Support Group

I may presently have early onset Alzheimer’s; but I’m still a Christian who knows miracles still happen

I went to my first Alzheimer’s Association support group last Thursday 8/20/09 with my husband (who is wonderful, by the way). I was the only non-caretaker in the group because my PET scan says I presently am a patient and have early onset Alzheimer’s disease.

At this support group there were some very fine, wonderful good people. Three shared how they were very evidently overwhelmed by the burden of caretaker for a loved one in much latter stages of AD than I am diagnosed presently in.

There was an open forum in this group where people talked at will, or vented at random, or when the facilitator asked them a question directly. I had so many questions in my head to ask that I’d not written down and was concerned I would forget them cause short term memory has not been my forte lately. One of my questions (“what amount of expenses will accrue when later stages of Alzheimer’s disease requires nursing home or hospice care?”) was answered without my asking with a staggering reply of “an estimated ~ $6,000 a month.”

My raised hand never was picked to speak, because I was trying to politely squeeze in between the talkative others, when finally something unexpected happened. One of the most talkative caretakers jumped over my shyly raised forearm and limply bent pointer finger and stared straight into my eyes asking “And how are you handing all of this?” (This person was referencing my recent diagnosis of early onset (age 56) Alzheimer’s on 6/10/2009). For a few seconds I hesitated because I wasn’t sure it would be “allowed” for me to speak my mind freely. I felt this way due to all the unofficial politically correct indoctrination our culture has imbedded into itself that seems to send this coded message out that one can reference other faiths except the Christian faith.

Well, my short-term brain went blank at this point, so I disregarded what were the right words to say; and I just decided to answer what my heart knew was true. And the truth was my own life’s experiences of seeing firsthand, God’s miraculous intervention time and time again in my life.

So I just plainly answered the question to the group saying: “Well, you have to understand, I have been a Christian for 35 years. And although I have gone thru so many hard times like everyone does over the years; I personally have seen miracle after miracle where God has brought me through each hardship unscathed. And my seeing God answer my prayers over and over again throughout all these years with bona fide miracles to boot; has filled my heart with so much faith, hope for the future, peace and even a joy in the midst of facing really hard times - - - that today I am not afraid of my future!! I can face tomorrow with so much optimism and hope because I know God hold’s that future in His safe hands and He will take care of me one day at a time, just like He always does”

Thank you dear readers and friends for all your prayers for me, I can really feel them.

And don’t forget, breathe deeply, laugh loudly, and trust God with your whole heart!

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!