Day 28: One Year Later

It’s been over a year since we had Seniorlink in our home filming “MY WISH”.  It was such a fun day and I enjoyed the team and the production crew. I know the video has made a huge impact to caregivers in the Alzheimer’s community. I’m thankful that Bob, my husband and caregiver, is getting the support he needs and that people realize family caregivers need extra love and support.

So much has changed since then. One of the biggest changes since filming was losing support from my oldest daughter Danielle. She has struggled with addiction for many years and unfortunately, relapsed in December of last year. I haven’t seen her since then and have only talked to her once. Losing her support was devastating and I’m sad that I don’t have her to help me. However, I’m hopeful that I will see her again when she’s ready.

I’m still active in the Alzheimer’s community, sometimes not as much as I would like to be! My role as an Alzheimer’s Association Early Stage Advisor has ended, as my term was for one-year. The time flew by, and I miss the meetings and the work I was doing.

I’m an extrovert and don’t like having too much down time. I try to stay busy and when I’m home alone I go to a fun restaurant and eat outside and enjoy the sunshine. I find I need a lot more rest now. Even still, on days where I don’t have any plans scheduled, I get lonely and depressed. I haven’t had any speaking engagements since the Alzheimer’s Association Advocacy Forum in Washington DC last June.  I am, however, excited to be part of ‘Your Brain Matters’ in Santa Barbara and their local Alzheimer’s Association fundraiser later this month.  It’s an interesting dilemma because I want to be busy and involved and to use my voice to raise money and awareness, but I don’t want to take on too much for fear of becoming overwhelmed.

Bob is still traveling for work and I spend some nights alone. Thankfully, my “village” of family and friends are close by.  They have all been amazing, especially my daughter Kristen. Two of my best friends visited me and supported me this past year, which I’m grateful for. Between taking me out to lunch, accompanying me to doctor’s appointments and even spending the night to ensure I’m OK, I’m feeling loved and supported knowing I have my friends and family to lean on when I need them most.

Things are harder for me now. I’m making more mistakes, forgetting more conversations and repeating myself frequently. I’m struggling with technology but still do OK on my phone vs my computer. One day I left the garage door and the front door open as well as the burner on our stove on! The scariest part of that day was that my cat Rusty escaped. Thankfully, we found him wandering around the side yard. I consider Rusty one of my caregivers, as well -- always by my side and comforting me.  Cats can be caregivers, too. That day was a wakeup call and since then I’ve been trying to slow down.

I’m pleased to report I continue my reign as the top individual fundraiser for the East Bay Alzheimer’s Association Walk. During walk season, I’m in full-time fundraiser mode.  It takes a tremendous amount of my time, but it’s so worth it and I’m beyond grateful for the continued support from my family and friends, especially my former colleagues at Intel.  Together, we raised over $33,000 This year. Yippee.

My emotions are raw now. I’m not depressed but for some reason things just get to me more often. They hit me hard and the tears fall frequently. Organizational activities are extremely difficult.  A few days ago I tried organizing my desk and had to stop because I was so confused and stressed out.

Bob continues to be my primary caregiver and does a fantastic job.  He’s always checking in when he is away – sometimes calling multiple times a day.  He does most of the shopping and cooking, but I continue to help with salads and easy things like that. He’s aware of the changes and we do the best we can to stay in constant communication. I don’t know what I would do without the constant love and support from Bob and my daughter Kristen.

My wish for Bob, Kristen and Sylvia is the same as it was a year ago. Please take care of them! Reach out to them, let them know you are concerned. Take them out to lunch, shopping or for a coffee. Walk with them at an Alzheimer’s Walk, donate to the cause, smother them with love and support. They have the hardest job in the world. They see me changing and can’t do anything about it, they have fear and sadness. Please help them through this journey.

 

My Wish - An Alzheimer's Story from Seniorlink on Vimeo.

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