Monthly Archives: April 2015

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

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Eleanor_Sarter_Lynn_5  Eleanor_Sarter_Lynn_3

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

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

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

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

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

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

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

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

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Friendships Make Dementia Sufferers Feel Connected

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Eleanor_friend  cookie monster

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.

Eleanor-noreen

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.

Gene-Lynn-Mom-Eleonore

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.

 

 

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

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Sarters_young

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.

sarter-mccracken_63  April 9 2015

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.

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Can Pet Therapy Be An Asset In Dementia Care?

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Tonya_window  Mom

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

stinky Hannibal 1It 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.

Hanni_kwincy 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.

Mom_Tonya1Tonya 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.

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