This was the first time that Roxanne was officially diagnosed with dementia. The week following the diagnosis was without a doubt the most difficult week of my life. It felt as if somebody had punched me in gut as hard as they could while simultaneously giving me a very hard kick in the face. Sure the results were not a real shock but its one thing to wonder about it and another thing to see it on paper from a medical doctor. I had been living in the state of denial for a long time. During the shock of all of this I sent out a mass email out to all the friends and family I could think of. I received several responses from many people but one saying sticks in my head that I received from my best friend here in Raleigh: “God doesn’t give you more than he thinks you can handle. I just wish he didn’t have as much confidence and faith in my abilities!” When I first read it I was so upset and mad that I wanted to line up him and Mother Theresa (where the first part of the quote came from) and punch them both in the face as hard as I could (and I have never punched anybody in the face or got in a fight as I don't believe in violence). As time went on I started to truly accepting what was happening, and the gravity of that statement is so very true. I also started reflecting up on the past two years of our marriage and it was as if god had given a blind man sight again. Many strange things and major issues from the past that I brushed off all of a sudden started making sense. It was as if I was staring at a pile of puzzle pieces one moment and then a completed puzzle the next.
On December 31, 2007 we visited a neurologist and he diagnosed Roxanne with FTD (Frontal Temporal Dementia) with a possibility of Alzheimer’s. FTD is a disease where your frontal and/or temporal lobes of your brain deteroriate over time. FTD sufferers experience a wide range of symptoms and no two FTD cases are exactly alike. Each case has its own unique symptoms. These lobes of your brain manage reasoning, planning, motor skills, emotions, problem solving, and behavioral control.
Many of you are probably thinking how long has this been going on? To the best of my recollection it’s been about two years. I say this as two years ago she got her first horrible job review ever. At that time she had a change in bosses and at that time had attributed it to the boss. If it was just a bad boss I would think the review would be average instead of horrible. Before this review she always got great reviews and had an excellent work ethic. I also started noticing her inability to give direct answers to questions. This all went on for about a year and a half slowly digressing until the summer of 2007. During the time before the summer of 2007 I attributed our issues to marital problems, the fact that I was working night shift while she was working day shift, and we had a new baby in the house. During this time period I also made several attempts to talk to her one on one about marital issues to which she was always responded everything was fine and there are no problems. During the summer of 2007 until her diagnosis she took a huge turn for the worse. Family and friends started noticing and making comments and it really started to affect the marriage and our son which eventually drove me to seek help from the medical community.
For those of you who have not had the pleasure of getting to know Roxanne she was a wonderful friend, an incredible wife, and would have been an awesome mother. She had a great work ethic and had built a strong career as a data analyst in the clinical trials industry. She was an incredible aunt to all her nieces and nephews and treated all the kids as if they were her own. Roxanne was one of those rare people who always had a positive outlook on life and would smile and say hi to you if she passed you walking down the hall even if she did not know you.
For Roxanne it's too late as her beautiful life will be cut short as FTD is a fatal and irreversible disease. Though this ordeal I am becoming a changed man. I now view charity and community service in a totally different light, and I hope that though Roxanne’s situation you will too. It’s time we all try and raise the awareness of those around us of such an awful and dreadful disease so that monies can be raised to fund research to find a cure. I am now a member of a community I knew nothing about shortly ago, and did not want to become a member of but had no choice. Its time we all take a stand because you never know if you or another loved one may be the next member of this dreaded community.
July 21, 2009 7:36pm
We had a beautiful service at Edenton Street United Methodist church here in Raleigh this past Sunday. For me it was much harder than the service in Florida as Roxanne and I had so much history at that church. Giving a eulogy for her ten feet away from where we said our vows eight years ago today was very surreal and felt very odd. I held it together pretty well except during the slide show that was done by Roxanne’s friends and when I first started looking at the scrap book my sister did (I completely lost it). I am going take those two items, all the letters written to Carson on behalf of Roxanne, all the cards and some personal effects of Roxanne and put them in some sort of engraved keepsake. In the coming years when Carson starts asking questions I will present to him so he knows what a wonderful lady she was and will know how much she truly loved him.
I want to thank all of those who came out. It meant a ton to the family and showed what a well respected, caring, and loving person Roxanne truly was. Thanks to Patty, Leigh and anybody else who contributed to the slide show it was awesome. Thanks to my sister Holly for the incredible scrap book. You folks have no idea what those two things alone meant to me as it’s sometimes easy to forget the fun things in the past when you are so tied up in the present and what Roxanne had become due to FTD. Although I looked though tons of my own pictures that brought back many memories in preparation for the memorial, the slide show and the scrapbook really hit home and truly helped me relive all of the good times we had in our pre-FTD years.
I look forward to bright future but will never forget my wonderful past. Though all of this I have become a much wiser, patient and caring person (but still have a ton to learn). I have never seen or experienced the level of unconditional love that Roxanne’s parents and family gave her in her last year. They truly made her last years amazing as they went out of their way to give her the life that she deserved. I am in the process of refocusing my life on Carson, work , and having fun again. If you are local don’t be surprised if you start getting emails and phone calls from me asking to do fun stuff. You see I have to do this, as my social planner is no longer with us to carry out these tasks, but she is with us in spirit and that is what she would have wanted.
In closing I want to thank Roxanne’s family for taking such good care of her and supporting Carson and I, my family for all the local support, countless friends who checked in on Roxanne and Carson and I, the Alzheimer’s Association of Eastern North Carolina www.alznc.org , COPE Elder Care www.copeeldercare.com, Tia Willin www.caringbridge.org/visit/ryanwillin (the first FTD caregiver I spoke to), Bob Hoffman www.bhoffcomp.com/coping/shirley.html (was the first FTD personal site I stumbled upon which made me realize the horror that was unfolding), the UNC Memory and Cognitive Disorders Center, my local FTD Support Group (you guys rock!), my employer RMSource, my work clients who asked and kept up with things, this wonderful site www.caringbridge.org, anybody else who helped us out that I unintentionally left out (you know who you are!), and last but not least the good lord for making things turn out the best they can despite such a bad situation.
Oops, forgot about mentioning a Fund raiser for FTD. Roxanne and I met in the Raleigh Jaycees years ago and we were both quite active. I was contacted a few weeks ago by a member about doing a fund raiser for FTD in which the proceeds would benefit The Association of Frontotemporal Dementias or www.ftd-picks.org. We are tentatively going to have an event at Adventure Landing in north Raleigh on September 19th. Bring the entire family out for mini golf, video games, go carts, laser tag, and a lot of fun! Thank you to the Jaycees for doing this as it’s a great honor and the money will be going to a great cause. It’s not on the Jaycee calendar yet, but check with their web site in the coming weeks for more details. www.raleighjaycees.org
Last but not least to Carson and I’s guardian angel, I will always miss you and will love you forever.
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