Hello @sturg9876 Nice to e-meet you here on Mayo Connect. I am Scott and I was one of the secondary caregivers for my MIL during her years with dementia. I also was my wife's primary caregiver during her 14+ year war with brain cancer, which produced many dementia-like symptoms for her.

One of the most valuable things my wife and I did immediately after her diagnosis was to complete all of her end-of-life planning. We did all the usual things, such as wills, estate planning, etc., plus she had several items she wanted to gift to others, which she did while alive. This brought not only her, but the recipients too, a great deal of happiness in tough times. We also did all advance directives, POA decisions, and HIPPA decisions. As odd as it may sound the HIPPA decisions helped a ton! We put our adult children on the form so the doctors could talk directly to them and vice versa, which was a terrific help to them and especially to me.

She also had very specific ideas about the Celebration of Life she wanted rather than a funeral so set those up as well. It was nice to know exactly what she wanted and not have to guess.

Her mother did not do these things and it made the time of her death far more difficult for her family. My sister, who passed from COVID also did not do any advance planning and it has become a mess for her daughter to have to sort through.

I also know in my wife case her mental condition/capacities, etc. changed with no notice and at very different times and what we could do one day we couldn't the very next. It did teach me that caregivers need to be ready to be flexible as the journey zigs, zags, and swerves unexpectedly.

Feel free to ask any questions -- I'm always happy to share what I learned.

Strength, courage, and peace

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