Each year, LBDA recognizes a volunteer who exemplifies a deep commitment to advancing our mission of education, outreach, and support for those affected by Lewy Body Dementia, their caregivers and families. For 2023, we are thrilled to honor Tim Perkins as our Volunteer of the Year.

Tim has been a Lewy Buddy since 2022, offering support and guidance to many individuals navigating the challenges of an LBD diagnosis. His journey with Lewy Body Dementia began eight years ago, and he vividly recalls the day his life changed. “It was a Wednesday,” Tim reflects. “Our whole world stopped.” He was advised against searching for information online, a suggestion he admits he ignored. “That was the first thing I did when I got home!” he laughs.

Tim’s initial internet search led him to LBDA’s website and eventually to attending one of the support groups. This small group of people who knew what he was facing provided him with resources, information and was a tremendous source of comfort at an uncertain time. “My whole world changed that hour…I was so scared, but by the time I left, I was no longer scared, and I have not been scared since.”

In the LBDA support group, Tim learned he could lead a full and meaningful life with Lewy Body Dementia. This includes maintaining a healthy lifestyle through diet, sleep, and exercise, but Tim believes having a purpose is the most important aspect of living well. “You have to have purpose!” he says earnestly.

Embracing this philosophy, Tim joined LBDA as a Lewy Buddy and has helped many individuals navigate the uncharted waters of LBD. His passion for helping others is evident in his work. “I love helping people and knowing that I am making someone’s day a little easier,” he says. As if on cue his phone rings and another member of the LBDA community is calling.

Please join us in thanking Tim Perkins for his years of service and his unwavering support for LBDA. His commitment to helping others embodies the spirit of our organization and we are proud to recognize him as our 2023 Volunteer of the Year.

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The Lewy Body Dementia Association 2022 Volunteer of the Year is Helen Bundy Medsger.

Helen’s story is a unique one. Helen has had three first-degree relatives impacted by Lewy body dementia (LBD) throughout her life and was the primary caregiver of two of these relatives.

Her first encounter with Lewy came early in life, as she supported her father through his challenging journey with the disease at a time when LBD was still widely unknown. In fact, the diagnostic criteria for LBD was not released until the year he passed. Helen experienced the struggle that so many face as they seek an accurate diagnosis for their loved ones. Wading through complex conversations with healthcare professionals, she fought to advocate for his needs and quality of life at a time when his needs were not generally understood by those in the medical field. Six years later, her sister Maureen began to show signs of the same terrible disease.

Professionals assured Helen that Maureen’s changing behaviors were likely attributed to the ‘nature of growing older as a woman’ – menopause, and subsequently, depression. She was prescribed anti-depressants, and instantly saw adverse side effects. Helen and Maureen began “pounding at the health system – [Maureen] needed more testing.”

Their efforts were not in vain. With neuropsychological testing approved, they could move forward. The results were anything but positive. Now, officially diagnosed with Lewy body dementia, Maureen would turn once more to Helen just as their father had. She asked, “Will you walk this path with me?”

For Helen, this was not even a question.

She knew that something needed to change, though. Her first experience as a caregiver had taken a toll on her, and she knew she couldn’t do it the same way again. “By the time my dad passed, I was not in good shape at all.” She told herself, “You’ve got to do this differently, Helen,” and she made sure to create a village of care, mentorship, and support around she and Maureen as they navigated their journey together.

Helen’s experience as a caregiver and advocate for LBD coupled with Maureen’s keen ability to articulate what she was experiencing; whether it be hallucinations, delusions, or another symptom of the disease, empowered the sisters in their 15-year walk with Lewy. After their father, the two knew that the best medicine for Maureen was to stay physically and mentally engaged. They became involved with the University of California San Francisco Memory and Aging Center, participating in invaluable research and sharing their story to help raise awareness of the disease and its management amongst others.

Helen would coordinate transportation with her sister’s neighbors so that she and Maureen could participate in activities outside the house, such as water aerobics. They attended water aerobics three days a week until she went into care, where Maureen would reside for the last three years of her life.

Even as Helen speaks about her efforts in the Lewy body dementia space, she reflects on the power of Maureen’s continued influence. Helen knew from caring for her father what the future held in store for Maureen, and she decided early on to focus on creating moments of joy for the two of them during the time they had together. Every research trip was coupled with one for pleasure, and the photos from these trips remain some of her most cherished. “Every day my role is to bring her joy. If I can make her smile, that is a gift, but if I can make her laugh? That is the best thing I can give her, and it is a gift to me at the same time. We laughed a lot.”

She advises others living with Lewy to find happiness in the little things. “I stress to people; this is going to be a marathon. There is no sprint in this – you have to pace yourself. There are going to be hills and valleys, and they are going to be rocky.” Focusing on the wins when they come, and ensuring you have a community there to support you when it feels like there are none, are imperative as a caregiver. The importance of support cannot be overstated.

In 2004, Helen met The Whitworths, early founders of the Lewy Body Dementia Association, and became heavily involved in the organization and its forums. She remains engaged in the community to this day, amassing an incredible network of those in the community whom she supports through education, awareness, and advocacy efforts as a volunteer. Although Helen has expanded her impact to other dementia-focused organizations, she continues her work with LBDA even still.

Helen’s world has grown large in the time since her sister’s passing. Quickly becoming a part of the international conversation surrounding LBD, she is now a member of the National Alzheimer’s Project Act (NAPA) Council on Research, Care, and Services along with other advisory boards, and a nationally recognized resource on Lewy body dementia caregiving. She has commented on a World Health Organization (WHO) paper, edited a book on LBD, created webinars and presentations alongside the University of California San Francisco, and spoken on podcasts.

Helen continues to participate in research and promotes the inclusion of those with lived experience of dementia in research development, manages support groups, and provides one-on-one support through the LBDA Lewy Buddy program. The impact of her tireless efforts is felt the world over.

Helen is an exemplification of LBDA’s mission to support those living with Lewy body dementias, their families, and caregivers. We are beyond grateful for her dedication and continued work helping others navigate their own journey with Lewy.

Helen, thank you. We are honored to present you as the Lewy Body Dementia Association 2022 Volunteer of the Year. 

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My mom recently passed away from Lewy body dementia on 1/9/23. She was widowed at the age of 43, my father died of brain cancer. For 25 years she raised and loved her three children. She battled with anxiety and depression. Also, she was never able to fully get over my father’s death. She never remarried or even dated. 

When myself, my twin sister, and my younger brother moved out, my mom stayed in our family home. She continued to be a professor of accounting and business at a community college. Years passed and she struggled to muster up the stamina to get to work due to her PTSD and depression with her loss. Over time, this caused her to be “encouraged” to retire early. Now she was in her family home with 60% of her pay, and alone. About 10 years ago she asked us to help her pack up the house as she was going to be moving into her own apartment. I thought this was great – downsizing after all this time.

My poor mom was a bit of a hoarder and had a lot of trouble keeping things clean on her own. I believe this was a mental health limitation. I walked in and the house was a mess. I couldn’t even see how she was close to getting ready to move. As we were there for hours helping her pack boxes, she told us to hurry before they changed the locks. I was very confused by this. When I asked her, she said she was “abandoning” the home. This shocked me. As a college professor of business, I didn’t know how she got so far behind the mortgage.

My siblings and I helped her move into an apartment in town. In 2012, she was pulled over for the way she was driving. She was on Klonopin for her petit mal epilepsy. The police advised her not to drive when she was on it, that she wasn’t being safe. She gave up driving from that point. She had her kids, and friends that would come in and out of her life to help her. My mom loved hard. She did the same with her friends. She was very lonely, too. Between that and her high expectations people tended to walk away from her friendship, causing her to lean more on her kids.

In 2016 she moved in with my younger brother. He had just been through a divorce. My mom helped him financially and helped him raise his two twin boys that were just a year old. She even helped him buy a house. He helped her get to the store and to her appointments. He also made sure she was safe. She was an active and loving Grammie to his boys. She lived in that home with him for three years.

During that time, around 2018, she had an event when she became very confused and “out of it” at his home. She was walking around without clothes, had knocked a lamp off her nightstand, and her room was in disarray. The EMS had to bring a chair up to bring her down. The doctors said it looked like she had a seizure and was “post ictal” and that is why she was so confused. I want to say she struggled with similar situations over the next four years. It became very apparent when she moved into her own apartment again in 2020; my brother was now living with his significant other. My mom did pretty well – got on the minibus for groceries and did dial-a-ride for her appointments when her kids weren’t available.

In 2021, when I was in my 3rd trimester of pregnancy with my second daughter, she had been begging me to take her to a back procedure as she had no other options. When I got to her apartment, she didn’t answer the door. I knocked, rang the bell, kicked, and yelled. Ultimately, I had to call the police. She had fallen in the shower and had been in there in her own stool for hours. She was hospitalized for that. There were other times my sister and I would go over there to find urine and stool on the floor.

She suffered delusions and hallucinations. She would be waiting for her boyfriend, “Pierce Brosnan,” (the actor) to come back and bring her food they had ordered. Then I had to call and order it for real so that she could eat. She states that she flew to California and stayed at his house. She would become very upset at times when her parents didn’t take her out to lunch when they said they would – they have passed. I would go over there, and she would say that she had been lying in bed watching tv with my dad – also has passed – and having popcorn with her brother – passed away as well. She was very prideful and denied any confusion.

In April she was sent to the hospital by her PCP after she was found wandering around people’s cars in the parking lot of her apartment building. She was deemed incompetent, and a conservatorship hearing was set up for 5/3/22. On 4/26 she was discharged home. We were called the same day telling us that she was now competent and capable of making her own decisions. They sent her home with no food or working phone.

Two days later, we went to the lawyer and drew up power of attorney paperwork for my sister and me. On 5/7, she was found wandering again. Neighbors found her going through cars again. On 5/9 she was sent home once again, even when we tried to fight it. I went to her apartment to try and meet the ambulance. When I got there, she was confused and manic. I couldn’t get her to sit still. She wouldn’t let me leave and kept following me out of the building, going downstairs to do laundry, fighting with her neighbor. At a loss, I called the police. They came and we sent her right back to the hospital. They agreed she was not safe, and that was the last time she was ever home in that apartment.

She went from the hospital to rehab, then to Worthington Manor, which is a rest home. She moved there in June. She was on the third floor and deemed capable of using the stairs. As time went on, she couldn’t do the stairs, so they moved her to the second floor, where they had an elevator. Then, they found her removing her clothing at night, walking the halls, stealing things from other residents, and yelling. They moved her from a single room to a double. They thought a roommate would help her.

My mom had a very lovely aide there that would sit with her at night. They would eat and color. My mom loved doing artwork at this stage. This is also something she loved doing when we were very young. Sometimes she would have the nurses call my sister and me. We would talk to her and encourage her to go to sleep. She struggled being up a lot at night. They did this to help her and kept her up later.

My brother got married on 9/24/22. We were suggested we only bring her to either the ceremony or reception. They felt it would be a very long day and a lot of stimulation. I asked my mom what she wanted (even though they told me not to). She told me my brother was counting on her and she really wanted to go. She saw him married, and she danced with him. It wasn’t easy. We had an aide come with her to take care of her. She didn’t make it until dinner as she started becoming increasingly agitated. But she made it. She’s in the pictures. She was with her family and had her beautiful moment with her baby boy.

Over the next month or so she had more bouts of being lethargic and difficult to arouse at the home. She was still pleasant and loved being with her kids and grandkids. She attended a Halloween party, which was challenging without help. She ended up having a large accident in the bathroom that my sister and I helped clean. For my daughter’s 3rd birthday, we had an aide come with her. It was such a beautiful time. I remember every time someone asked her if she was happy, she said “I am.”

We had spent a lot of time going to visit her. Coloring, painting, going out for lunch, shopping, and of course pizza. It was such a healing part of our relationship. All the pain from our childhood and the past seemed to melt into the background.

Five days after my daughter’s birthday party, my mom was admitted to the hospital. The home could not wake her up. She ended up having a status epilepticus seizure. From that point on she got worse and worse. She was flat, didn’t talk much at all, she was very difficult to arouse, stiff, could not follow commands, and had a tube feed. This was heartbreaking for us. As time went on and all other diagnoses were ruled out, she continued to decline.

We had a family meeting after a month and a half of her being in the hospital. They believe her big seizure caused her Lewy Body to exacerbate quickly. She was brought home to my sisters on 1/4/23. My sister and I are both nurses. We took care of my mom when she was on hospice. All three of her children were by her when she passed. It was the most beautiful and heartbreaking thing we’ve done.

I really hope that someone can benefit from this story. We fought with so many doctors, hospitals, and social workers to make sure my mom was safe and taken care of. At the end of the day, her kids gave her that. I am so blessed to have had this time with my mom.

Want to share your story? Submit an LBD Story today to share with the community.

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“He’s fading fast.” Those 3 words I muttered as a plea to many back on the 26th of May. What a month May is, to the youngest of his; May holds Mother’s Day, her birthday, and her fathers chosen middle name. 
 
“He’s fading fast.” Those 3 words that haunt me at the close of each dreadful day; A mind that could paint a picture so bright, that was so full of light, is now morphing to a blue shade of grey.  
 
“He’s fading fast.” Those 3 words that snuck in to take my dear father away. I’m not sure how this will unfold, or even what tomorrow may hold, I just hope his mind can escape some of this new disarray.  
 
“He’s fading fast.” Those 3 words I strain could never be enough to convey; That my love for him, is enough to turn from sin, no matter how many of his memories decay.  
 
“He’s fading fast.” Those 3 words that seem to constantly be set on replay; While his precious memories go missin, and his mind and body won’t stop and listen, why can’t it just cooperate and obey? 
 
“He’s fading fast.” Those 3 words that I choke on, they get lodged in my airway. I will stay strong for my dad, refuse to let him know I’m sad, although this disease is putting up a fight and getting harder to downplay.  
 
“He’s fading fast.” Those 3 words that creep in while backing out of my childhood driveway. I get on 270, drive my mind in circles relentlessly, and try to find peace down that dark unforgiving highway.  
 
“He’s fading fast.” Those 3 words taste like a lousy dreaded Monday; As I hold back my tears, and I pray away my fears, only wishing we could go back to last Friday.  
 
“He’s fading fast.” Those 3 words that strap me down on the railway. Anticipating the pain, from this slow and predictable train, all while observing from the top of his spiral stairway.  
 
“He’s fading fast.” Those 3 words as bloody as a bottle of aged Cabernet; I may have had one too many, cuz this room started spinning, and my emotions are beginning to sway.  
 
“He’s fading fast.” Those 3 words as stale as closing time at an old school cafe; Which would still taste fresh, cuz I was there with my best, all those years ago at Hometown Buffet.  
 
“He’s fading fast.” Those 3 words I trembled out of my quivering lips in May; They’re still being spoken, while we all pretend we aren’t broken, I feel him leaving, though I know he’s fighting to stay.  
 
“He’s fading fast.” Those 3 words have become my thesis statement to each and every wish I pray. Although we are both feeling lost with our eyes frequently glossed, there isn’t a single day with him I would ever trade.  
 
“He’s fading fast.” Those 3 words that sing old church songs on a foggy Sunday. I didn’t know back then, as I don’t know now, but maybe this will all make more sense one day.  
 
“He’s fading fast.” Those 3 words that resemble a wilted bouquet, will steal so incredibly much, from all 14 of us, like the clouds that engulf a hot summer day.  
 
“He’s fading fast.” Those 3 words that swoop down in a flock, or words of prey: they invoke as much danger, turn loved ones to strangers, and their welcome they tend to overstay.  
 
“He’s fading fast.” Those 3 words that put each of our vulnerabilities on display. I guess they didn’t change much, in my eyes he’s even more tough, and I am honored to be his youngest protégé.  
 
“He’s fading fast.” Those 3 words that changed my life as I knew it in May, will hold the 4 syllables, 4 vowels, 9 consonants and 13 letters, that I’ll continue to pray I could just pray away. 

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The Lewy Body Dementia Association 2021 Volunteer of the Year is Barbara Levine.

In 2015, Barbara Levine’s husband, Robert, was diagnosed with Lewy body dementia. Despite this life-changing diagnosis, Barbara notes that their day-to-day life had not changed drastically. Even after Robert was forced to stop driving in 2016, he was able to overcome this setback and maintain a level of independence using Uber, leaving Barbara feeling comforted by his resilience in the face of this disease and Robert’s changing capabilities.

Things were okay for a while, but in 2017 she and her family realized they needed more support, “We were struggling with assimilating that he had this disease, so I needed other people to talk to.” Barbara notes, “Friends and family are great, but they do not know. I went to one generalized dementia support group that didn’t work out for me, so I wanted an LBD-specific support group and that is when I found the Lewy Body Dementia Association website.”

Barbara noticed that the nearest support group was about three hours away, and this just wasn’t feasible for her. Jumping into action, Barbara reached out to LBDA for help in starting a support group, connecting with another local who was interested in being a co-facilitator, and a few short months later their group was formed. “Encouraging people to start support groups. That’s the best thing I did – for myself and the others attending,” says Barbara.

This support was crucial as Robert slowly declined. Robert never lost the memory of who he used to be and his self-awareness surrounding his own personal loss was challenging for Barbara to observe. She compares the journey to, “picking off a band-aid as slowly as possible,” and she felt that she had lost her husband long before his passing.

Having known and experienced life with Lewy body dementia for so long Barbara finds herself shocked by how many people are still unaware of the disease. She makes a point to hand out LBDA informational packets whenever possible, with hopes of increasing awareness and knowledge of the disease amongst healthcare providers and families alike. Barbara notes that, despite the difficulty of her family’s experience, if any good can come from it, there is purpose.

A year after Robert Levine’s diagnosis, Barbara decided she wanted to expand her efforts and began organizing a fundraising event for LBDA in 2016. Barbara recalls, “When I first started, all of the fundraisers were about doing a walk or doing a run, and that didn’t spark for me.” So, she found something that incorporated her passion for fashion and need to help fundraise. For the past five years Barbara has hosted a fundraiser presented by EVEREVE, a clothing store in the suburbs of Chicago, Illinois, for the Robert H. Levine Foundation. This foundation, created by the Levine family, aims to raise awareness for this disease and resources for support services, educational, and research efforts.

Despite the fundraiser’s success, Barbara shares, “I always wanted to do something bigger.” And she has! This year, Barbara’s fundraiser has grown into an exclusive fashion show and luncheon event with proceeds from the store’s sales being donated to the Lewy Body Dementia Association.

LBDA is grateful for Barbara’s volunteerism, and continued work in helping others who are affected by Lewy body dementia.

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The first time she started talking while asleep, I lay there with my eyes wide open, listening to her. Sometimes she’d move her arms, too. I never woke her up but questioned her the next day. She didn’t remember any of it. I just assumed she was talking in her sleep. When we arrived back at her house, I asked her boyfriend “How do you sleep with that?” He said he was used to it and we both laughed. He was a retired doctor. Who had heard of LBD 20 years ago?  

Just thought I’d share that the early signs of LBD are strong. After being diagnosed my mom told us she thought she’d had something wrong for about 10 years. Apparently, she lived with LBD for over 20 years. 

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The initial symptoms Ellen experienced included disorientation and inability to focus at work. She was walking around her office and wasn’t sure what to do or how to perform the normal functions of her job. Her employer was part of a healthcare system in New Jersey. They were able to conduct testing and determined that there were neurological issues present. It was just six months later that she would receive a diagnosis of LBD.

The diagnosis process entailed going to a neurologist over the course of six months for testing, and it was not until they sought a second opinion from a physician in the same practice that they were able to obtain the diagnosis.

Randy was dedicated to Ellen’s wellbeing. He managed her doctors’ appointments, at-home care, and the administrative process of obtaining long-term disability – he described seeking long-term disability as “an arduous process” forcing him to jump through hoops. He moved closer to his stepdaughter in Pennsylvania so she would have more time with Ellen.

Ellen’s symptoms continued to decline. She developed parkinsonism and gait issues that caused her to shuffle when walking. Her cognitive abilities also declined further. In October 2019, both Ellen and Randy recognized that the progression of the disease was becoming too much for him to manage alone. At-home assistance was called in before it was determined that Ellen would be better cared for in an assisted living facility. She passed in April of 2020.

Though Randy’s journey with LBD was devastating, he found a way to turn his experience into something powerful. He now volunteers as an LBDA Lewy Buddy supporting husbands of those living with LBD.

He would like to leave those on their own LBD journey with some insights from his own experience. One of his greatest resources was his wife’s neuropsychiatrist – the doctor monitored her medications and met with her semi-monthly. The neuropsychiatrist provided Randy and Ellen with advice on what to do in certain situations and as issues arose.

Randy also relied on the LBDA website for information on the progression of the disease. It prepared him for what the future held and the potential issues that might developed as LBD progressed.

Finally, Randy suggests care partners seek help and have patience with those living with LBD. Do not be afraid to reach out to a family member or friend for assistance – even if it’s just coming over to the house for half an hour while you go for a walk.

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In 2014, Dennis suffered a traumatic brain injury while overseas and had to have emergency surgery. For a while, the family thought that the issues Dennis was experiencing were a result of his injury. He started seeing a neurologist after his surgery. Some of the neurological issues he was experiencing include staring off into space in an almost comatose-like state and hallucinations. Once he notified the neurologist of his hallucinations, he was almost immediately given a diagnosis of probable LBD.  

Prior to his injury and the progression of his LBD, Dennis was a writer and journalist. He enjoyed traveling and covering stories. He still writes today, but Lewy has stolen his ability to travel. This has been especially hard on Dennis because journalism is his passion. Fortunately, he was able to connect with a journalist, Oliver, living with Lewy with whom he is able to share his interest. They were able to bond over their shared experiences and passions.  

Dennis sought further support and connection through the LBDA Facebook group, Lewy Body Dementia Association Living with Lewy. The online outlet functions as a support group for those who have LBD, and as a safe place to share stories, tips, and shoulders.  

LBDA had the opportunity to speak to his daughter, Ashley, and she shared some insights. She recommends that care partners take it one day at a time, and do not be afraid to ask for help.  

Ashley also recommends to those struggling with LBD symptoms but do not have a probable diagnosis to seek a second opinion. She believes that had she and her sister not had the relationship they did with their father’s neruologist, that Dennis might not have a diagnosis today. 

RESOURCES:

Lewy Body Dementia Association Living with Lewy – This Facebook group is intended only for those living with LBD to provide information and support. Membership is limited to those with Lewy body dementias.

Lewy Body Dementia Association Care Partners – This Facebook group is a place to provide support and guidance as well as share information and resources. Membership is limited to care partners of those living with Lewy body dementia.

Lewy Body Dementia Association Living Together with Lewy – This Facebook group is intended only for those in the early stages of LBD and their care partners.

Eldercare Locator – This is a nationwide directory assistance service helping older people and their caregivers locate local support and resources. It is funded by the U.S. Administration on Aging.

Additional Resources

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Fast forward to mid-2019 and now 78 years old, Pop’s is not able to drive, fully dress himself, wanders off frequently, and is too much for mom to care for on her own. Being me, and the daughter I am, I move in with my parents with my youngest daughter (she’s 12) to help my mom care for him. Pop’s will do anything for me because I’m his “Princess”. Doctors finally diagnose him with Lewy Body Dementia and explain that the vivid hallucinations, although not scary, are very real to him. I take a crash course in self absorbing all I can learn about LBD so I can be there for this man I love unconditionally, that is a Vietnam Veteran, grandfather to my four children and two great grandchildren.

We celebrate, what I believe will be our last holidays with him. Halloween, Thanksgiving- with all my children and grandchildren, Pop’s was overwhelmed and confused, he had an anxiety attack and asked why he was being held captive in this place. Please let him go home. As I cried, I helped him to his room and into bed. He is put on hospice care by the end of November 2019. The next two weeks he stopped eating and drinking. My Pop’s wanted to leave this earth in the comfort of his home with no medical aid. I watched him slowly die. He took his last breath on December 14, 2019 while my mom and young daughter were with him and I walked through the door. My daughter became a teenager a week later without the grandfather that had been the one constant man in her life.

Lewy Body Dementia robs us all! There are not enough professionals to educate people about what to expect and where to turn for help and support. Hospice told us over and over ” call us 24hra a day and someone is here for you”. Everytime I called I was told someone would call me back, and then I had to give all the information again and was told someone will be in touch. It’s just not good enough. My Pop’s donated his brain to The University of Washington research program for LBD in hopes it will help find answers and someday a cure. I will never stop fighting for a voice for those suffering and caring for others with LBD. My Pop’s was taken before his time was over.

I spent my 51st birthday this year, July 14,2021, at the Tahoma National Cemetery in Kent,WA with my Pop’s. He has been gone 19 months on my birthday and it still feels like yesterday.

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My dad’s story began a few years ago when violent nightmares would periodically take hold of him. My mom tells of his yelling and lashing out in his sleep, often physically attacking my mom with absolutely no awareness. My mom would wake him up and ask him what was wrong. “Someone is chasing me,” was always the typical response. It was only after his diagnosis that we discovered that what my dad was experiencing was called REM disorder, an early symptom of LBD that can often manifest itself years before any other symptoms begin to present.

About two years before his diagnosis, we began noticing what we assumed was normal age-related changes for a man in his 80s. At first, it was little things like forgetfulness with the DVD player or forgetting his favorite channels on cable. I recall making a list of his favorite channels to leave by his remote. But soon it became more serious. My mom was noticing his judgment while driving was becoming impaired. Mom encouraged him to give up driving. For my independent dad who drove all his life, this was a serious blow he was not ready or willing to come to terms with. After almost getting into a serious accident in 2017, he finally came to terms with his situation and turned his car keys over to my mom. He never drove again.

By the summer of 2019 falls started to become a more normal occurrence. My dad struggled for years with neuropathy and we wrongly assumed it was to blame for his frequent falling and imbalance. A big change was taking place in him physically as well. His gait was slower and becoming shuffle-like, his posture was becoming stooped, he was losing weight, and his eyes were beginning to have a vacant look about them. By this time normal, simple everyday things were becoming a huge effort for him. His speech was becoming garbled and he struggled to find the words to complete a sentence. He also seemed to be losing interest in things that used to bring him so much pleasure.

My dad recognized himself that something was seriously wrong. “Something is wrong with me. I don’t know what it is, but I can’t function” was what he would often tell my mom.

By the fall of 2019, dad’s condition was becoming very obvious. A CAT scan revealed mild cognitive changes but we knew there was more to it. He was beginning to suffer with hallucinations, paranoia, restlessness and sleepless nights. He needed help shaving and dressing. By February 2020 he was sent to another neurologist who diagnosed his condition. Until then we never heard of Lewy body dementia. We were told he could live this way for many years.

In May of 2020, at the height of Covid-19, he was sent to the hospital for a strangulated hernia. The hernia issue was corrected, but unbeknownst to us, the combination of the hospital stay, being away from his family and surrounded by strangers, the medications, contributed to his condition being ‘sped’ up to the point that by the time he came home, my dad was completely bedridden. Our hearts were broken to see this once strong, vibrant man reduced to a feeble, helpless shell of himself. He was now sleeping more and more and eating less and less each day. The visiting nurse recommended we put him on hospice care. On July 24, 2020 my mom and I fed him him some chocolate pudding and some ice cream. By now he could no longer eat any solids or drink any liquids without choking. He slipped into a semi coma later that day. We called the nurse who advised he had now “entered the dying process” which could come within a day or so. We called for last rights. We gathered all our family around him and kept vigil around the clock for the next few days. We all took turns saying our goodbyes and telling him how much we loved him. We all gave him our permission to “go rest.” Everyone except my mom. My mom could not bring herself to let him go. On the morning of July 28, I woke up next to him and could hear his shallow, barely there breathing. I knew he was holding on for my mom. I went to her and told her she needed to tell him it was okay to go. After much reluctance, she spoke to him softly telling him that it was okay to go and see his mom and dad and grandmother. My mom told him she would see him again someday and then they would never be parted again. With those words at 10:41 am, my dad opened his eyes, took two breaths and peacefully passed away.

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