Hello @greff I am sorry to read of your wife's diagnosis and your path as a caregiver. My MIL had early onset dementia and my wife fought many dementia-like symptoms during her 14+ year war with brain cancer.
I know every patient, the disease, and their fight through it is unique so I offer only a couple of lessons I learned during my years of caregiving. As a counselor none of these are probably new, but just in case.
First, I saw my wife's family lose (or waste) many opportunities to settle matters early in my MIL's disease progression. Then all of a sudden that window closed and they were left to wonder 'what would Mom want?' or 'what would Mom have wanted us to decide here'. It was unfortunate for everyone involved for sure.
My wife and I used this lesson well and she and I had many extremely difficult, but just as necessary, discussions on significant issues immediately upon her diagnosis. Many were mundane legal/estate issues, but included financial and medical POAs, advance medical directives, appropriate HIPPA approvals for sharing medical information, living wills, etc.
After those we then moved on to the far more personal issues as she made decisions on her final wishes, giving certain personal items to family and friends, made plans to make some amends, and more. As tough and at times uncomfortable these discussions were, they paid huge dividends by bringing my wife a tiny bit of peace of mind, helped me be a better guide for her on her path, and turned out to be extremely helpful to our adult children who were able to totally avoid those 'what would Mom have wanted' questions.
I wish you strength, courage, and peace
Thanks Scott for your insight and encouragement. I have the POA's set up, wills written for both her and I, and my children assigned as executors of the estate. I still have to get some other stuff done but we're making progress I think. Your right about the kids. Mine don't like those discussions but I still have to include them so that they are able to take over in case something happens to me. I'm not in the best of health either. All of the banking, medical, and other financial entities that we work with have POA's on file. Man that makes a huge difference. Without them it is impossible to get things done. I learned this lessen when I was my brother's caregiver when he was dying from lung cancer. I'm thankful that we signed medical POA's given me the decision making rights to care for him. I have and am still learning about taking care of all that stuff ahead of time instead of waiting until it's too late. There is alot to do for sure.