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 and Another Reflective Easter Sunday

Posted on March 27, 2016 by Lynn Brophy

Easter 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 dementia – Alzheimer’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 dementia – Alzheimer’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.

With 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).

All 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.

Pondering Thoughts Post Alzheimer’s

Posted on January 31, 2016 by Lynn Brophy

It’s been awhile since I last posted. There’s been a lot of pondering, wondering and lamenting, going on over the past year and a half. Not sure if it’s just another stage of working through the grief process or if it’s just me in the “what’s next” portion of life after losing a parent to Alzheimer’s disease. I think that when a parent dies, the first year is focused on the event and the void of that person in your life, not to mention all the firsts…anniversaries, birthdays, etc. A lot of thought goes to “what could I have done differently” and “if only I did this or that” or “acted this way or that way. After that, for me at least, I am thinking a lot about what the next 20 years has in store for me.

Will my life follow a different path than that of my mother’s life or a similar path? Will her dreaded diseases and afflictions be passed onto me? If so, who will be the one to look out for my well being? Those are all tough questions and they come with tough realities. Everybody is different, rightfully so, and we are all on our own journey. What will be for one, will most likely be different for another. So then, why I wonder, am I so unsettled about all of this? It seems to be the natural course of life. Maybe it’s just the natural flow of things as we get older and facing mortality. Maybe I am feeling exactly what I am supposed to be feeling at this stage of my own journey. Maybe at this age, it’s normal to be more in touch with the universe and the processes of life. How do I know…when will I know, or is it all just a crap shoot? That is the question.

Photos: (1) Lynn, me apparently pondering life at 5 years old, with crayon in hand, (2) Mom, Dad, me, Grandparents, Uncle Raymond & Marion Corso, (3) Mom and Dad on a boat, (4) Ragamuffin Lynn, me, on a tree swing at summer camp.

I look back at old photos of my parents and of me when I was a kid along with other family members and it makes me feel good. Even though times were often rough back then, living in a broken home and being poor, I can look back and appreciate all the good that took place in those days as well. I can see it now very clearly now. All the times that I spent at my grandparents house, all the years that my mother had to work hard just to keep a roof over our heads and what it took to keep me fed, clothed and schooled, mostly on her own. She was getting $20 a month child support from my father who very often didn’t pay, but she was a strong lady and she made it work even with her OCD issues. It never even occurred to me back then how hard it must have been on her to have a such rowdy, tomboy daughter who managed to challenge her at every turn. The simplicity of life back then can’t compare to today’s world filled with technology, financial woes and eternal busy work leaving us no time to fully enjoy life in the now. Isn’t that what Ekhardt Tolle says in his book, The Power of Now?

Funny how we never really appreciate what we have, when we have it, in the now. It’s only when it’s gone, with no chance of returning, that we get it, really get it. Is that the same for everyone? Does everyone go through this insanity? I have to believe that we all do at some time or another, because in my opinion, we are so involved in the normalcy of life, the sameness, that a lot of times we don’t fully appreciate the moment we’re in this very minute. We need to get this or that done today, errands, busy work, just stuff in general, and in the end, it’s all insignificant stuff that we won’t even remember later on. I suppose that 20 years from now, I will be looking back at this time and at my health, hoping that I was able to fully appreciate having this blog, going to work and earning a paycheck, having a house and maintaining it, paying bills, being able to get through New York winters while fully appreciating how good that I really have it. Although I truly wish that I could afford to retire like the generations of yesterday, things could be a lot worse. I see how much worse when I watch the news every day. The world is a crazy place. Sadly, simplicity in daily life has long been lost in the past.

Moving forward though…what’s the answer, how do I proceed? Should I simply go with the flow and see where it takes me? Or should I try to work it out creatively, meaning to get involved in some of the creative projects that I have put off for lack of time, energy or inspiration? In the end, I suppose it’s my choice and my unique journey, so I’ll keep thinking, wondering and pondering until it leads me to where I am supposed to be. Hopefully, I’ll know that place when it comes or maybe it will be an unconscious awakening, but regardless I’ll have faith that I’m on the right path.

The First Anniversary. Today is the Last of the Firsts

Posted on September 28, 2015 by Lynn Brophy

Today is the first anniversary since my mother, Eleanor Van Meter passed away from a combination of diseases including Dementia/Alzheimer’s, Parkinson’s and Leukemia. September 28, 2014 marked the beginning a year filled with firsts. The first Halloween, the first daylight savings time, the first Thanksgiving, Christmas, New Year’s Day, Mom’s birthday, Valentine’s Day, Easter, Memorial Day, Fourth of July, Labor Day, etc. I’m sitting here on September 28th, a year later in 2015, reflecting on what this year has meant to me.

I didn’t exactly know what to expect during the first year, but I can see that at least a year is needed to come to terms with a death of a parent. Because the year after a death will always be significant while dealing with of all the firsts, it’s probably the hardest year you will ever go through. The fact that it’s a parent, compounds the intensity even further. I don’t care if parent and child got along well, or didn’t get along well, if they were best friends or estranged or indifferent, the effects of losing a parent are unique, because your parents are the reason you are here on this earth. There’s never been a time since you were born that they haven’t been on this earth, until they pass away. Again, it doesn’t matter if you saw them everyday or once in a year, it’s a powerful event for the child/adult to process and come to terms with. For me, this past year was a time to create a new normal.

Photos: (1) above: Mom, young and full of hopes and dreams, (2) below: Mom (Eleanor) and big sister Lillian, (3) Mom and Lynn (me) in my room at her mother’s house. Contrary to this photo, dolls were not my thing, but it was a gift from my father….soooooo, (4) Mom, a few weeks before her death.

Mom had a combination of a good life and tragic, all rolled into one. When I look at her childhood photos, I see a happy, normal little blonde haired girl who obviously looked up to and adored her big sister Lillian. That feeling had reflected in our many talks over the years. As she matured into a young adult, she somehow started showing symptoms of what we now know to be Obsessive Compulsive Disorder. It was that disorder that was to become the tragic part of her life. She had said that she was sick a lot when she was young, causing her to miss a lot of school events that were important to her. She thought a possible reason for the OCD was in her determination to avoid germs at any cost. She also once mentioned that a bout of strep throat could have been the cause of the disorder, but I suspect we’ll never know the real reason. What I do know, is that this disorder had caused her 2 marriages and a lot of lost joy in life that could have been. OCD held her hostage in a solitary world which finally left her communicating through phone conversations as she got older.

During her working years, which was also something that she aspired to do since childhood, was a success. She had prestigious positions over the years and was able to hide her OCD while at work. For that, I am grateful, because working in Manhattan was probably her biggest childhood dream fulfilled. Through her working years, she met Dwight Van Meter, her second husband and the love of her life. He was 20 years older than her but it was so obvious that it was a relationship that was made in heaven. He passed away in 1985 and she spend the rest of her life mourning him. Strangely, they were married on September 28th, the same date that she died. Coincidence? I don’t think so. They are together again.

My mother was a really good, kind and decent person throughout her life. She raised me the best she could with the challenges that she faced everyday, and with the help of her mother, my grandmother, I became the person that I am today. I can say that I was quite a handful, but in the end, it all worked out well. She worked a lot and I was very much on my own, but it was through her and her mother’s family traditions and morals, that I was able to pull through in tact.

By the time she came to live with me all those years later, she was quite a bit older, very frail, set in her ways and showing the signs of dementia. I didn’t realize at first but after awhile, it became obvious…and even then I didn’t know what was down the road. Dementia/Alzheimer’s disease is an awful thief in the night, stealing your memories and dignity without a concern of the chaos it causes within the brain of the person it’s destroying. While she was here for over the course of 6 years, we were able to have nice conversations, dinners together, watch tv shows, get-togethers with neighbors her age, go shopping…in short, we were able to resolve and make peace with each other in the last years of her life. Not that it all was good times with the challenges of the progression of the dementia, but the good is what I choose to remember.

On this day, September 28th, 2014, things were happening all over the world:

George Clooney and Amal Alamuddin married in Venice.
Volcano in Japan erupted with 30 feared dead.
Baseball season comes to an end.
Kenyan man Dennis Kimetto sets marathon world record.
Air France Pilots end strike after 14 days.
Brigitte Bardot turns 80. Ben E. King and Hilary Duff have birthdays.
Eleanor Van Meter, my mother, got her wings.

July 4th, Another First for the Daughter of a Dementia Patient

Posted on July 4, 2015 by Lynn Brophy

Today is the 4th of July, Independence Day for our country, a time to reflect and celebrate the signing of the Declaration of Independence in 1776 declaring our independence from Great Britain while at the same time announcing to the world that we are our own sovereign nation, pledging to our own flag. My Mother was a loyal and proud American, loved to talk politics, voted without fail every year until the day she forgot what voting was, believed in the American Dream and was grateful to have been born in this country. With that said, today, this first year since my mother’s passing, with yet another first upon me….and there have been many so far this year. I believe that everyone must go through these feelings during that first year after a loved one passes, but I never really thought about that until it directly effected me personally. I mean really, how was I to know about the “first syndrome” until crossing that bridge for myself?

Alzheimer’s disease and it’s associated assorted dementia related diseases are a nightmare for our population worldwide with the numbers of effected people and their families rising daily. Although they are making advances in the medical field for these diseases, it doesn’t help those that are or were effected yesterday or today. Yesterday’s sufferers have left a black void in the hearts of their families and today’s sufferer’s are watching the train coming down the track without even realizing it. It’s just a matter of time before their today becomes their family’s yesterday, leaving them to think about all the “firsts” that will occur during their first year after their loved one dies.

Photos: above: (1) My Mother, Eleanor Van Meter/Sarter at various ages, sporting her Kennedy-like teeth…I always loved her smile, below: (2) Mom, young at the beach, one of my favorites, (3) Mom even younger at the beach, probably Coney Island…quite possibly on July 4th!

What does a person think about on the “first” holidays that occur during that “first” year? Well, for me, it’s all about reflecting back to that holiday the year before, which sometimes, there is no recollection of what we were doing that particular day. I know that I was home because that is where my Mother was and I was not working. Chances are we bar-b-qued, which Mom always liked…but what did we bar-b-que? Who the heck knows…point is, when we are care taking, many times, we take for granted every day that passes in just trying to get through, not really cherishing what is right there in front of you. You are struggling to do the best job that you can while trying to earn a living, manage a household and all the chores associated, all the time enduring the stressful existence that you find yourself in with a loved one suffering from dementia. Although we know exactly in our heads, what the outcome will be down the line, it’s incomprehensible to submit or subscribe to the idea that someday, your loved one will be taken by this life sucking disease of dementia. I guess it’s what’s called denial…ending with the rude reality in the grande finale’…leaving us with a whole lot of “firsts” and non-ending reflections from the past to digest. Did we do a good job in care taking, did we embrace the little things that occurred daily, did we tell them that we loved them enough, did they even know that we loved them… a lot of burden to carry around everyday.

In my case, I am starting the 10th month into my “first year” journey. Not many holidays left to reflect on, yet I know in my heart, that when the first anniversary comes around, my brain won’t magically shut off. If I know human nature…and myself, I will go on to reflect my Mother’s existence on this earth shared with the memories that I carry around, both in childhood and as an adult. I’ll try not to dwell or lament on whether I feel that I did a good job of care taking, or not so much, because in the end, we all do the very best that we can considering the circumstances that we are dealing with. I’ll look back and think about the things that she liked to do, her accomplishments in life and the footprint that she left me with. Really, that’s all we can do.

On this July 4th, give the person you are care taking a big hug…trust me, you will thank yourself later.
Happy Independence Day Mom!

Mom’s Supplies Go on to Help Others with Dementia and Alzheimer’s

Posted on June 14, 2015 by Lynn Brophy

After bouncing off of a great weekend, I’m still basking in the rays of the good feeling in knowing that I was able to help a few people. I didn’t realize that there were so many people out there that need a helping hand while taking care of a parent with Alzheimer’s and dementia. This weekend was very enlightening for me seeing Mom’s unused supplies go on to help others with dementia and Alzheimer’s.

While I was care taking my mother, also with dementia and Alzheimer’s, we found the need to use the adult pull-ups for her. It wasn’t easy at first to get her to agree to use them, but after awhile, she accepted them and put up no fuss, except of course, the effort it took to put them on. During the years, we seemed to get monthly deliveries, which filled my basement with cartons of pull-ups, leaving little room to walk around. Of course she didn’t use them all, as no person in the world could have used the quantity that was delivered to her. When she passed away last September, my basement housed 28 cartons of adult pull-ups containing 4 packages of 20 totaling 80 pull-ups per carton. Now, that’s a lot of pull-ups.

From the get go, my intention was to bring the supplies to the local nursing homes to help some other elderly people. Apparently, after calling around to the homes, I learned that they are restricted and must buy from whichever source they normally order their supplies from and are not allowed to accept donations of that manner. Someone suggested that I call the local thrift stores, but I didn’t want anyone to make money from them…I wanted them to help other people like my mother, as a donation…free.

Finally, this past weekend, I decided to post them on Craigslist for Free. To my amazement, my phone started ringing immediately after posting. My phone didn’t stop ringing all day. I was stunned at how many people are in the very situation that I was in with my mother. They all seemed to have the same urgency in their voice. I knew that I couldn’t help everyone, so out of fairness, I took the first 2 callers, who had their own story to tell.

Photos: above, (1) Mom, during the first week of home hospice, still smiling. right, (2) the infamous pull-ups, below, (3) Mom in bathing suit looking pretty snazzy…happy as a lark.

The first caller, Ed, a truck driver told me that he just recently remarried and that his mother had moved in with them because she had Alzheimer’s. His new wife was care taking his mother, which in itself I thought was incredible, but also a huge stress on the new marriage. He told me that he was having the same toileting issues that all of us caretakers have when taking care of anyone with Alzheimer’s or dementia. Incontinence is not a pretty or pleasant sight and it’s definitely intolerable when finding yourself in the middle of this situation with an elderly parent. Plus buying the adult pull-ups on a regular basis isn’t affordable for everyone either, so it’s a tough situation all around. Ed was so grateful to get half of my offerings which would hold him over for quite sometime, that he gave me a huge hug…he had no words.

The second caller Steve, lives about 40 minutes from my location, originally from Boston, as I could hear in his accent. He also sounded desperate to be able to benefit from the free pull-ups. His mother with Alzheimer’s also needed the pull-ups, who broke her hip and was getting out of rehab the next day. She lives with his sister, who is the caretaker for her. They live in Boston, so he would drive the cartons up to Boston right away for her to use. He was an older man on a fixed budget, who was trying to help his mother and sister in any way that he could. Steve told me how much he appreciated getting the cartons and that he would be going to deliver them to Boston the next day.

For the rest of the day, I spoke with many other people who all had the same urgency in their voice, all caretakers to a family member, all needing the help, all having their own stories and struggles. I was truly amazed and touched at how many caretakers there really are out there, all having the same issues when dealing with this disease. When care taking a parent at home, the people who aren’t lucky enough to get their parent onto a state program to help with aides and supplies, suffer the most. They have no break, no relief and many times must quit their jobs in order to care for the parent. I truly believe that there should be an outlet for some sort of help, physical and monetary, while they are able to go to work to support the household. What will become of the caretakers who don’t have a spouse or family member to help out? What happens if they must stay home without employment? It’s huge problem in this country, and it needs to be addressed. The baby boomers aren’t getting any younger and as we all age, there will be more cases of Alzheimer’s and dementia than ever before.

Something to think about…but for today, I will bask in the wonderful feeling that I was left with in helping Ed and Steve with their struggles. Mom would be happy about helping others like herself.

Remembering My Father on Memorial Day

Posted on May 25, 2015 by Lynn Brophy

It’s Memorial Day, a day to remember all of our servicemen who so bravely fought for this country. We all either know or are related to people who have served…and today is their day to be remembered and honored. In my case, my father and 2 grandfather’s who served as far as I am aware of, one grandfather losing his life to the war. As I am enjoying my long weekend at home, I can’t help but take time to think about what this day is really about.

My Mom and Dad were married a long, long time ago and although the marriage only lasted 5 years, I know that my father went on to love my mother for the rest of his life. I didn’t know him very well since I lived with my mother until I was 15 years old, then went to live with my father at almost 17 years old at a point when I was a wild child. It was a rough time in not ever having a male role model in my life and lord knows he wasn’t used to having a teenager in the house either. We made it until I was about almost 19 years old when I moved out to make my own way. It was neither of our faults really, just the nature of the situation.

Photos: above: (1) Dad’s military portrait, (2) Dad in civilian clothing, below: (3) My Mom & Dad in the early years, (4) another really old military photo of my father, Edward Brophy.

I remember as a child always idealizing my father, carrying photos of him everywhere that I went. Fact is a girl needs a father as he’s the first male role model in her life and will form all the rest of her relationships with men moving forward. As with everyone, I grew up, got on with my life, had my own family and very often, having the same rocky roads, and as the saying goes…history repeats itself. No matter, I am fine, and I think that I’ve turned out pretty well considering the bumps in the road.

My Dad loved to dance, loved his beef stroganoff, beer, a good party, football and loved to watch the old war movies on tv. As with many servicemen, it’s almost as if he couldn’t get his military days out of his heart and soul. His laugh was talked about throughout his whole life because it sounded very funny, almost like a donkey, lol…it made other people laugh too. He was also, oddly enough, rather reclusive and kept within himself for the most part. He had strange beginnings in that his father, my red-headed grandfather, died while serving our country. His Mother, Helen, couldn’t deal with the loss and had a mental breakdown leaving her unable to handle everyday life. My father eventually had to go to live with his cousins who took care of him. I never knew either of my father’s parents, my paternal grandparents and only found photos of them after his death. For some reason he didn’t want to share these photos with anyone.

This past September, after a long bout with dementia/Alzheimer’s, Parkinson’s and finally leukemia, my mother passed away. In the months afterwards, I’ve been slowly going through her papers and journals finding an array of things. One of these things are the above photos of my father. They were hiding neatly behind my original birth certificate, which back then was a letter sized certificate with a newborn footprint along with the usual information, set in a padded presentation folder. I was amazed to find these photos and it was if she wanted me to find them someday when the time was right. I’d say the timing was very good since I am able to post them on the first Memorial Day after her death. Dad has been gone for many years now, after a battle with smoking related heart disease and emphyzema, but I’m sure he would be happy that I finally have found these photos when I did.

Can Pet Therapy Be An Asset In Dementia Care?

Posted on April 5, 2015 by Lynn Brophy

Should caregivers consider having a pet in the house for their loved one suffering from Alzheimer’s or dementia? I would guess that many factors figure into the answer to that question, such as does the caregiver like animals, does the patient like animals, can their house accommodate a pet, will they have enough time to devote to the pet? So many things to consider when making this decision because taking on a pet is basically bringing in another family member. They will need to be fed, cleaned, possibly walked. They will need shots and vet care periodically and of course lots of attention. It’s a big decision for anyone and compounded with dementia care.

In the case of my mother, Eleanor, she was never a huge animal lover, although she had a daughter, myself, who absolutely loved animals. I’ve wanted a dog since the first time I had ever laid eyes on one. It wasn’t to be as I was growing up but I was able to have parakeets and turtles…things that could be in a cage. Needless to say, when I left home, the first thing that I did was get a dog, first a Great Dane named Hannibal, a year later a 3 lb. Chihuahua named Tinker-belle aka Stinky…and then later, another Great Dane named Kwincy. You can read about Hannibal, Kwincy and Stinky here: http://lynnwho.hubpages.com/hub/chihuahua-toy-dogs

It was probably the happiest time of my life as I remember it. Of course the kids had lots of other animals over the years, but our house always had a dog. As the years went on, they of course passed away…when the last one, the Chihuahua named Stinky finally passed, I was so crushed that the family talked me into taking on 2 new Chihuahua puppies, Daisy and Peanut. Not sure I was ready to start over, but I did it anyway and it turned out to be a very wise decision. They were with me for many years, through thick and thin, with one still alive by the time my mother finally came to live with me.

When Mom came, she was already in the throws of dementia, although I didn’t realize it right away. After awhile however, it was very apparent, although she was at the beginning of the disease and was able to stay at home during the day when I went to work. She was not a danger to herself at that point. She functioned well, although was recuperating from a broken hip and was a little paranoid and forgetful. When I left for work, I was usually gone from the house for 12 hour stretches, having 2 hours of commuting time. It was a long day for Mom and for myself. Daisy was there with her during the day and they formed a close bond. Daisy was very respectful about not invading her space, which was a relief. They were 2 old girls being respectful of each other and coming to depend on each other at the same time. My mother enjoyed her company and didn’t feel alone in the house, and Daisy looked forward to the little treats that Mom would give her during the day…and also being let out back at mid-day. It was a really perfect situation, in that they helped to solve issues on both sides.

Photos: Top: (1) Tonya laying in the sun on her chair in the window, (2) Mom looking happy and healthy, (3) Hannibal looking very regal, (4) Stinky the Chihuahua at 14 years old, Right: (5) Hannibal and Kwincy lounging outside, (6) Mom and Tonya

Finally, Daisy passed away at home, at 14 years old. My mother didn’t realize it since she was in bed, still sleeping when I woke up that morning. Of course, I had to tell her…and she was crushed. She made a sound that I will never forget, a sound of complete hurt and loss. She started to cry and was sad for a long time afterwards. I framed a nice big picture of Daisy and put it in her room to remember her by. It helped to keep Daisy alive in her mind. About a year, maybe a year and a half later, I bought a few parakeets to bring some sound and life into the house…and that it did. Parakeets are very noisy little birds and fascinating to watch. I kept them in the kitchen, which is where my mother loved to hang out during the day. I can remember that she would spend hours in front of the cage just whistling at them trying to get them to chirp back, which they would accommodate. I could tell that their presence changed Mom’s behavior, in that she perked up from the void that Daisy had left in the house.

About two years after that, I ran into a rescue truck at the local pet store and fell in love with a terrier mix that American Airlines had flown in from California. Her name was Tonya and before I knew it, I had brought home a little girl who needed rescuing. I wasn’t sure at all how this would work out because Tonya wasn’t used to us yet and if the door was opened, she would dart out running as fast as a Greyhound. That in itself made me a little nervous, but in the long run, it all worked out. After while, Tonya became very close with Mom since they were home together all day long. Just as with Daisy, Mom would give her little treats during the day and they would become inseparable. It wasn’t too long after that when Mom started to decline in her dementia, needing a home health aide. Once Cardine, her aide came aboard, Tonya got attached to her also, but would forever be Mom’s protector with anyone new who came into the house.

Tonya knew when Mom was declining and protected her even more so, laying by her bed all day, sleeping under her bed. After about a year, when hospice came in, Tonya knew exactly what was happening at the moment of her death. Dogs are very aware and in tune with things like that. She cried when it was actually happening. From then on, she slept alone in her room for weeks. I didn’t know until later how lonely my mother was, until I found some journals that she had written after Daisy died. She wrote a draft letter to her best friend Noreen about how lonely she was after Daisy died but felt better when the birds came, because it brought life into the house and we all knew that she loved Tonya as well.

Bottom line for my situation is that having pets in the house was a great thing for my mother. There was no debating about me going to work every day…we needed a paycheck. So, having pets helped to fill the void in her day and gave her someone to look after, giving her a purpose. I think everyone’s situation is unique and different, so a decision should be made on that basis. But in the end, I’m a fan of having pets in the house when caring for a dementia or Alzheimer’s patient.

Art Therapy for Seniors With Dementia Can Be Beneficial

Posted on March 29, 2015 by Lynn Brophy

With all the other struggles that my mother suffering with dementia had faced, I always found that when she was in her creative mode, she thrived. Her creativity seemed to blossom as she began her decent into dementia and there were times that it kept her busy for hours during the day. That’s not to say that she didn’t get creative before dementia, she did, but I think that her life of working, left her with no time for much else. Now, at this point in life, I believe that art therapy for seniors can be a wonderful thing.

When my mother lived in San Diego, over the years, she would send cards for special occasions that always had her special touch on them. Sending store bought cards as is, just signing her name at the bottom wasn’t ever good enough for her. She always had to make them just a little bit more personalized, more colorful and more special for the person receiving the card. She wasn’t able to buy expensive gifts, but her cards were an envelope full of love, thoughtfulness and happiness.

After she came to live with me, she of course didn’t send any more embellished cards, but while she was able, she would make little cards and notes with her colored markers and white paper, always trying her best to put thought into what she was saying, which you could see became a struggle for her after awhile. But it didn’t matter, she still shined through in spite of the struggle. One autumn day while I was at work, I came home to find brown paper bags cut into the shape of leaves and scotch taped to white paper. There were even 2 that were reversed, showing the brown paper through the diecut in the white paper. I thought that they were so creative considering the stage of dementia that she was stuck in, that I hung them on the wall in her room, just as you would your child’s artwork. I was glad that she was still able to engage herself into something artistic and follow through to complete the project. She was making a connection with the brown leaves falling from the trees outside her room and created something out of that thought. It was child-like, but just knowing that she was able to do that in her steady void, made me happy.

Photos: Cut out leaves from brown paper bags taped to plain white paper made by Eleanor Van Meter, Eleanor Sarter, in the throws of dementia. Good job!
Below: Mom looking very young and pretty with her whole life ahead of her. Who knew what the future was to hold for her?

Some days while her Home Health Aide, Cardine was here, they would sit and color together in the afternoons, when the sun was coming in from the back of the house where her bedroom was. Cardine would encourage her to do puzzles, games and various other things but she really seemed to get a kick out of putting color on paper…or clothes…or sheets or her blankets, haha. After awhile she would just put her markers on anything, which isn’t really where I wanted her to go with this, but after all is said and done, if it made her happy, why not.

She liked to have notebooks and purple and pink pens where she would try and create characters for a children’s book that we had once planned to write together. Since she was the writer in the family, she was going to write the story and I was going to do the illustrations. Of course, we never got to that point, she’s was no longer capable of doing that, but I still have hopes in trying to write that little children’s book, with the help of her ideas that she had left me with. Why purple and pink, I’ll never know, but it occurred to me on how ironic that purple is the also Alzheimer’s color…very symbolic. Once a dementia patient gets fixated on something, far be it from me to try and change their mind….she wanted purple, I found all sorts of purple pens for her every time I went out.

She was also once, a very good poetry writer and had folders of poems that she had written in the past. She would look over them for hours, organizing the pages and just staring at each page and I know in my heart, that she wanted to write more poetry, but her brain wouldn’t cooperate, which I found very sad. Even though she wasn’t able to write, she wasn’t done yet! She still had that need for creativity in all different forms, but she was no longer able to handle anything more than scribbled color on white paper. What can be sadder than losing brain function and knowing it’s happening to you? I know that she knew because we had talked about it at times. She knew it was happening…how awful to know the things that you want to do and say, but not being able to do it?

So, what I have learned from caring for my own mother with dementia, my advice for caregivers of Alzheimer’s and dementia sufferers would be, to get them involved with the creative world, in direct line with the capacity that they are able to handle without getting frustrated. There are so many different forms of creativity that can be introduced to them…there is something for everyone. It doesn’t have to be complicated, but just something simple where they can express themselves and will make them feel as if they accomplished something. There are special programs out there that focus on music and art therapy for seniors. Some actually come to the house for home bound patients and others can be found in adult day care facilities. You can research this for your own area, or you can set up your own ideas with your family member since you know them best. With stores like Michael’s and Joanne’s
Fabrics, there are all sorts of ideas for simple projects to try. It stimulates and challenges their brains, which is very healthy for people in brain failure. It can help to slow down the progress of the disease, plus make it a good day for your loved one. And we all want a good day!

Does Food Taste Good To Dementia Patients?

Posted on February 28, 2015 by Lynn Brophy

Alzheimer patients often have different preferences for foods that they might of had before the disease came on. Their tastes can change slowly or abruptly as the disease progresses, but either way, it is disturbing to the caretaker. That is the case with my mother and it put me into a tailspin, worrying that she wasn’t getting the proper nutrition.

Now when you think about it, that’s a crazy thought because they are still adults, right? They really are not 5 year old children who haven’t tasted certain foods. They’ve had a lifetime of eating and tasting creating their preferences for certain foods and a dislike for others. It’s their right not to eat what they don’t have a taste for…they don’t like it…it doesn’t taste good to them. We are all different…right? Food should taste good, right?

Well, it turns out that Alzheimer patients taste buds change as they progress into the disease. What they liked yesterday is not necessarily what they will like today or tomorrow or the next day…their tastes change. With that, it stresses out the caregiver because we are there to do the right thing for our parents. After all, we are THEIR parents now and they must listen to us because we know better…. Heck, we love to eat broccoli and spaghetti with sauce with parmesan cheese on top and my Mom used to like it too…so why doesn’t she like it now? Why is she not eating her cookies anymore, raiding the cookie jar every time I turn my head? I once called her the cookie monster. I also used to give her medication with pudding or yogurt and the other day she spit it out…at me…. with a sour puss on her face. I insisted that it tastes fine…and that she’s been taking her pills like that for a long time with no problem…so why now is she acting so vile? Because their tastes change as they progress into the disease…finally, I got it!

Last week, I found Teepa Snow who teaches and lectures on the behaviors of Alzheimer’s patients. She educates caregivers, while explaining how the Alzheimer’s afflicted person is experiencing their disease. I found her lectures amazingly informative, feeling that any caregiver would benefit from viewing her videos. She has a website and her other videos are also found on: https://www.youtube.com/. The first video that I listened to, I posted on the Boomerang-parent’s Facebook page. Here is the link to Teepa’s video that I first listened to that finally made sense to me: http://www.alzheimersweekly.com/2014/05/sweet-food-bitter-pills-dementia.html

Teepa says that their taste of sour and bitter becomes stronger than before…therefore they start putting more sugar in coffee, eat more sweets, etc. She gives all sorts of scenarios that all caretakers face with dementia patients. She suggests that crushing their pills in apple sauce is the worst thing you could do because it makes the already bitter pills, more bitter in the apple sauce. She says that jam would be the better choice to get them to take their meds. Also, did you know that putting crushed meds in pudding or yogurt really doesn’t work either…not really…because of the smooth texture. Makes them want to spit it out because they feel the crushed pills in their mouth…which my mother actually did. Why didn’t I think of that…..? There is so much more in this video, including humor…a lot of light-hearted humor…definitely worth the watch.

It all became so clear and understandable…of course….why didn’t I see that before? Probably because I was in the middle of the situation with blinders on. It makes so much sense…and I felt relieved having seen it. Finally something that explains what is happening before my very eyes. I may not like it, but it’s the facts Ma’me. Teepa gives very good suggestions on how to get around the altered taste buds and as glad I am to know that now…I wish that I could have seen her video last summer in 2014 where I could have applied it to my Mother’s symptoms. I could have made her life so much easier if I knew these simple facts, and would have saved myself a heap of worrying. Hopefully, I can help to pass this info on to others.

Boomerang-Parents

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

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