You may have seen some of your fellow members with an Alzheimer’s Association Peer Volunteer Badge next to their screen name and thought to yourself- 'What is this?' Well, these members are a part of The Peer Volunteer Program designed to welcome, guide, and support all members of the online community.

Peer Volunteers are members just like you, who will work closely with the Alzheimer’s Association to pursue efforts in order to enhance and develop the online community. Peers will actively assist forum organization, encourage posting and supportive behavior within the community, and collaborate with the Association when needed. Although they provide these supportive services, they are not administrators of this site.

Peer Volunteers are community members; they are caregivers and persons with Alzheimer’s disease, they are not professionals in this area. Our Peer Volunteers come from a variety of backgrounds but they have three things in common; an interest in the success of this community, Alzheimer’s disease and other dementias have affected their lives, and they have all found support within this community.

As of October, 2009 we have added five new Peer Volunteers. Please read below to learn more about your Peer Volunteers

MEET YOUR PEER VOLUNTEERS:

1. Alan.A: (active Peer Volunteer since October, 2009)

“For the past two years, I’ve been a long-distance caregiver to my father – now 87, in late Stage 6 Alzheimer’s. Before that, I was an on-scene caregiver. 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’s been a long haul. Now, I’m in the process of moving him to a nursing home near me – the next trauma in a long series of traumas. Anyone 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 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 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.”

2. Carolina Songbird: (active Peer Volunteer since January 2009)

“I'm here because my Mom has Stage 7 vascular dementia. She's in a SNF with Hospice assistance. My dad lives nearby and visits her daily. He does not understand the disease or her other medical problems, so I am the medical interface. Increasingly he is relying on me for other things as well, since his memory and reasoning skills are slipping. I am starting the process of getting him tested for diagnosis as well, since it is hard to know if this is just depression and stress (they're been together 53 years) or something else. So I have one foot at each end of the journey, so to speak. The time demands of caring for hubby, blind dog, Mom, Dad, and oh yeah, ME have forced me to give up many volunteer commitments, but being an online peer volunteer is one way I can contribute and make some sense out of what our family is going through on a time frame that fits that "phone may ring at any moment" life.

I have lived in the South all my life and now live on the border between South and North Carolina. My husband is a professional speaker, and I develop much of his material and handle his marketing, sales and administrative work. I like to refer to my past as "checkered," because I have done many things: managed a family practice, sold real estate, worked for the Chamber of Commerce, catalogued books for a library, taught college, and was an editor and reporter for two different newspapers. Every job gave me some small skill I can use in my current job as "quarterback for Team Mom.

As a peer volunteer, I hope to make others feel less alone and to help them find their way to the knowledge and resources they need to help their loved ones.”

3. dj okay (active Peer Volunteer since October 2009)

Hello! My name is Donna. Because it’s a common name I decided to use my initials for my screen name, “dj okay”. The okay is because it became a common word when my mother was in the early stages of Alzheimer’s and afraid. Afraid of changes in her life, afraid of forgetting something important, afraid of what the disease would do to her. Our mantra became “It will be okay.” Not great, but okay, because acceptance is the key to living with or around this disease, for her and for me.

I was born and raised in Michigan, but my parents were born and raised in Alabama. After living in Michigan 25 years, they moved back to their home state. After my father’s death, we had to relocate my mother from Alabama to Michigan 4 years ago to be near my brother and I so we could watch over her care. I have been her primary caregiver/advocate, with assistance from my brother. I thank God every day for a loving, supportive family. I would have lost my mind if not for them and my faith in God.

I am a retired computer analyst and spend my spare time gardening, sewing, and doing custom framing in my home. I have more time to spend on my hobbies now that my mother is in a good nursing home and in stable condition. I have one married son, but no grandchildren yet. We keep hoping!

As a Peer Volunteer, I would like to welcome newcomers to our community and share some of the warmth and friendship I have found there. It is a wonderful forum and I am proud to be a part of it.


4. Johanna C. (active Peer Volunteer since January 2009)

"Hello Everyone! I am Johanna C. I was born in the UP of Michigan and live in Southern California. I have a mother with advanced FrontoTemporal Dementia as well as a step-father with mid-stage Alzheimer's Disease.

My background is that of over 20 years as Administrator of Patient Case Management in acute hospitals. This encompassed the departments of Discharge Planning, Case Management, Social Services and Utilization Management. Earlier in my career, I was also charge nurse on both medical and surgical units. The most interesting job I ever had was being a store detective to help work my way through nursing school.

I have a Master's Degree in Health Administration as well as Public Administration. For a time, I also consulted independently in the field of Quality Improvement performing monitoring for a large HMO, Home Health/Hospice, physician offices and acute hospital departments. Secondary to the parent's needs and evolving changes, I no longer have the time to consult.I especially felt it important to list my professional background because of what I am about to say.

All that education and all that experience - nothing and I do mean nothing, could begin to prepare me for what I was about to encounter in the face of dementia. Don't ever feel bad about feeling, "lost at sea". That is part of the process. We are all there at one time or another. I remember, especially in the beginning, all the sleepless nights, those horribly difficult decisions, self-doubt, pain and grief. Just like everyone else, I had to fly by the seat of my pants trying to figure out the "how-to's" regarding all the challenging dynamics.

This is one of the reasons why I volunteered for the Peer Volunteer Project. I love people, plain and simple. If I can be of assistance secondary to my knowledge or learned experience to even just one person, I am both humbled and honored to be able to do so.

Over the past year, my mother has had a profound and complex physical and mental decline which ultimately required NH placement - the most difficult thing I have ever had to do in all of this. I would have to say that my mother's FTD has been far worse to deal with than my step-father's Alzheimer's Disease. My step-dad lives in his own little house with a 24 hour aide. He absolutely refuses to leave his home. I don't blame him. I am struggling mightily to eke every penny out of their modest assets to keep step-dad in his home as long as possible.Though the parents are not in my home, it takes a very large amount of time and attention to coordinate and meet their ever changing needs.

In closing, I want to share that I love this Online Community. It is the best I have ever seen. The lives this has touched and supported is amazing. I cannot thank the Alzheimer's Association enough.

My hope is that as Peer Volunteers we can provide a warm welcome and guide to new members and continue our input in support of all members as we always have done. I know for certain, without the helpful and often loving assistance I first received from the members on the Caregiver's Forum, my journey would have been far more difficult."

5. LindaG2: (active Peer Volunteer since October 2009)

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 76 years old, a former attorney and I am 68 years old. So far, it has greatly affected his cognition but has not impacted his general personality or disposition. He remains the same sweet, cheerful person that everyone whose path he has crossed sees in him. As his disease progressed the transition from full time spouse to full time caregiver has certainly had it 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 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.

6. Lisa428: (active Peer Volunteer since January 2009)

"My name is Lisa. I am 54 years old, diagnosed at 53 with EOAD. It took 6 months of testing to receive my diagnosis. I am also a caregiver to my Mom who is 77 and has Alzheimer’s disease. I have a daughter, Aimee, and a sister Linda. I was a Registered Nurse. I am a member of the Early Stage Advisory Board of the National Alzheimer’s Association. I do volunteer work with the Alzheimer’s Association such as Memory Walk. I have spoken at several local and National Alzheimer’s Association meetings to tell my story. I am an Alzheimer’s disease Advocate. I am pushing for more Early Diagnosis, changing the 10 warning signs of Alzheimer’s disease, pushing for legislation for eliminate the 2 year waiting period for social security disability and Medicare.

As a Peer Volunteer I hope to help others like myself find their voice. When I was diagnosed the Alzheimer’s disease message boards were a life saver for me. There wasn't an Alzheimer’s Association in my area. I was scared, confused and lost. The wonderful people on the message boards helped me a great deal. It was a very painful time. I hope to help others transition into their new lives and roles by being there, answering questions and referring them when they need more help."

7. New Realm: (active Peer Volunteer since October 2009)

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

8. Shaye (active Peer Volunteer since October 2009)

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.


9. Sheryl726: (active Peer Volunteer since October 2009)

Hi I’m Sheryl, I am 62 and caring for my mother age 80 in stages 6 of Alzheimer’s. I have taken early retirement in order to care for my mother and know that I will never be sorry.

My employment field was medical, medical records in hospital and medical office manager. Many sad stories have happened in my work life, but this journey that we are on lends such heartache.

Compassion is something that is ingrained in me but the tragedy of this disease causes pain and tears of such proportion that I was looking for the shoulder to lean on in one of those dark nights and low and behold I found Alzheimer’s Associations website. Hallelujah! They cry with me, make me laugh, despite myself and have really good help suggestions and resources to share. The forum is great and I enjoy the interaction of the chat room.
When the notice to apply as Peer Volunteer was posted I decided that I would apply. As a Peer Volunteer I hope to give someone that extra “shoulder” and to let them know that they are not alone in this awful situation that they find themselves dealing with.

People like Johanna, Lisa, Ttom, Alan and Carolina are so remarkable that I feel a little overwhelmed as I move into this position but that is what a Peer is – someone who is in the same boat you are. My heart is full as I step up to the plate. I pray that I will be used in this journey of fear with our LO.

10. Ttom: (active Peer Volunteer since January 2009)

“Hello, my name is Tom. I'm 59 1/2 and recently fully retired. I was diagnosed with Alzheimer's related dementia in June of 2008 after a lot of testing completed at my wife's request. My 30+ career as a Sr. Plastics Manufacturing Engineer ended in 2005 when my employer sent my job to Asia. I decided to go back to work locally but there was nothing that compared to the job I had been educated for. Since I felt it was important to keep myself active I began to evaluate other alternatives. At my age, moving away from my children and settling into a new town and home was not a good option.

I took a job in a mechanical field that I had been trained for and was let go because I could not perform up to standards. Well, that hurt! I looked around and found another mechanical job that fit my background. Shortly I released from that one for the same reason. Doubly hurtful! Found another job that I was qualified for. It was working for a friend that I used to work for as an Engineer. After about 6 months they decided to move my job to the night shift and I quit. Found out later that they hired another person for the day shift. Not too sure what happened there and I never pushed my friend for a reason. Soon after that I began to get lost while driving in familiar areas and other times, how to get to places I'd been to before. Then I had an incident in which I completely became disassociated with myself and became argumentative.

After that incident my wife became concerned and asked me to get some medical help. She works in a Human Resources position and is trained to notice characteristics like I was showing. My doctor sent me to get MRI's, EEG's, spinal taps, Psychological exams and Neurological exams. The MRI showed some brain atrophy. The neurologist put me on Aricept. My doctor later added Namenda and anti- depressant and here I am. One last piece of the puzzle to add, I had a stroke and spent 30 days in a coma in 1982 and mental health problems are in my family history.

Presently, I am in the process of applying for SSDI. This is a decision made for survival reasons. I would like to be in denial of having Alzheimer’s but I can't keep a job because I can't concentrate or focus. I will try to accept the stuff that fell on me and move to provide for my family. The Serenity Prayer is all that comes to mind here.

As a Peer Volunteer I hope to have the opportunity to do whatever I can to help. The Message Board forum has provided a good support group for me in the past. I want to give back as good as I have received! There are no Support Groups in the Harrisburg area strictly for Alzheimer’s patients. I would like to learn as much as possible in this area. Maybe I can provide some useful knowledge by participating in our support group here.”

MEET YOUR RETIRED PEER VOLUNTEER:

1. 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.

This message has been edited. Last edited by: Jaimie E.,