I understand completely as my husband and I are traveling the same road. When I asked the neurologist for a time line she said, "It doesn't work that way". My husband was first diagnosed in 2016 before surgery for Deep Brain Stimulation surgery-he also has a terrible Essential Tremor. I had suspected cognitive decline several years before his test, but he wasn't open to accepting it at that time. He was tested again in 2019. The second test indicated significant decline in what is called "executive function"-decision making, problem solving, memory, flexibility of thinking etc. His mother had Alzheimer's, so it is likely he is on the same journey. After the second test, he began to accept the Diagnosis. However, it is nearly impossible for him to mentally connect the diagnosis with his behavior. From what I can gather, this is a day by day disease. His primary care physician has prescribed Donepezil, with the comment, it helps slow the progression in SOME people-there is no cure. In short, it appears, that every person's journey is somewhat different, somewhat the same. I'm a planner, so it makes it difficult not to have a time frame. In the meantime, there are things I know we need to do-the neurologist said to get out medical directives and financial affairs in order. I started there along with conditioning my husband to accept the Diagnosis so that he could participate as best he can in the decisions facing us. We need to relocate-my current challenge. Thankfully at this point he is basically independent, but his decision making capacity is declining rapidly which causes conflict. It's a frustrating situation. I've come to the conclusion that all I can do, is the best I can do from day to day. I would like for us to take the HABIT program this winter if it is offered virtually-if I can talk him into it. I've heard good things about it. Also, there are excellent resourses on Alz.org. I've attended several webinars there that have been helpful. We live mid way between the University of KY and the University of Cincinnati. His surgeries have been at UC, they connect with Mayo. UK is suppose to have a nationally recognized research program in dementia, so I want to explore that resource as well. Other than that, it looks as though you might explore getting rid of the gas range and begin building your support network-you will need it. It is important to take care of yourself too.
hi Ann
It seems like my wife is not as far along as you husband and we are lucky in that my wife is very healthy in all other areas (no limitations, no medications) which I guess is unusual for a 71 year young lady. Because of our past careers, we are both VERY skeptical of pharmaceutical claims on the effectiveness of drugs and their side effects.
your comment about “declining rapidly” is kind of scary for both of us. not knowing how this disease progresses is very scary because it’s difficult to plan the future.
Dan