2 years in since crisis mode

Dear Community,

Thinking of you all this morning and the support you've so graciously given here. Today I am reflecting and processing.

Some days are for surviving.

Some days are for crying.

Some days are blurs of exhaustion and overwhelm and confusion and grasping for hope and help.

Today is not those days for me.

Today I have a little more capacity thankfully. As I look back I feel a wee little bit like I might be able to look forward a wee little bit too.

I also thought this might be like leaving a little bread crumb trail for those currently living through the part of this journey I was on 2 years ago. You can go back and see my earlier posts if you think it might be helpful for you to compare today's post to my crisis mode posts.

I am 2 years in since the brain change dad was experiencing reached crisis level and caused me to step in and make hard decisions.

Feels difficult to express. Feels important to attempt.

I've taken a temporary leave from teaching for the past several weeks. I will return in the Fall. I am so incredibly fortunate and grateful to be able to do this. It has also allowed me to catch my breath a bit from time to time and to look back on what we've been through. Years of living in survival mode has had an impact on my well-being, for sure.

I hope I'm wrong, but I have a feeling many others will also travel on this brain change journey sadly.

Dad has lost a lot of language. I still struggle to know what's right for his care and still struggle to push for help with the right meds for him to help him through this tough road of decline that is Alzheimer's - especially his anxiety. It has got to be so hard for him.

Our society does not understand brain change. Sometimes I wonder how I might find my own little corner of contribution to the greater good -- maybe by finding a way to help bring change through education alongside other family caregivers with some sort of community support organization. I think of how patients and families living through cancer treatments in the earlier years worked to bring changes and support networks for future patients and families that folks are currently benefiting from and continually improving. During one friend's cancer treatments, she shared with me all the ways community organizations were supporting her. I know you all already know that we need further development of this type of support and community for PWD and caregivers and especially so for those doing the caregiving at home as their own usual support people pull away or disappear completely.

We are such a vulnerable population. So hopeful for treatments and ways to make this awful condition better. Dad was so hopeful about his memory treatment center and the earlier infusions he was getting.

And he was doing so well… until he wasn't. And then the change was big and scary and dangerous. There is so much folks do not understand about our loved ones' journeys and what it does to PWD and their loved ones. Stepping in to protect from scammers while also trying to protect their independence is a heavy load. Then watching your vibrant loved one slowly fade away into the long goodbye. Well, it feels like it's too much some days.

If you have the capacity today, I'd appreciate hearing your thoughts on the brain change world and what wise steps you can see on the horizon from your perspective. 

I feel protective of dad and his story. I also feel that it could help others.

I know many do not understand anosognosia and the reasons/ways we just must step in to protect our loved ones and ourselves and our communities from the choices PWD and people living with broken reasoners might make.

I appreciate you all so very much. Thank you for being here.

May we be well, 💜

Jen