Meet your retired Peer Volunteers!
Alan A., Alan in Colorado, Becky08, Jona, LindaG2, Megan L, New Realm, Shaye
Alan.A: (Peer Volunteer From October 2009 - September 2010)
For seven years, until his death in mid-Stage 7 of Alzheimer's disease last February, I was my father's caregiver. For the last two of those years, until I moved him to the nursing home where he ultimately died, I was a long-distance caregiver, commuting weekly from Washington DC to New York to oversee his care. Before that, I was on scene in New York. He first began exhibiting symptoms in 2001-2, took a sharp turn for the worse after my mother's death in 2003, and showed the first clear signs of Alzheimer's in 2006. So it was a long haul. I'm now dealing, slowly, with the aftermath of his death. Many of you who are reading this will know what I mean.
In the rest of my life I'm a writer, photographer and corporate communications advisor. I first began writing a blog about my father's Alzheimer's – and my own experiences wrestling with the caregiving establishment and with conventional understanding (not!) of Alzheimer's in 2008. It's called Dementia Nights, and if you're interested in hearing about my and my father's Alzheimer's adventures, you're welcome to check it out. It's at www.dementianights.com.
Like my fellow Peer Volunteer and colleague Johanna C., I have a healthcare background – I have a Master's in health policy from The New School (I specialized in health insurance issues), and a couple of careers ago, I worked in the communications department of a large New York City hospital. After that, I did communications work for large pharmaceutical companies. And like Johanna, I'm able to say confidently that none of that prepared me in the least for Alzheimer's. There's really no system for dealing with the disease – or rather, the system that exists isn't designed for chronic illness or for brain disorders. Put the two together and you've got a perfect storm on your hands.
That's why becoming a Peer Volunteer means so much to me. In the absence of help from the system, we have to help each other. The Alzheimer's Association message boards are a superb way of doing that. They've meant a lot to me, and by volunteering – as with writing my blog – I'm hoping as a Peer Volunteer I can return the favor and pay back some of the kindness and generosity I've found along the way. I'm also hoping I can work with all of you to advocate on behalf of Alzheimer's and change the way the society thinks about and deals with the disease.
I'm looking forward to continuing the journey with you.
Alan in Colorado: (Peer Volunteer From January 2009 - September 2009)
Alan worked as a Peer Volunteer during the first pilot. He gave a lot to the group and continues to still give to our community through his insightful posts, and thoughtful support. Alan became a Retired Peer Volunteer September, 2009. Here is more of Alan's story.
"I'm 53, diagnosed with EOAD about a year. I also have a general neurodegenerative disorder, causing a good bit of its own problems with pain and organ decline.
My career was as a psychotherapist. I've also taught at the graduate level, helped produce a local market tv series on psychotherapy issues, and done dozens of professional trainings. On career tests, I score like a musician, and have enjoyed many years of performing. I currently just plunk on my guitars, and I'm working on an unfinished violin, finishing it and then on to irritating the neighborhood cats with my playing. Just before my illness struck, I was getting into stage acting, and had parts in 4 stage productions that people paid to see.
I've found that my best help is on the message boards. While I've accumulated a great team of doctors, there are limits to what they can understand. The Alzheimer's Association online community has the information that I need, and the fellowship I crave. My challenge is that while I can often communicate surprisingly well, I experience sundowning or something like it, and have to be careful about cranky posting.
As a peer volunteer I hope to encourage others to speak up and be recognized for their contribution. I will always be open about my own problems, both my triumphs and my struggles. And, when needed I will strive to disagree without being disagreable.
Becky08 (Peer Volunteer from October 2010 - April 2011)
Hello, my name is Becky. I’m using the screen name, Becky08, because 2008 was the year that my mother was finally diagnosed with Alzheimer’s. In hindsight, as I’ve learned more about AD through this website/community, it’s apparent that my mother has been dealing with this disease for far longer than I suspected. Since placement at the ALF in the last few months and with a slight change in her medication regimen, she seems to be functioning at a slightly higher level than when she was at home with me. While the decision to place her was not an easy one, it was the best thing I could have done for her under the circumstances.
My parents had me in their later years (Dad was 47, Mom was 42). My father had previously been married and had three children from that marriage, all grown and starting families by the time I was born. At the age of 17, I was just graduating high school, ready to embark on going to college to get a degree in accounting, when my father was laid off from his job. I chose to forego my plans and went in search of a full-time job (retail) and began assisting them financially. Eventually, I fell quite by accident into the legal field. I have been a paralegal for the last 18 years. Before I knew it, my parents had entered their 70s and started having health issues, especially my mother. My care of them shifted from financial aid to caregiver. My father passed away in 2004 at the age of 80 from a massive heart attack, leaving me as the sole caregiver of my mother. At age 76, she had already been showing signs of dementia for a few years prior to his death.
When she was diagnosed in 2008, her physician told me that as her only living relative and sole caregiver, it was imperative that I have support. He encouraged me to contact the local Alzheimer’s Association. Unfortunately, their meeting times and locations didn’t fit my schedule, but I was fortunate enough to stumble onto the message boards. They have literally been my life line through this.
What I hope to accomplish as a Peer Volunteer is to offer comfort and a listening ear to others that are on this journey with their loved ones to have an opportunity to give back what I continue to gain from this community.
Jona: (Peer Volunteer from April 2010 - January 2011)
"My name is Jona Leatzow, I am married to a great guy, I have a daughter who is getting married next year and have a grandson who is 6 months old.
I became involved in the Alzheimer's Association Online Community due to my mother's illness with Alzheimer's in December of 2009. I had a lot of questions that I didn't have any answers to and I happened upon the forum website by complete accident. I read the posts from the community for about a week before I asked my first question, if I remember right, it was very long. On January 22, 2010 mom's journey ended, I took about a month away from the forum, trying to get my life back in order. This is when I realized that I missed the online community and the people there, so I came back and have been here every since.
As a Peer Volunteer I would like to share the knowledge that I have learned with the people of the online community. I would like to share their tears of sorrow and joy, to let them know that even though they face a difficult foe in Alzheimer's that there still is a light at the end of the tunnel -that they fight a good fight when they fight against this dreadful disease."
LindaG2: (Peer Volunteer from October 2009 - June 2010)
Linda passed away June, 2010 while still caring for her dear husband who has Alzheimer’s disease. This loss was very unexpected and difficult for the entire Online Community, especially those close to her. As a Peer Volunteer, Linda devoted her time to meeting the needs of other spousal caregivers. We will miss Linda. Please read the bio she wrote March, 2010.
"A little bit about myself and my involvement with this special online community. My husband, Frank is now is stage 6 of his Alzheimer's disease. He is 77 years old, a former attorney and I am 69 years old. So far, it has greatly affected his cognition but has not impacted his general personality. For the majority of the tine he remains the same sweet, cheerful person that everyone whose path he has crossed sees in him. He has, however, started to have some anxieties and crankiness. As his disease progressed the transition from full time spouse to full time caregiver has certainly had its challenges. I retired from being a clinical nurse consultant who traveled half the time planning work environments for nurses. Prior to that I managed specialty care programs for patients with Cystic Fibrosis, Asthma and Chronic Lung Disease. Another set of diseases with poor outcomes.
Of course, being an RN has helped to be a caregiver, but dealing with this in your own family unit is a very different journey. Plans for retiring together, continuing our travels, etc quickly ended. However, I do not question why this is part of my life experience. Being involved in community service work has also been a big part of our lives. As I retired from professional life, I also transitioned my community work to devote my energies to contributing to the Alzheimer's disease (AD) world.
I discovered the Caregiver's Forum a few years ago and not only use the message board for posting and learning from others, but have been actively involved in the chat room experience. When I was alone in hotel rooms at the end of a work day this was a great connection for me.
Now, as a Peer Volunteer to the online community hope to welcome to our new members and supportive to our continuing community members as we all travel down this unique road."
Megan L (Peer Volunteer from April 2010-April 2011)
"Hi, my name is Megan and I am 30 years old. I have been helping my dad take care of my mom, who is 57, for 5 years, since her original diagnosis in 2005. Last year we found out it was Lewy Body Dementia and she has declined very severely in the past year and is now in the final stage. She is no longer on any memory medications, sleeps about 14 hours in bed and another 2-3 on the couch and her mobility is quickly becoming an issue.
We have hired a full time in home caregiver to help with mom and plan to keep her here for as long as we can, hopefully to the end. Although the road is rocky, we still make the most of each day.
Within the last six months, we have also lost my grandma to ALZ (that was just last month) whose struggle ended after a 14 year battle at the age of 96 due to pneumonia from a broken hip. She went quickly and is now with her husband and son who passed in August '09 from brain cancer.
As a peer volunteer, I hope to help others find the information they are looking for and make them feel welcome to such a wonderful site."
New Realm: (Peer Volunteer from October 2009 - March 2010)
Hello All. I'm Diana, 49, a native So Cal Gal who transplanted to the Pacific NW almost 9 years ago. I'm a widowed Mother of 3, step Mother of 1, and Grandmother of 2. I've been an LPN most of my adult life working primarily acute care, as well as home care for elders and disabled children. As other nurses will attest, nothing in our careers fully prepares us for the 24/7 life journey with an AD loved one. My career went on hold in 2003 when I brought my parents to live with us. My father has AD, and Mom suffered from cancer. Mom passed away in 2005, and just before Mom's death my father was placed in a Memory care facility. Dad is now late stage 6, early 7, diagnosed about 10 years ago.
In a matter of weeks after my Mom passed away my husband was being evaluated for, and was formally diagnosed with AD. I transitioned from care of Dad and Mom, to care of my husband, Paul. His course of AD was quite rapid. Paul was diagnosed November 1 of 2005, and passed away March 14 of 2009. I've recently returned to work full time, and continue to be an advocate for my Dad.
Through my journey with Paul I developed bonds with many here on the forum. And a bond that only fellow caregivers can truly understand. Although Paul's journey ended, for me, that strong connection to caregivers remains. I hope to provide understanding, as well as guidance to my friends still on this AD journey, as well as to those who are new to AD, or are just joining us here. With Alzheimer's I have been "in it and through it" and can appreciate that no two situations are exactly the same. I bring the experience of life as both an AD Spouse/Widow with Children at home, and as an AD Daughter with Siblings all over the map, literally and figuratively. As a Peer Volunteer hope to share these perspectives and experiences with all who come to this wonderful place.
Shaye (Peer Volunteer from October 2009 - March 2010)
A bitter sweet "Hello" to all! I'm 59, married to my second DH, no children but we now have 5 cats; the 3 feral kittens are staying! I'm the eldest of eight children (I returned home to help my mother raise them after our father died in 1971). I have been a phone company long distance operator, preschool teacher, bartender, marketing expert, business woman and most recently an Activity Director for Seniors; in a variety of settings from board & care to ‘independent living', aka a ‘caregiver' most of my life.
In college, getting certified as a preschool teacher, I learned ‘how we learn'. Many years later, working with seniors, I was fascinated by Alzheimer's disease, as it seemed to be ‘how we unlearn'! I took extra classes, attended many conventions, I earned my RCFE certificate for administrator of an assisted living facility, I became Nationally Certified as an Activity Director (college equivalent, as CA only requires a 40 hour certificate program), I took the Eden Alternative Associate training and became a Certified Memory Impairment Specialist; able to train others in ‘understanding dementia patients'.
And then it became personal; my step-father was diagnosed with ALZ in 2003 and my mother ‘had memory issues'. She was diagnosed with ALZ in 2006, but also had chronic heart problems and was a heavy wine drinker which complicated and ‘covered' her symptoms. NOTHING, I repeat NOTHING in my ‘training' prepared me for this!
For a few years after they returned to CA, from retirement in Arkansas (whole other story) they fared pretty well ‘on their own'. They lived across the street from my youngest brother and my SF still drove. Then in 2003 they moved themselves to a little house and my father's driver's license was revoked! This was when we realized how ‘badly' they were actually doing by themselves. So after countless lunches at many facilities, we moved them into an Assisted Living Community. They did well. I commuted from the LA area twice a month, staying with my brother for several days doing the doctors, grocery shopping, Wal-Mart routine. I was able to move to San Diego in 2005/06 when my DH semi-retired. It was then that I REALLY saw how compromised they were. For a few years I floundered, thinking all my training would somehow kick in any minute. It didn't but then I found this supportive community…the members here literally saved my sanity & marriage, if not my life. "My Mommy" surprisingly went first last November; my wonderful step-father just joined her this month.
Now I find that the journey continues…the paperwork, the sorting of their belongings, the ‘what ifs'. Yet, a veil of responsibility has also lifted. So I appreciate the opportunity to return here as a Peer Volunteer; to maybe give back a little of the help, hope and yes ‘happiness' of this strange and adventurous journey we have all been tossed into Alzheimer's Land.
