Jenny,
I am sorry to hear that you have come to this point with your Dad's illness, I am glad you have been reading for a few weeks and are getting some answers here for your question at hand.

I have not made these arrangements for my mom yet and I would like to, but like Mary, I have no idea where or when this is going to happen. My sister and myself are trying to keep mom in a facility, but mom gets frustrated and the facilities are often not really equipped to handle her DLB (the one she is currently in wants us to get even more home health care at 20 an hour in addition to the outlandish that it costs for her to be in the facility). Anyway - is there some way to set this up for her in both Michigan and Indiana so that it will be in place regardless of where she is at the time? I so appreciate all the information I get from all of you. Robin, you are the most amazing source of information. I have learned so much from your posts!

Liz

You could make arrangements for both places. This would require that you have a funeral home selected for both places.

Received Brain Autopsy results for Ted today from Mayo Clinic. Excerpt from the pathologist's report: The final neuropathologic diagnosis is Lewy body disease, transitional (limbic) type.

Comment: moderate-to-severe neuronal loss in the ventrolateral cell grouop of the substantia nigra with Lewy bodies in residual neurons is consistent with clinical Parkinsonism noted in this man. Considering the disttribution and density of cortical Lewy bodes and the absence of Alzheimer type pathology, the likelihood that he would have had clinical features of dementia with Lewy bodys (DLB) is high. The available clinical information clearly indicates that in addition to Parkinsonism, he had progressive cognitivie impairment, visual hallucinations, fluctuations, as well as sleep disorder consistent with RBD, which are typical in DLB.

They said cell loss was severe in the subcortical or middle regions of the brain. They said there was no microscopic evidence for Alzheimer's disease. There were no problems with the blood vessels, and no sign of any narrowing of the blood vessels. There was also no sign of cerebrovascular disease or stroke.

For me, I arranged for a pathologist with the help of Mayo clinic, which was lucky. I found that the social workers and staff at the nursing homes were a little unsure about the process, but were great allies when the time came. I also luckily was able to talk with the funeral home. Between my many conversations with them, and multiple copies of the brain donation paperwork, I was able to make sure this most important thing happened.

A couple of BIG things: 1. Make sure you talk to BOTH the facility people (and remind them AGAIN when things seem close) and the funeral home staff. Also, you can never have too many copies--make sure it's on the chart and that ALL staff on ALL shifts are aware of this special request: 2. Be clear as to where the incision will be made if this might make a difference (originally we were told it would be a small incision in the back of the neck--but this particular pathologist did not do so. Because Ted had been military, his Special Forces beret covered nicely (AND I was ok with whatever needed to be done anyways since the brain donation was so important).

Thank you, Jean, from the bottom of my heart. I hope that you are well and coping with everything. Sincerely, Dorthea

Jean,
I too would like to thank you for posting the finding of the brain study and the important tips for others here !