Thoughts from Harriet

The realization that I had something seriously wrong with me was stunning!! Putting all the systems together and talking to our family Doctor about them was a shock. He did a cognitive test that I completely failed. I was put on a waiting list at University of Michigan to see a Neurological Psychiatrist. After waiting for almost a year, we went to a local Neurologist. I totally failed the test he gave me, as well. Both Doctors diagnosis was that I had Alzheimer’s. Dave was studying and reading everything he could about it. He found out about Mild Cognitive Impairment and that Mayo Clinic has a program to help improve your memory. He sent my paperwork to them and they replied that I was too far along for their program, but that if I had an in-depth study with a Neurological Psychiatrist, they would reconsider. My Neurologist, Dr. Sherman, referred me to a doctor at St. Joseph Mercy Hospital, in Chelsea, Michigan. I had a five-hour test and failed it miserably. He said I didn’t have Alzheimer’s, I had Frontotemporal Dementia. He said everyone likes to talk about memory loss, but the problem isn’t really memory loss, but brain damage.

I’ve been reading through Midcourse Correction – part two, again. My brain really has to take more time to read and process, and that is true for many areas for me. It takes me longer to read a menu and choose what I want. The reason that happens, because if I have too many choices, I get confused. It really is painful to fill out all those sheets at the doctor’s office. They want so much information and it is difficult to focus on one area at a time. It’s all so overwhelming.

I used to write and send out lovely Christmas letters and cards. People loved getting them. When did I stop doing them? I can’t tell you, but thinking about it now, I realized that I’d become unable to do them.

How sad it makes me.  These are just a few of the many losses, small as they may seem, but when you add them all up, and know their cause is brain damage, you know they are gone forever. Plus, it’s frustrating and frightening to realize, it is only going to get worse.

I’ve never been a good sleeper, but it is much worse now. I went through menopause at a younger than average age. As Dave talked about it, our romance was a difficult area. I had a lot of problems, as did he did. I tried to get help from my doctor. I told her the problems I was experiencing. and she always responded, “Oh no, you are way too young for that!” She was no help at all! My memory was terrible, my interest in sex was zero, I felt miserable all the time. None of it was Dave’s fault. I had no idea what was happening in my brain.

 I was always exhausted! I was years away from real help. I had this other health issue that clouded what was seriously going on in my brain and no one knew it.

I feel so sad about what this awful disease has done to my relationship with my wonderful husband. He is so kind and loving, he takes such good care of me!

It is so hurtful to hear the stories of the many people who go through this tragedy. It is painful and heartbreaking when we hear and experience people being rejected because of their dementia    Generally, we don’t look sick, which makes some people believe that it is just normal aging, not dementia.

If you know someone with dementia, are a caregiver, or a care receiver, take to heart what we share.

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