Monday, August 19, 2013

As Published in PRACTICAL ALZHEIMER'S

You can find the original article here....

Written by Rhonda Brantley
 
You’ve heard about Alzheimer’s and dementia for years, but never suspected it would creep into your own home. Much like cancer, a house fire or losing your life savings, we just don’t anticipate bad things happening to us. Those things happen to other people.

The truth is, Alzheimer’s happens and young-onset Alzheimer’s is becoming a more common diagnosis. It was late 2007 when my husband was diagnosed at the age of 61. He could have been diagnosed at 59. Actually, he should have been diagnosed when he was 56.

When you have to hire someone to look after your husband while he continues to run the family business, you know. You’ve raised seven children together and the baby is just nine years old. You have a multi-million dollar real estate business, with land holdings and construction in progress. To off-handedly suggest your suspicions to the man in charge would not be safe.

But he knew. And he hid it well. For years he blamed, masked, argued and fought while managing a perfectly-orchestrated charade of cover-ups. Unable to manage the credit card reader to buy gas or to read and understand contracts. Lost keys, lost funds, lost friends. But when he lost his way while picking the baby up from school one breezy fall day, the gig was up. I could no longer cash the checks he was writing.

I recall now a series of events that led up to what I believe was an accurate diagnosis of mixed dementia. Take his multiple concussions, numerous surgeries under general anesthesia and a long history of hypertension. Add a near death accident resulting in Post-Traumatic Stress Disorder, a stressful career trembling under the weight of a crumbling economy and, BAM, the perfect storm. The storm that rocked the foundation of our family, our business, our lives.

We do lean on Alzheimer’s for treatment and services and most dementias at that time were being treated the same. First Aricept, then add the Namenda. File for your Social Security Disability, get your affairs in order, review your will, check your deeds, go home and wait it out. That’s all you get. Because with Alzheimer’s, that’s all they’ve got.

After trying for years to get a diagnosis, the formality of hearing it came as a relief. Confirmation that someone else knew meant that I could either hide it, run from it or attack it.

Within just a few short days the business was gone, the home and assets were for sale  and we had made the front page of our local newspaper. There was little time to think of what to do next, with reporters calling for interviews, extended family coming out of the woodwork and employees scrambling for cover. Because he ‘seemed’ okay to those who were not around him every day, his condition created its own set of issues. Having a reason to pack up the circus gave me a few moments of peace until I learned he was simultaneously continuing to reassure everyone all was well. That he was fine.

Therein lies the crime when diagnosed so young, with a wife in her early 40s and young children at home to influence and care for. Suddenly, Dad becomes the kid. Early on, we noticed his reasoning skills shattered and a once-shrewd negotiator became a pushover. An outdoorsman who couldn’t be trusted with his own gun, a fisherman who couldn’t navigate his boat in familiar waters, a man stripped of his credit cards and cash to keep him from giving it all away as he could no longer make change.

There were no outreach programs for teens and little to no support groups for young spouses, so I honed my focus. Searching for clinical trials, new therapies and answers, I continued to dole out our life savings for medications not covered by insurance and attorneys to keep the wolves at bay. Social Security Disability Income was approved in under 60 days, but we were in the GAP and earning just $1.74 per month too much to knock us out of any other assistance.

From the day of my husband’s diagnosis, they gave him three years at home. I read every book and magazine available on the subject. My goal from the onset was to care for him at home with the respect, love and compassion that he had always showered upon us: an excellent husband and father, abundant provider, loving and kind. I created a game plan and became the quarterback. Our children blocked and ran the plays. Adamant we would make those the best three years of our lives, we were blessed with nearly five.

With the passing of each month, I convinced myself it could not get any worse. However, each and every week it did. To see the love of your life fall into a daily routine of such insignificance is heart-wrenching, while together we witnessed a once robust and physical powerhouse lose all desire to live. On his darkest days, he would apologize to me for having to assist with his bathing, shaving and dressing. He was humble and grateful, but sad. How must it feel to know you are losing your mind?

Without a good map, I chartered our course with a group of excellent doctors, road trips when we could afford the gas and good food. He came to expect it and I continued to demand it as this essentially became a new way of life for all of us. Our children are better men and women today having navigated through it.

Eventually turning to a journal and then to a blog, I expelled my rawest emotions with both candor and fear. Here and there, peppering the insanity of our days with humor and angst allowed me to cry through it for another dose. It was my plight and my duty and so convinced that it would go on forever and ever, I nearly missed the ending.

My precious husband passed away on Easter Sunday 2012, on the heels of a wonderful day at home. A traditional home-cooked feast, he was giddy all day having mama in the kitchen and our now college-bound baby giving him more attention than ever. Except for a bout of indigestion, there was no pain for him when the widow-maker came to visit.

With an aging population, the tightening of research funds, limited nursing-home beds for dementia patients and the ongoing threat to any assistance for the elderly and sick, we find ourselves at a real crossroads. Not everyone who succumbs to Alzheimer’s will have the support and care my husband received — and most will not know how to find it. Caring for someone with dementia is not a walk in the park. But with knowledge, the right mindset, lots of love, and a full portion of grace, it can happen.

It was the most important job of my life.

4 comments:

  1. tracy.rose@healthline.comAugust 20, 2013 at 1:28 PM

    Hi Rhonda,

    Healthline editors recently published their final list of the top Alzheimer's blogs on the web for 2013 and Diagnosis: Alzheimer’s made the list. You can find the complete list at http://www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs (in no particular order). We encourage you to share your newfound status as one of the best blogs on the web with your friends, family, & followers.

    We also created a set of badges you can easily embed on your site & anywhere else you see fit:

    http://www.healthline.com/health/29280

    Please let me know if you have any questions.

    Congratulations!

    Warm Regards,
    Tracy

    ReplyDelete
  2. Rhonda, your blog is so honest, powerful, and personal. It speaks to the soul. And I believe that is very much the missing link in Alzheimer's research. I support all the existing avenues of research, but I think powerful personal stories like yours speak to a level of problem that medical science is not yet fully exploring—the link to purpose, to connectedness, and the role a break in that link plays in the development of Alzheimer's. I came to this opinion while writing my new book, Forgotten Sundays, a book about father-son relationships. My father had Alzheimer's at the end of his life and the journey changed how I see the disease and our approach to it. Here's a link to the book: http://www.amazon.com/Forgotten-Sundays-Sons-Story-Sidelines/dp/076245248X/ref=sr_1_2?ie=UTF8&qid=1379202559&sr=8-2&keywords=Gerry+Sandusky

    I hope it brings you some comfort, knowing we all make a shared journey. Perhaps our journeys can, in time, help others avoid a similar path. Best wishes, and again, I applaud your courage.

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    Replies
    1. Thank you, Gerry. What an honor for the children and I to receive your note. I absolutely agree. There was too little information on what mattered to us 'in the moment'. We were at war and all I could find were medical journals and articles telling me when to expect another stage or a gauge of where we were in the disease. I find myself wanting to write, needing to write and trying to answer the calls to write from AD and online publishers - just can't seem to get there yet. If and when I find my voice again, it may be encouraging to have you as a resource. Thank you again for your thoughtful words. It validates the issue entirely. RB

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