Alzheimer’s Diary

Alzheimer’s Diary Note: from Friday 6/12/2009

The bad part of waking today:

I woke up crying this morning at 4:30 AM with a cluster headache with naseau (as my brother Brian calls it; or a migraine (as my dear next-door neighbor and friend Sheryl calls it ). I just call it one big pain in the head!! Well, I prayed not to let me have the nausea. I hate throwing up. But no matter what kind of headache you call it; they are terrible.

The good part of waking today:

I woke up reflecting on the wonderful dinner last night. Our church’s associate Pastor Pieter DeVlugt and his wonderful wife Noreen took us to dinner last night after hearing of my AD diagnosis and because they would be leaving for vacation in a few days. We enjoyed so much their company and the laughter of shared stories going back and forth. I remember especially when they prayed for us, before we took off in our separate cars. I couldn’t take my eyes off their faces that night, so thankful to God for the love we all felt.

But as I lay in bed today I remembered that when we ended those ongoing parting see you when you get back’s, my eyes finally rested on Tim’s face as we continued those long goodbyes that don’t end because you keep finding more things to say and hugs and more “see you on Sunday” wishes. I just couldn’t stop looking at their faces and finally my eyes rested locked solely on Tim’s face alone. He looked so handsome and tall. I remembered how much I loved his always smiling face and his height when we first met. I loved his height cause it made me feel so small and protected! But this morning as I woke up, I found myself surprisingly crying as I pondered all of the wonderful time last night. And I just couldn’t understand it; or stop those silent quiet tears skiing down my cheek. At first I thought I must be sad about the Alzheimer’s and those lost brain parts in my damaged brain lobes the neurologist says are causing dysfunction. But I don’t think my brain was listening to my heart at all!!! Cause as I wiped away the sleep’s obviously uninformed-brain-fogged-you-don’t-really-know-what’s-going-on-in-my-heart-tears, I realized I wasn’t sad at all!!! I was crying silent tears of joy and thankfulness as I feel so loved and grateful for God and every loved one in my life!

And I wish everyone could know what it feels like to be loved this much by God, family and friends. I am so truly blessed!!.

Hugs, Patrice

Early onset Alzheimers

Wife 56 with Alzheimers!

Well folks, I am going to give this a try! !

I will start with a little background about my wife and I. We have been happily married for 15 years. This was a second time around for both of us, and as the old song goes: “ Love is lovelier, the second time around, just as wonderful, with both feet on the ground”! This song was very true in our lives and hearts then and even up to now! At the time of our marriage, my wife’s daughter Thalia , was 19 years old; and my daughter Brittany was 3, with sons Adam 6 and Nick 9. You may have figured out that there is an age difference between us, as my wife is 9 years older than I; which really works for us cause I was looking for someone mature and grounded. And as my wife was looking for the same, she confessed she considered me as her own “modern day Jimmy Stuart”; even stealing a famous beloved line in the Stuart film “It’s a Wonderful Life”; where Jimmy Stuart’s Dad in the film tells him (and my wife told me also) “Son, you were just born old”.

Everything was going really well for the first 5 years until my wife started to become very ill and then after going thru15 HMO doctors, a neurologist finally diagnosed her with fibromyalgia in 1999. This fibro had an evil bag of tricks that included: debilitating chronic pain that required a wheel chair part time, chronic fatigue syndrome and severe cognitive problems. Her health deteriorated until 2001 when she could not work any longer and finally was disabled thereafter.

With the chronic fatigue one can sleep soundly for 8 hours or more, and wake up exhausted upon rising or just after a few hours later. With Fibro, one can also get a lot of “brain fog”. So all activity is planned in moderation and even fun activity has to be budgeted to retain energy. Well, since about 2006 her “Fog” has gotten a lot foggier. We have been battling this fog in my wife’s brain for years now crying out for help, but sometimes it seems the health system shrouds a fog far worse of it’s own, as whenever we go to the doctor’s, it seems we have to fight for everything, even for more minutes more over the 10 minute rations of time that is the norm these days.

Well this last doctor, a neurologist, said to her “I cannot find anything wrong with you other than Fibromyalgia-related cognitive disability because your MRI came out normal. If you had Alzheimer’s it would have shown up on the MRI, you don’t have AD. (We didn’t know at this time that a Pet Scan was the test needed to be done) Finally, as he turned his back on her one more time walking our the door to the next 10 minute patient; my wife totally out of character, stomped her foot and yelled to his back: “No!! So, what am I supposed to do, just keep getting worse and worse and worse!!” It stopped him in his tracks; and he said ”Okay, I will order a Pet Scan”. Well the yelling did it, cause he ordered a Pet Scan in April 2009 which showed brain damage and a diagnosis of Early Onset Alzheimers, and she was put on AD medicine right away.

We flew out to New York City’s Neurology Institute at Columbia’s University’s Presbyterian Hospital’s Neurology Institute for a second opinion from the renowned Dr. Carolyn Britton and she confirmed not only was it Early Onset Alzheimer’s disease; but that my wife had had it since my wife was in her 40’s (just around the time fibromyalgia started and all the awful cognitive problems fogged her days.)

There are many concerns on my mind these days, namely because my job pulls me away from the house every day and I am not able to spend as much time with her as I would like. I am working on ways to work 2 times a week outside the home and then eventually being able to run everything out of the home. We have no long term health care plan as most people do not plan for that until 60 or so. She does have disability Medicare which is a God send; but we need to make changes in supplemental medical insurances because the choice of primary physicians and neurologists that are basically “Medicare doctors” seem to all be substandard.

I am doing this blogg to share our experiences thru this juncture of our life with others but hopefully also have our readers share and perhaps encourage others living with loved ones with AD.

God bless!