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Help for the Journey

I don't want anyone to think (including myself when I read these posts in the years to come) that we have dealt with dementia beautifully and without struggle. I hope that others that are going through this journey with loved ones will reach out for the help that is available! 

First of all, we found a good neurologist (and his staff) that advocated for us and has a great bedside manner! We are so privileged to be under the care of Dr. Lawrence Green in Nampa. His office staff have been equally helpful and have helped me navigate getting the meds that Rich needs. Two of his daily meds cost over $550 per month and we needed help with those costs. I have learned to ask lots of questions, advocate for my husband, call the insurance company ALOT, and never assume anything (like if the insurance covers an occupational therapist). These lessons have been hard won and I've spent many hours on the phone - sometimes in tears! I am blessed with three daughters who are very savvy when it comes to medical issues and I have appreciated their help so much. However, I'm learning to navigate these waters on my own and it feels very empowering! 

Secondly, if you are dealing with someone who lives with you that has dementia, I would highly recommend going to an Occupational Therapist. Ask your neurologist for a recommendation. We went to St Luke's-Idaho Elks Rehabilitation Services and met with Kim. She gave us practical help on how to navigate life with dementia. She helped me communicate clearly with Rich and gave us strategies for times when he is overwhelmed and confused. She suggested putting up a large whiteboard so that I could write the daily schedule down in a place that he would remember to look. We write down the things that are part of his routine so he can feel in control of his day. Activities or upcoming events are written on the whiteboard so Rich can check frequently for what is next on our agenda. Without the board, Rich felt a bit off balance because he never knew what to expect! I am so grateful for the many suggestions and insights that Kim gave to us. It was an essential part of our journey and growth.  

Thirdly, find yourself some family and friends that listen and encourage you. Caregiving is exhausting and scary and everyone needs reinforcements! I try to get out (during COVID I have done FaceTime) for coffee, Bible study, crafting, or taking a walk with a friend or daughter every so often. Rich and I are blessed with wonderful prayer warriors that are praying daily for us. It is essential to have people that you can pour your heart out to every so often. This has been crucial to me!

We have been able to participate in two programs ("Rock Steady Boxing" and "Delay the Disease") that the YMCA offered. Hopefully, they will start again when COVID is under control. The programs were designed for patients with Parkinson's Disease but they graciously included us and I am so grateful. In class, Rich had a posse - a group of individuals and their spouses who were fighting a neurological battle similar to his. We have made friends and encouraged each other with the challenges met and the successes that were gained.

Well, this is all for now. It helps me to remember the things that have helped us and reminds me to continue on with them! Tomorrow we will be attending Family Camp at Camp Pinewood in McCall, ID. I am excited to get some time in our favorite place!!
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