet to wash down those nasty meds. I comply because she must have her meds with something in her stomach, so rather than argue with her and have regrets later, I just give her something sweet.

She will then go right back to sleep and at 3:00 am, I hear shuffling around the house. I get up and let her know that it is the middle of the night and that she must go back to bed. Of course, she couldn’t care less and just goes about her business. My mother is a child again…I’ve come to learn that children are for the young! There is a very good reason why young people have babies…they can do it. Grandparents send the little ones home…because they can’t handle it. When you are getting up at 5am to get ready for work, this is not a good thing. Makes for a cranky daughter and a crankier employee.

Not exactly sure how to handle this situation although I’ve been given advise that she is at the point of possibly taking sedatives at night to help her sleep until she is back to being awake during the days and sleeping during the nights. Now I understand why the doctor always asks “Is she sleeping during the night?”

Boomerang-Parents

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

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