I worked for 31 years for a large Corporation. Most of those years were spent in Leadership positions doing Project Management and Business Planning. As any of my co-workers, friends and family will tell you, I am probably one of the most organized and methodical people anyone has ever seen. I plan everything and attack any plan with vengeance. I am a true believer in “if you fail to plan, you plan to fail”. I do not plan on failing with Alzheimer’s and that is why I have developed an Alzheimer’s “Business Plan”. Three days after my diagnosis I sat down and developed it and it revisit my plan weekly to ensure I am on track (Siri reminds me)! This plan not only keeps me on track but it ensures that I have covered all the important things I need to get done IF my disease progresses. I shared it with my Alzheimer’s doctor three months after my diagnosis, and she said she has never seen anyone take this approach. Thankfully, I am very computer literate and am using technology to my advantage (stay tuned for a future post on that). I thought some of you could benefit from seeing my Alzheimer’s Business Plan (which I have generalized somewhat). Please feel free to comment if you think I missed something or have questions.
My Alzheimer’s Plan
Immediate Action Items (0-2 months)
- Continue to maintain my weight.
- Continue to exercise doing mostly cardio exercise.
- Socialize, read and other activities that use different parts of my brain.
- Take 30-60 minutes naps, and make sure I get a good night sleep (per doctor).
- Begin taking Aricept or Namenda.
- Download BrainHQ onto my phone/iPad and play it daily to help with memory.
- Have CAT Scan.
- Begin taking over the counter supplements called phosphatidylserine or vayacog (fish oil + PS).
- Revisit Alzheimer’s Plan once quarterly to make revisions as necessary (see next post).
- Follow up with doctor regarding cat scan/medications, etc.
- Start journaling regularly and documenting things I want to remember. Increase use of Siri and Amazon Echo.
- Make out a new Bucket List .
- Document passwords and account #s for all accounts/websites, etc that my loved one will need when I am unable to access them.
Intermediate Action Items (3-12 months)
- Continue to stay positive and realize how lucky I am to have gotten this diagnosis early so that I can start taking the medication early enough to potentially slow this down. I do not have terminal cancer. I have 10+ potentially good years left. Life is good!
- Discuss my diagnosis with my family and friends. Encourage them to stay in contact with me regularly.
- Modify our travel plans to occur over the next 5-7 years instead of the next 10 years in case my memory goes.
- Do NOT sweat the small stuff.
- Realize the impact this has on my spouse as well. He is faced with potentially taking care of me and losing me earlier in life than is expected. Be cognizant of his feelings and emotions and the toll this will take on him as well.
- Research Early Onset Alzheimer’s support groups for myself as well as support groups for me and my spouse.
- Discuss this diagnosis with my primary care physician and the impact it will have on any other conditions I may have.
- Review my emergency documents with loved ones who need information.
- Notify my close friends regarding my diagnosis so they won’t be shocked when I start fund raising.
- Sign up to walk local Alzheimer’s Walk and recruit my friends to do so as well.
- Send a note to my family and see if they want any of my genealogy reports.
- Find someone to take my old genealogy photos to ensure they are preserved.
- Identify who can take over my genealogy databases and train them on my research.
- Get a Do Not Resuscitate in place.
- Apply for Disability through the Social Security Administration. They have an early compassion clause for people who get Early Onset Alzheimer’s before 65 years old.
- Organize my household so that I can tell Alexa where everything is at and she can tell me when I ask her.
- Everything I have is stored in the cloud. Train my husband and other caregivers how to access the data
- Document how I organize and administer my medications and train my husband/caregivers on how to do it.
- Develop a spreadsheet with my medications, medical/surgical history and list of all my doctors and phone #’s that my husband can easily take with him to appointments, etc in the future.
Long Term Action Items (1-2 years)
- Continue to stay positive! My glass is half full EVERY DAY! I have been so blessed to have the life I have and the financial means to do what I want and have decent health to do it. I have a wonderful supportive husband and friends who support me. I GOT THIS.
- Modify my will/trust prior to significant cognizant decline.
- Determine in the event I must go in a long-term care facility where will that be? Research potential long-term care facilities to determine where I may want to go to. I do NOT want to be a burden to my spouse. It is too much to ask of him and not fair.
- Spend significant time with those I love.
- Meet with my financial planners to adjust my plans accordingly.
- Do NOT worry about money………life is short. I need to enjoy it.
- Document my funeral plans for my loved ones to carry on when I die.
- Revisit my emergency documentation with spouse.
- Research brain donation through the Brain Network at Mayo Clinic.
- Assess safety risks as needed at home and with my health and purchase devices, etc as necessary.
- Research Whole Body Donation.
- Make sure local hospitals/nursing homes have copies of my advanced directives and DNR.
- Write letters to my future grandchildren.
Most importantly, don’t worry about this! There is nothing I can do to change it and I have been blessed to find out early! I am a survivor, not a victim!!