One of my hopes for this space is that someone in the early stages of their Alzheimer’s journey will stumble upon a sentence or paragraph that brings them comfort or validates their feelings.  Somehow there is a measure of peace in knowing that you aren’t the only one who has ever had to face this… others have come before you, and many will follow in your footsteps.

Thinking back to the beginning, everything was just so new, and nothing made sense.  For us, these were uncharted waters…  a very scary place to be, particularly with the person who had been my ROCK for as long as I could remember.  Suddenly, I was thrust into control, making difficult decisions, and often being the “bad guy,” when, in fact, I had  no idea what I was doing, let alone what was around the corner.

Those who knew my mom know that she was fiercely independent; a career woman who had worked her way up from a file clerk to a director level position for a Fortune 500 insurance company.  She was a mentor to many and spent the latter part of her career traveling across the United States training some of the company’s best and brightest.  She was always so proud to see her past proteges advance in their careers, and more than one of her underlings made their way to the company’s executive ranks.

I think one of her proudest moments was the surprise retirement party that was thrown for her one evening when she thought she was just going out to dinner.  That night, the President of the company spoke at her celebration – and that is not something that typically occurs.  That night was a testament to the difference she had made in so many lives and the appreciation her peers and superiors felt for her.

She also had a phenomenal sense of humor and people loved to be around her.  When my mom was in the room, there were always lots of laughs and fun to be had by all.  We made so many good memories, particularly after Jess was born.  That child was, without a doubt, the light of her life.

So, when she began to show subtle signs of problems just a few years after retiring, it didn’t seem possible. Finally, in January of 2004, the changes we were seeing could no longer be denied. She had just retired six years earlier and had so many hopes and dreams for her “golden years.”  She wanted to volunteer at Children’s Hospital and perhaps in the school system, and she looked so forward to traveling.  But first, she wanted to just take some well deserved time off to relax and enjoy her new retiree status.

In hindsight, I wonder if she was beginning to realize something was wrong even before she retired, before we noticed anything was askew.  She gradually became more and more withdrawn and we saw no great effort to follow through with her pre-retirement plans. Her days consisted of puttering around the house, doing some gardening, and having lunch or dinner with friends now and then. But as time wore on, she continued to withdraw and her activity level continued to decrease.

Even after she started having increasing difficulty finding her words and began misplacing things, I told myself it was normal signs of aging – or that she wasn’t keeping herself busy enough.  It made me downright angry, because she didn’t seem to be doing anything to help herself.  Now I realize that she couldn’t.  It makes me incredibly sad to think she was trapped in her own mind, knowing something was wrong, but not saying anything to anyone.  What a lonely, scary place to be.

All of the “normal” signs carried on through 2004 and 2005, and while she was showing obvious decline, I just don’t think we wanted to face reality.  Conversations much later revealed that both Jess and I had been concerned for some time, but it was as though if we didn’t say it out loud, it wouldn’t be true.

And then, the winter of 2006 hit us like a ton of bricks.  There were a couple of trips to the ER, followed by short stays in the hospital.  She was having bouts of absolutely – for lack of better term – wacky, non-sensical behavior.  She would call, extremely upset, talking in circles about things that were obviously only occurring in her head.

At one point, she was diagnosed with hyponatremia – a condition where the body’s sodium levels take a nose dive. We quickly learned that extremely low sodium can effect the mind in unusual ways.  A few hours of IV fluids and the addition of Gatorade to her daily routine to balance electrolytes would typically solve the problem for awhile. There were also UTI’s – another big contributor to behavioral changes, and finally, an MRI revealed signs of TIA’s (mini strokes).

That year was pure hell. Every time my phone rang, I nearly jumped out of my skin wondering what would be next…  Indeed, 2006 was when life really began to change for us.  Oh, but little did we know what was in store…

Over the course of the past several years, I’ve recorded some thoughts and experiences on my personal blog.  I was recently sifting through old posts, and they sure did bring back memories.  For instance…

October 17, 2007

Just got home a short while ago from my mom’s doc appointment (and a grocery trip for her). Wow.

I’d made up my mind I wouldn’t cry. Remember, I said I was feeling strong?

I did fine until she was asked to write down a sentence (any sentence) and she wrote, “I love my daughter.” Ahh, close, but GO ME, I held it together, if just barely.

However, when she broke down and cried like a baby, saying she didn’t want to be a burden to me — I was done. Stick a fork in me – done. Poor Doc was getting choked up and I thought she was going to join us in our sea of tears. Thank God, I got ahold of myself in reasonably short order.

Without going into a lot of detail – mainly because I’m tired:

* She voluntarily gave up her car and will no longer be driving at all.

* She was given the dementia test again (I forget the formal name of it) and although the doc didn’t have the last results in front of her, she used a phrase along the lines of “more severe this time” when comparing the two tests.

* She’ll be going for a brain scan to see if she’s had another stroke and get a comparison to the scans taken almost 2 years ago. If she’s having TIA’s, they may or may not show up on the scan.

* She’s trying a new-to-her med, an anti-psychotic intended to stop the hallucinations. I’m praying we don’t have side affects here in the first few days. I’ll be on pins and needles when the phone rings for a week or so.

* She goes back to the doc in two weeks for a follow up.

After the appointment, we talked about things like transferring the house out of her name, getting the details on her long-term care policy, and setting up in-home visits by a caretaker, etc. Tough subjects, but it all has to be discussed and she took everything pretty well, all things considered. Of course, tomorrow, she’ll likely have forgotten it all.

God, I wouldn’t wish this on anyone…nobody should have to go through this.

Next on my list: I need to find a tax accountant I can trust and set up another appointment with my attorney once I have a plan of action.

And that is how it began.  Life hasn’t been the same since.

Until next time…Carpe diem…

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