Remembering Mom, Our Struggles, Our Blessings and Dementia on the First Mother’s Day After

Posted on May 10, 2015 by Lynn Brophy

It’s been 8 months since Mom passed from her dreaded diseases and the first Mother’s Day since, is upon me. At this time, I can’t help but reflect on our relationship over the years, both with dementia and before dementia and Alzheimer’s worked it’s evil magic.

My mother, Eleanor Van Meter, had always wanted a career, going as far back as her childhood. Some kids dream of being married with kids and others yearn to be in the business world, in the big city, as in the case of my mother. As a matter of fact, we had that very discussion after she came to live with me. She admitted that motherhood and having children wasn’t on her list of things to do and that working and career had been her big dream in life. But, as fate would have it, “oppsey”…I came along, much to her surprise. I’m sure my arrival put quite a damper on her plans in the business world but she stepped up and made the best of it, dealing with it in the best way she was able at the time, with the help of her parents, my grandparents. I think that even with all the adversities and bumps in the road throughout the years, I turned out okay. That means to me, that she did good!

Photos: above: (1) Mom and Me, on vacation, (2) Mom and Me at a few months old. Below: (3) Mom and Me at Greenwood Lake, (4) Mom with her grandchild Shad

I remember that conversation as if it were yesterday, although in reality it was about 4 years ago. She was already in the throws of dementia but it wasn’t at the crippling stage at that point, so thankfully, our conversations were both informative and memorable. Even though nobody would especially choose to hear that kind of news, I wasn’t surprised, nor was I resentful. I guess, I kind of sensed it as I was growing up. Looking back at childhood, there wasn’t a time that I can remember that Mom wasn’t working in NYC at some big company, leaving in the early morning and arriving back home at night. I was alone a lot, coming and going pretty much whenever the spirit moved me. Everybody, including my mother, was entitled to live out their dream and although life wasn’t easy back then for either of us, she adequately provided for me. We were far from well off financially and there were times that I walked around with holes in my white keds and looking like a ragamuffin compared to my friends, but hey, that was the style back then…bobby sox and keds with holes in the toes! It’s ok…I was never hungry and always had a roof over my head. Also, a lot of time was spent at my grandparent’s house and I loved being there too so it was all good. They didn’t work and I felt very comfortable with the dynamic and normalcy of that household, which I’m sure, is part of the reason that I am as normal as I am today.

As a kid, I recall meeting Mom every night at a designated spot after she got off the train from work and we would go to eat dinner out together. We would go to Jahn’s, get Chinese take out, sit at the Hamburger Express and watch the train deliver our burgers or just get a pizza. We didn’t eat home much, which probably accounts for my lack of expertise in the kitchen and my disinterest of home entertaining! I could choose to look at this in one of two ways….one, we were so different than my friends who had home cooked meals every night, boo-hoo….or two, none of my friends got to eat out every night, so I’m pretty lucky! I chose the latter way to think of it! Actually today, I almost never get to eat out anymore, so it’s looking pretty appealing to me!

I have memories of Mom trying to wake me up in the morning to go to school…probably around the grade school days. She’d come in my room full of energy and determination, singing “You’ve got to get up, You’ve got to get up, You’ve got to get up in the morning”. It sounded like an army style thing with a bugle, something that she might have picked up during her growing up years…but I can remember her singing like it were yesterday. After the song, she would bring in a cup of tea, sometimes different types of tea such as Earl Grey, Darjeeling, Oolong or English Breakfast tea. She is the one who introduced me to tea and the different varieties that I still love to this day.

I also remember the day I turned into a girl from a tomboy, as we stood in front of the mirror in my bedroom trying to figure out how to make my hair into the perfect Flip with a headband, just like Patty Duke’s hair. The headband style loomed large in my transformation as I recall. Even though we were not like most mothers and daughters, she tried to do good things for me as best she could as I was growing up. It wasn’t easy either since I was quite a handful being a hyperactive child with very rebellious tendencies.

As adults, our relationship was mainly by phone since she had moved to California back in the 70’s. In California, she married the love of her life Dwight Van Meter, and I was living life hippie style on Long Island…Age of Aquarius! We sure did go through a lot of stages through the years. But we had great conversations, mostly on Sunday nights just as her and her own mother once had in adulthood. We talked about everything, the happenings of the day and week, the dogs and their antics, about her job and books that she might have read. Later, we talked about writing and illustrating a children’s book together, which never came to fruition, although, I’ve considered following through with writing it in her memory. There were a lot of little things that were left unsaid due to her disease that I now wish I had said, but even though, I feel that we did come to terms together with our relationship…and she came to terms finally, with her OCD disorder that crippled most of her life.

No, life wasn’t perfect…she wasn’t a perfect or typical mother and I wasn’t a perfect or typical kid, we were just human. BUT…she was my mother and I was her kid and we both did the best we could in an imperfect world with the cards that we were dealt. I don’t have a lot of early memories, but I will remember her by the ones that I do have. Our time together this time around didn’t come with huge, monumental happenings and events, we were simple people coming from simple beginnings living a very simple life. Hopefully, through the years, little memories of the past will come back to me and I will consider them a visit from my mother.

Happy Mother’s Day Mom, wherever you are!

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.

Friendships Make Dementia Sufferers Feel Connected

Posted on April 19, 2015 by Lynn Brophy

Thinking of Mom today on this beautiful sunny day in April. Just a year ago, she was here, in my house, shuffling around, swiping cookies when nobody was looking. I got to wondering about friends and if she had many in her lifetime? I know she had a few friends while she lived with me, but did she have any when she was living on her own in California? I tend to think not, with her OCD affliction and the onset of dementia, which can make people rather reclusive and paranoid. I’ll probably never know the whole story but I am glad that she did have a few friends, that I know of. Friendships make dementia sufferers feel connected.

Photos: above, (1) Young girl Mom, Eleanor on the right, (2) Cookie Monster, Mom sneaking a cookie…sort of.
below right, (3) Mom on the phone with Noreen looking very happy and content, (4) below, Mom with Gene and Eleonore, our neighbor friends.

In childhood, I know that she had friends, since I do have a few very old photos of her posing with a friend as in the photo above. Mom is the girl with the bow in her hair, at a time when life was so innocent, promising and new. She looked happy with that little friend of hers and although I don’t know the girl’s name, I’m sure they had fun times together.

When my mother moved in with me from California, she soon started having regular phone conversations with Noreen Barsh, a long-time friend from her working days in New York City. As she told me, she actually hired Noreen back in the day and they soon went on to become great friends which had carried on through the years. I remember hearing her talk about Noreen on our Sunday night phone conversations but I never knew very much about it. She kept pretty private about things, not sure why, but I think that was just part of her personality. Once living here though, it became very apparent that they were wonderful friends, speaking on the phone for at least 2 hours at a time. I was very grateful for Noreen as she would be a extremely grounding force for Mom once dementia started taking hold. Even in the last year or so, when Mom was losing her words, it was no matter, Noreen would just talk and talk and Mom would just listen and listen. Sometimes, she would even start speaking back to her, which made all of us scratch our heads in wonder. It would take a friend like Noreen to draw her out of her void, maybe from recognizing some of the old experiences that her good friend spoke about. Noreen knew it was important to speak about old times with her, knowing that she just might remember way back when…and sure enough, it did work. Noreen would call her every single weekend until her death, even speaking to her in her last day, lying in the home hospice bed while unconscious, I held the phone to her ear while she said goodbye to her old friend. She was a loyal and wonderful friend, right until the end. I still call Noreen these days once in awhile to check in on her, as she is in the same age range as Mom, in her mid to late 80’s. I value our conversations now that Mom is no longer here. She is a constant reminder to me that Mom had a life once, working in NYC, having lunch with her good friend at the automat, no doubt! The automat was a very popular place in New York City back then. I remember, she even took me there once, as I have a vague memory of it. Mom once, had a nice life and that thought makes me very very happy.

While my mother was with me, dementia started taking hold in what seemed like over night, but in reality only a few years before becoming unmanageable, I would make a point of having our neighbors over every once in awhile for a pizza and conversation and Mom would actually get dressed up and join us, which was the whole point. My friend Eleonore Zeger and Gene, our neighbors across the street, also my good friends, are Mom’s age. Mom’s name also happens to be Eleanor, so it would get a little confusing sometimes, but it added a few laughs along the way. Eleonore, really liked Mom and would come over during the week to look in on her while I was at work. She would bring her little gifts and sit to talk with her to get her mind working. Mom loved seeing them and would sit and listen to everyone talking back and forth, even joining in once in awhile. I was so grateful that she would come out of her room and join us, because it is so important for people with dementia to feel needed and a part of something. Little get togethers would definitely make her feel like she was needed and wanted, a part of something fun. She would even sit and have a little glass of wine, although she didn’t really drink much these days, it did made her feel included.

I guess, today, I am thinking about all of this because of Spring’s arrival, a time of rebirth, regrowth and renewal…another season, new beginnings, a second chance to make it right. It’s a time to get things done, be outdoors, socialize, reground and revitalize yourself until the throws of winter return. After a very sad fall having lost Mom to dementia and leukemia and a particularly long and nasty winter, spring is being welcomed by all, especially myself. It’s a time for friends and a time to welcome new friends and long lost family. It’s a time to reconcile and come to terms with what is, the cycle of life with all it’s joys and sorrows, never forgetting those that we have loved who have passed.

Reconnecting With Family, Hoping That Mom Can See, Dementia Can’t Stop Her now!

Posted on April 12, 2015 by Lynn Brophy

Thinking of Mom today after meeting with her niece and nephews, minus one, David, my first cousins for the first time in many years. Towards the end, she didn’t remember them, due to her dementia, heck, she hardly remembered me… but before her dementia took hold, it was more than obvious to me that she loved them very much. They are the children of her only sister, who she loved deeply, who tragically passed away from Leukemia, many years before.

When Mom was still alive, I had always wanted to take her to the cemetery where her parent’s rest. Her thoughts were always with her mother and sister. Not sure what happened with her personal memories of her father, but it was very obvious that her connection with her mother and sister were strong. She spoke about them a lot, daily, telling me stories that I had never heard. Telling me of her life, which I would have no other way of knowing. Sometimes, the early stages of dementia get them talking about their life, that quite possibly, they wouldn’t otherwise speak about.

Unfortunately, the opportunity never presented itself for me to take Mom to the cemetery. She couldn’t accept realistically that her parents were gone. I still have regrets for not pushing it, but pushing things with her presented it’s own problems. We all know, that if a dementia person doesn’t agree to do something or think about something, there will be hell to pay if you try to make them…so I conveniently let it slide. I have regrets now, even though I know in my heart that they are all together now…which is at least how I rationalize the whole situation at the end of the day.

In any event, meeting with my cousins was a very nourishing event for me, it gave me life energy…a connection to people who are now gone. They are my past from people who are no longer here…my only direct genetic links to my mother and grandparents. As children, we saw each other about 2 times a year when they came to visit all the way by car from the west coast in WA. Having no siblings myself, I loved seeing them and always felt very connected to them. Needless to say, over the years, people grow to adulthood and marry, have families and because there were so many miles between us, life went on, individually. I am thrilled that we are reconnected as a family, and I hope to keep that connection moving forward.

Photos: Top, (1) Mom (Eleanor) and her sister Lillian, with their parents back in the day, (2) 1960 version Back Row, Cousin Mike, Grandfather, Cousin Sam, Uncle Bob, Grandmother, Great Aunt Freda, Front Row, Cousin Maggie, Cousin David, Lynn (myself) (3) 2015 version, Lynn (myself) Cousin Maggie, Cousin Mike, Cousin Sam

There is one cousin, named David that separated from the family many year ago, moving to a distant state, and to this day remaining silent. It breaks my heart to know this because I felt that we were close as kids…at least we were during our visits. I am hoping someday, that I can reconnect with him as well. then my journey will be completed.

Mom would have been so happy and proud to know that we kids, no longer kids of course, are reconnecting as adults. Our family has had so many road bumps through the years and finally, something good is happening at the end of the rainbow.

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!

Should You Consider Adult Day Care For Your Aging Parent?

Posted on March 8, 2015 by Lynn Brophy

Are you considering sending your parent to Adult Day Care? It’s a hard decision to make with so many considerations. You must go to work everyday without worrying about your loved one constantly…are they okay, are they roaming outside of the house, are they a danger to themselves and to the house?

If you are lucky enough to be a stay-at-home caretaker, then you are one of the lucky ones, although some might not think so. Going to work while care taking a parent with Alzheimer’s or dementia, can be a painful and overwhelming dilemma, leaving you mentally exhausted and leaving your boss at work, scratching his head. Frankly, you aren’t able to do either of those important jobs well because your main thought everyday while at work is about what is going on at home with your parent while you are not there.

If they are nearing the stage of being a roamer or wanderer, then you are really in trouble, since they can get seriously injured, lost or create a dangerous situation for others while out of the house. If this happens a lot and you don’t have understanding neighbors, they can report this activity to the Adult Protective Services, which is also not a good thing. At some point, we all come to the reality of the situation, which is that we can’t leave them alone in the house anymore because they are a danger to themselves. It’s easy to find yourself in denial about your parent’s progression in this disease. It’s not easy to admit that they won’t be the person that you remember and it’s very sad. But, when it becomes so obvious, or something bad happens to make you know exactly that you must take action…that’s when we start researching our options.

In my life, I found myself in this same situation. For the 5 years before, my mother with dementia was able to be home alone without an issue or concern while I went to work. Everything seemed perfectly normal…then, what seemed to be overnight, she started to mentally decline and was leaving the house in search of her mother, or to look for an apartment, or look for a job. The first time it happened, one of my wonderful neighbors brought her home. Then on another day, she left the house, in search of lord knows what, was on the main road when another kind neighbor saw her talking to a complete stranger who had pulled off the road to help her. Again, the neighbor brought her home and called me at work to alert me. The last time it happened, she walked about 2 miles from the house, when one of my neighbors spotted her while on her way home in the car. She of course pulled over and brought Mom home. When I got the call at work that last day, I had to literally break into a meeting to tell my boss, the CMO of Marketing, that I was leaving for the day. I just told him…see ya…gotta to go. It happened that fast.

Photos: Eleanor Van Meter on her first day of Adult Day Care looking happy and ready
for her day…getting on the Van that came to pick her up.

From there, I had to research our options, which lead me to a social worker through the Visiting Nurse Service network. Through working with her, she was able to get me onto the fast track for financial aid to affording Adult Day Care. We got her into the local Center in my area, which I knew a neighbor had used for her mother a few years before. It came highly recommended and I felt secure in leaving my mother there while I was at work. Only one thing…Mom didn’t take to it. She consistently tried to leave the building, so an aide had to be assigned to her in order to keep her there. Of course Mom was very argumentative at that point of her disease, so it became a difficult situation. After a few weeks of Adult Day Care, I had to try and find another way to keep her safe while I was at work, as I was having to leave work everyday to pick her up early. She was a handful.

As it turned out, we were able to get her a home aide, Cardine, who became the angel in our lives until her death last September 28, 2014. She was with us for a year and a half giving my mother exceptional care 5 days a week. Every situation has a different solution. Some people take very well to Day Care and others like my mother didn’t. I definitely recommend giving it a try. They have all sorts of activities, arts and crafts, music, games, mealtime, plus they have a chance of developing friends and having somewhat of a social life. Social life in itself is an important consideration because it’s so important to keep their minds engaged with this disease. There are doctors and nurses on staff if they are needed, god forbid. I found the staff to be very compassionate and caring which was a comforting. Whatever works best for your situation is the way to go. There is no straight answer..not one size fits all when it comes to Adult Day Care. I hope this helps you.

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.

Home Health Aides For Dementia Patients Can Be a Wonderful Thing

Posted on February 15, 2015 by Lynn Brophy

Taking care of a parent with Alzheimer’s disease or dementia can be very challenging and also exhausting for the caretaker. I was many years into it before I realized that I needed the help of a Home Health Aide. I was lucky, the first timeout of the gate with Cardine. She was the first Home Health Aide that was send to help with my mother suffering with dementia. She became my hero very quickly.

When first taking on a parent with dementia, we go through so many different feelings and experiences, that often leaves our heads spinning and feeling frustrated all at the same time. Many of us don’t have a healthcare background or any resources at our fingertips to help us cope and make sense of the situation that unfolds before our eyes on a daily basis. Really, we are flying blindly into the path of the oncoming train, sometimes, not understanding what’s ahead.

When I first took on my mother, after moving into my house from her California apartment, I noticed a few little things, but like we all do, it’s brushed off as “oh, she’s just getting older”. After awhile the symptoms get worse and we know that something is very wrong. After we seek a diagnosis, we start our journey into the unknown with our loved one. Life for your parent will never be the same and for you also. It’s almost like when you become a first time parent, changing your life forever, only this time it’s with an unhappy prognosis.

For years I took care of Mom and we went through all of the different stages that most dementia patients and caretakers go through, paranoia, accusations, hiding their belongings, aggressiveness, depression, sadness, incontinence, denial, lack of interest in daily hygiene, preoccupation in trying to make sense of paperwork, confusion, wandering, getting lost, looking for her mother, loss of words and substitution of words, etc. There were so many more things that I went through with her, and since we are all living individual experiences, I’m sure others have gone through even different things that I know nothing of. My situation with Mom, finally came to a point where I could no longer leave her alone while I was at work because she was a safety hazard to herself and others. That’s when I started researching and got the social workers involved, finally getting on the right track in finding a Home Health Aide for Mom.

It was a long road to learning what to do in order to get help at home, but through Mom’s doctor, who had earlier applied for the Visiting Nurse Service to come to give her B12 shots every month, I was introduced to the social workers of that organization. Since her condition was becoming a safety issue, we discussed our options through meetings and house calls. Of course, I couldn’t afford to go out and hire a Home Health Aide on my salary, so I was naturally feeling very stressed on how to bring help in. Working was something that I must do in order to survive, it’s not debatable as with so many caretakers in the same situation these days. It’s a huge dilemma for all involved.

Needless to say, we found a way and soon thereafter, Cardine arrived. She was the best thing that had every happened to us since Mom came to live with me. We were so lucky to have her as she was experienced, compassionate, concerned and very good at her job. She was mentally present at all times, always putting my Mother’s best interest first. I was very relieved that we were so fortunate to have found her.

Cardine had 12 hour shifts, 5 days a week making it possible to commute to my job and keep the roof over our heads. She would take care of every need that my Mother had, personal hygiene, meals, bathing, companionship, arts and crafts, interaction and keeping her mind engaged and active. She was a one woman band and a rock star in her profession. While I was at work, I was absolutely sure that my demented Mom was in good hands and also safe at home. She wasn’t lonely, and she was content and well taken care of. What more could I ask for?

Photos: (1) Cardine on Mom’s 86th birthday, (2) Cardine drying Mom’s hair after a shampoo, (3) Cardine and Mom, Eleanor Van Meter doing puzzles together.

Home Health Aides are a wonderful choice for your loved one.

Bottom line for me, Home Health Aides are a wonderful choice for your loved one. If you can find the right fit through an agency, it will change your world and that of your parent.

They will make the quality of life for the patient and the caretaker better, giving more time to enjoy with your loved one. If you find yourself in this situation, reach out to a social worker through agencies in your area. Reach out to the Alzheimer’s Association who can advise you further. Call the physician caring for your parent, who can open many doors. Although it may be different for others, In my experience, if you don’t ask them, they won’t offer any open channels for help in the home. You must present your needs and concerns to make it known that it is a safety issue. They will then advise what avenues and options are open to you. There are ways to provide a loved one with a Home Health Aide if you are financially unable.

How To Speak To A Person With Dementia

Posted on February 8, 2015 by Lynn Brophy

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.

(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.

Boomerang-Parents

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

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