As I approach 365 days since I learned that I have Lewy body dementia, I came across a saying that I tucked away early last year.
Learning that had I Lewy Body Dementia and the ramifications of what that meant to my life was a slow process, one I have discussed before in Getting to Acceptance.
A brief look back on the last 365 days:
1. Getting to Acceptance and going through the process of leaving behind what you thought your future holds takes time.
2. Finding your path takes time. Finding a True North, that thing that gives you joy but can still fit in your current / new paradigm requires thought, communication with your loved ones and of course time.
3. Stepping into the new reality works best with a positive attitude. This is a personal decision for each of us. No one can make you happy, no one can help you wake up positive every day, you must find it in yourself.
4. New Habits take time. If part of your True North is doing something you haven’t done before, like be starting Wandering Lite for Lewy Body Dementia website, then it takes time. Be patient.
5. Daily Motivation. Sometime daily motivation is a challenge for anyone. It should be less of a challenge if you picked something that is your True North, but let’s face it, life can get in the way. For me I can tell you the number of Doctor’s appointments and lab tests I have had struggling to get to a holistic understanding, let alone diagnoses’ my other disease has seriously cut into my time. Almost a year later we have finally come to the end. My disease is an autoimmune disease call Large and Small Fiber Polyneuropathy that also affect my autonomic system, or Multiple System Atrophy (MSA) for short, which shares many Parkinson disease-like symptoms.
6. Fighting depression is still a real challenge. Don’t be surprised if certain triggers bring you back to wanting what you’ve lost and then those thoughts can trigger real depression. I had to see my Doctor and he added an addition antidepressant to my daily pill regiment.
7. Keep active. For me I wanted a dog, I knew the responsibility, and I realized that at some point I may not be able to care for the dog, and it would fall to my wife. But after a long discussion we started looking, and we found Patsy. Patsy is trained as a full Service Dog and is amazing. She keeps me present, active, and we are training her to sense my seizures. This advance training happens after her Service Dog training.
8. Learning Coping mechanism. Things are changing and I need to adapt. For example, reading makes me dizzy and I loose context and it pushes me to “hit the wall faster”. Using audible and text is much better, audible alone works OK, but I do not retain as much. I will write more about other coping mechanisms in the weeks ahead, as there are so many to share.
9. Last, expectations – I use the term “hitting the wall”, I get extremely tired when I try to do tasks that take concentration and cognitive thinking, but even going out for lunch, dealing with people and obstacles causes me to get to a point where I “hit the wall” this is a common complaint for dementia patients, I know I am not alone.
10. Trust the process of moving things to your caregiver. This cannot be done overnight so you have to give it time. Things like financial control, living wills, finances, driving, and maybe memory care all require pre-planning. Fighting or delaying it makes it worse.
One other thing:
Get connected with other people dealing with dementia and other groups. I will work to add sites to my site, but this list will not be exclusive. Don’t short yourself here.