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."
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