JOAN’S BLOG – MON/TUE, FEBRUARY 1-2, 2010 – MEET TRACY MOBLEY, A SPOUSE WITH DEMENTIA, AND READ HER GUEST BLOG

This is the first in a series of monthly blogs on the view from the other side – the spouse who truly understands the struggle to live with dementia, because she has it. Tracy Mobley was diagnosed at age 38 with Early Onset Alzheimer’s Disease, a diagnosis that has recently been specified to Frontal Temporal Lobe Dementia. Tracy has spent the last 7 years writing, speaking, advocating, and educating people on not only how it feels to have dementia, but how others’ actions toward the person with dementia impact their emotions. She has written a book – Young Hope/The Broken Road, and started a respite camp for children of dementia patients to be able to enjoy some fun and peer support – Camp Building Bridges. It is my great honor to introduce her blog today – Pain of the Heart. It speaks about a subject we have discussed often from our point of view – family denial. Now we are privileged to hear the “view from the other side”.

Pain of The Heart by Tracy Mobley

Family in denial is a very powerful weapon when it comes to dealing with dementia. That is the case in my family. I was diagnosed with Early Onset Alzheimer's Disease in 2002, which was later changed to Frontal Temporal Lobe Dementia by ruling out certain medications and the waxing and waning of certain behaviors.

My family's words to me were, “You're too young to have this disease” and “There might be something wrong with you but it isn't that!” Hearing those words were very devastating to me, not to mention it broke my heart knowing that they were not there for me or my husband and son in time of need. In my mind I felt like they were telling me that I was crazy as well as treating me as such.

I remember a time that the medications became less effective and I became very aggressive verbally and had to be put in the psychiatric unit by my husband. The anger that I felt at him for putting me there was indescribable, but it turned out that the medications that I was on were not as effective and I needed something different. I was only there for three days, three of the longest days of my life!

My Mother has since passed away and I have six siblings left. My heart hungers for their love and attention and most of all them believing I really do have FTD, not to mention we could use their support once in awhile. But once again, they are still in the stage of denial. I have played a pretty good lie these last seven years going on as nothing bothers me because they haven't been there. I have cried myself to sleep many a night wishing they were here for us. I have tried educating them in every way that I know how. I have sent them information from our local Chapter, I have sent them doctor's notes. I even wrote a book, Young Hope The Broken Road which can be found on Amazon. The purpose of the story was to hopefully help my family believe in my diagnosis and how much they were hurting me by ignoring the facts. There is a specific chapter in the book titled, Family In Denial and that was the chapter that I hoped would bring my family closer together, however it only brought much heartache and anger from my family. That turned out to be quite detrimental to me rather than helping my situation as they took the story all wrong. They felt I was badmouthing them, which I was not. I was just trying to get the point across that their denial was hurting me. My book has been known to help many families that are in denial though, so I guess it met its purpose. It just wasn't in the cards for me.

I remember when I was a little girl, my brothers and sisters were everything to me, I looked up to them as they could do no wrong. So strange how youth is blinded. I would never have thought in a million years that I would be abandoned by them. The pain in my heart still hurts for them, because if the table was turned, I know I would be there for them. I guess having loved ones such as family, but yet not having them believe in you, especially in your greatest time of need, is one of the greatest pains of the heart there is.

©Copyright 2010 Tracy Mobley

I thank Tracy for presenting us with her perspective. As I wrote in the blog announcing her addition to the website, I have wanted to offer the perspective of the spouse with the dementia since the inception of this website, but it has been a struggle because most people with dementia have a difficult time expressing themselves. The more we understand their feelings and motivations, the better we will be able to help them and ourselves.

Tracy’s blog gave me a lot to think about. In all the time we have been discussing family denial, it never, ever occurred to me how it would affect the person with the dementia. I was surprised to find out how much it hurt Tracy, and how betrayed she felt. I hope everyone who reads this who has a family member in denial will share it with them. If it brings just one family member out of denial, we will have accomplished something positive.

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