5 Things People with Alzheimer's Want to Tell You
· I've been diagnosed, not defined,see the real me: "I am not a diagnostic or a statistic. I still have feelings, thoughts, dreams, hopes and plans. There are many things I can still do. I am not sitting in a wheelchair in a nursing home staring out the window—not yet. I am a vibrant, loving person. Always remember: I have Alzheimer's, it does not have me."
· I can't do this alone, help me: "I need you to help me find ways to succeed at helping others and in doing something significant with my life. I am very capable of putting thoughts together and expressing them. I sometimes need help understanding things, but that does not mean that I don't understand. I sometimes need help expressing things, but that doesn't mean I have no thoughts, and nothing to say. Help me when I need it, and let me do all I can,
while I still can."
· I am worthy, respect me: "I need to feel that what I say and do matters. I have much yet to offer the world. In many ways, I have more to offer than someone who has not read the final chapter of their life yet. I have lived life, my life, and I am worthy of respect, just as I was before."
· I am scared, comfort me: "I am scared of the unknown. I don'tknow if I have six months to communicate, or six years. I worry about going to bed at night and whether I'm going to be as bad tomorrow. This disease is with you 24/7. It's my brain and I can't get away from it—it is a scary thing."
· I crave compassion, love me: "I need to feel loved and needed, and that my contribution to life matters and helps
someone else. I need to feel loved and not rejected because of my diagnosis. I need people to meet and accept me where I am at, right now...It's important to understand that I don't understand. I don't have any idea why I forget some things and remember others. It's not intentional—I just don't have the ability to realize what I'm doing wrong."
EODA Provincial Meeting
Early Onset Dementia Alberta (EODA)
2nd meeting: Oct 25/14
Red Deer, AB
Great day in Red Deer, meeting some friends from last year and meeting some new ones. Bill Moore Kilgannon from Public Interest Alberta facilitated the day. We reviewed the 4 issues, some have changed a bit, more because we understand them and the implications of decisions made better than we did a year ago. Some discussion of where we, EODA, are as a group now, and our relationship with ASANT. Very disappointing to not have ASANT stff with us this year but we will do a better job of getting our information out in the future. Also some discussion about preparing or meetings with AHS and others coming up. We need to update our personal stories and so some other background work to support those of EODA who represent us. Finally Bill provided a short butfun trianing exercise for dealing with the media. One of the ideas put forwrd was that January is Alzheimers month and the 3rd week should be Early Onset Dementia week. popke are encouraged to think of ideas. For the full report please see "Meeting Minutes". Next year EODA is scheduled for October 23 and 24, 2015. Save the Date!
Provincial EODA meeting with the Minister of Health
The 4 BIG issues were summarized and presented to MofH Fred Horne in Juky of 2014. They are still the 4 biggest issues today:
1. Home Care: Differences in application from region to region, issues with the needs assessments and who may provide AHS supported care. Some regions in the province excel in the provision of Home Care support. How can we get other jurisdictions to follow the same best practices?
2. Lack of services/programming: There is a need for full time, age appropriate community-based support. There are successful organizations in most communities (often senior’s centres), that offer extensive programming. If provided with adequate resources, these organizations could keep those with early onset actively involved in their community. e.g.: Full time Recreation Therapists at a senior’s organization could support individuals plus build capacity of family members and volunteers.
3. Long term care: The majority of long term care facilities are not in the position to deal with younger people who have dementia and are still physically very active. Our goal is to keep our partners engaged and to channel their energies rather than medicating them.
4. Diagnoses and Medical Support: Our partners were diagnosed with early onset dementia prior to the age of 65. In fact, the majority in our group were diagnosed in their mid- fifties. As a result, diagnosis can be difficult because most doctors don’t believe it is a possibility. Issues arise because the typical supports for dementia are based on the belief that patients (and their caregivers) are in their senior years, have adult children, are financially stable, and have retired.
Alzheimers Cafe in Lethbridge
The Alzheimers Cafe is held monthly in Lethbridge at the Pemmican Lodge. This is a casual get together, a chance to meet others and have a visit. NO stress, No commitment, nice people!
102 5 ave South
4th Monday of the month - next get together is Monday Oct 27/14