Younger Onset Alzheimers: The Epitome of Unfair

28 Monday Mar 2016

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Early Onset, Face of Alzheimer's, Grieving, Ruminations

Tags

alzheimers, alzheimers caregiving, alzheimers end of life, alzheimers grief, dementia, missing jim, younger onset alzheimers

Photo Credit: The Garner Foundation

I know we can all agree there is plenty in life that’s unfair, but at the moment one specific example is on my heart.

Not that long ago, Karen & Jim Garner and their children were just like any other family. However, all of that changed when Jim was diagnosed with Younger Onset Alzheimer’s Disease at age 48. Jim had a long successful career in the Air Force, and pictures from just a few years ago show a strong, handsome, athletic husband and father of two young children.

This weekend, Karen added a new post to her blog, Missing Jim. If you follow the blog you know that Karen writes with a raw, pull-no-punches honesty. I have such respect for this woman’s courage and grace. The blog is a story of true love, unexpected moments of joy, the kind of loneliness only this disease can exert on a wife, and a sense of loss that defies all logic.

In February, Jim began receiving hospice care. His decline has been swift. As I read Karen’s latest post, it reminded me of my own internal struggle in those last days with Mom. On one hand, wanting to let her go to a peaceful place where she would be whole again, yet on the other hand wanting so badly to hang on to her forever. I can’t imagine being a 46-year-old woman facing that clash of emotions as she watches her husband near the end at the hand of this horrid disease.

Please read and share Karen’s March 27th post titled, I Got That Dreaded Call. Keep this family in your prayers, and share their story. Help Karen educate the masses.

“I want people to see what Alzheimer’s Disease does to a wonderful human being. I want to break the misconception that Alzheimer’s Disease is just old people forgetting someone’s name or getting lost. I want to erase the stereotypical patient idea.” ~Karen Garner

Dear Mom…

14 Monday Dec 2015

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Grieving, Holidays, Inspiration, Life After Caregiving, Mom, Ruminations

≈ 8 Comments

Tags

alzheimers, alzheimers grief, dementia, grief and loss

Dear Mom,

Time is a strange thing. It’s impossible to believe that tomorrow you will have been gone from our world for three years, yet sometimes it feels like forever since I’ve seen your face. And believe it or not, there are still moments when it doesn’t seem real at all that I’ll never hold your hand again. It’s those moments, when they strike, that move me to tears.

The years have dulled the pain, but there are still moments when it cuts deep and the wound feels fresh and unbearable. There are a million things I wish I could share with you – oh how proud you would be of Jess. The things she’s accomplished, yes, but more importantly the loving, kind, bright, introspective, and passionate human being she is. In the past few years, I’ve seen her blossom like never before. You would be so happy. I see a lot of you in her.

You know, we went to Italy this fall. That was a trip the three of us meant to take, but it never happened. We felt you with us, though. We saw so much that you would have adored – Florence would have been your favorite place, I’m certain of that. It felt fitting that we spend your birthday in a spiritual place, so we toured the Vatican that day. Such beauty – overwhelming to the eyes, the mind, and the heart. How I wish we’d had time to take that trip together before Alzheimer’s came into our lives. Tomorrow is never promised, though, is it?

I still feel angry about the time we missed together; I don’t dwell on it, but it’s there. If you were alive, you would have turned 79 in October, and had it not been for that abysmal disease, you would be a young, healthy, active, and vibrant 79. You would be enjoying retirement, travel, friends, and holidays. We might be baking Christmas cookies right now.

I’ll never understand why life unfolded the way it did, but I vow to make the best of every day because I know that’s what you would want. Even during your long illness, you taught me so much, and those lessons continue to enlighten me three years later. Life is beautiful… and it turns out, the little things are really the big things. I never want to lose sight of that.

In 2016, there will be a new non-profit launched to honor your beautiful memory. We’ll do wonderful things with the money we raise, both to support caregivers and families living this horror right now and to help obliterate Alzheimer’s forever. Anyone who knew you knows you had a way about you – you seemed bigger than life itself, and I promise to keep your memory alive today, tomorrow, and always.

Keep sending the cardinals…

I love and miss you dearly, forever and a day,
Ann
xoxo

Getting Through the Holidays with Alzheimer’s

19 Thursday Nov 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Caregivers.com, Eason House, Holidays, Life After Caregiving, Mom, Ruminations

≈ 6 Comments

Tags

alzheimers, alzheimers and the holidays, alzheimers caregivers, alzheimers grief, dementia

As the holidays approach, stress levels tend to rise and expectations (often unrealistic to begin with) run amok. It can be a recipe for the ultimate disaster if we aren’t careful. Chances are, if you’ve been a caregiver for a while and your loved one is in the advanced stages of the disease, you know all too well what I’m talking about.

But for those who may be less seasoned, I thought it would be a good time to share a bit about how our holidays changed as my mom’s condition deteriorated – and how we coped (and are still coping today).

Check out Holiday Hoopla: Don’t Let It Get You Down. My hope is that this short piece may help you create reasonable expectations and limit your own heartbreaking disappointments.

Holiday Hoopla was written in 2012. Mom had taken a turn for the worse in the late summer/early fall and I believed we had reached the end of the road. I canceled a pre-paid trip to Mexico at the last possible minute in September, but to everyone’s surprise, she began to bounce back a bit.

By the time Thanksgiving rolled around, Jess and I were emotionally and physically worn out. If there was any chance of making it happen, we really needed a couple of days away. Mom seemed to be doing well, stable at least. She wasn’t having the horrible days and nights that we’d experienced in September and October, so her caregivers encouraged us to take our Chicago trip.

Happier holiday times, circa 1990. Mom, age 54

They reassured us she would be just fine, and after much deliberation and a healthy dose of guilt we packed our weekend bags and drove to the Windy City. I knew Mom would be well cared for, and we would be better for having had a few days away. If anything happened, they would call and we could head back immediately.

Although we were on edge Thursday and Friday, receiving no phone calls led us to believe things had at least remained status quo. What a relief! Or so we thought.

We drove back Saturday and arrived to find the wheels had essentially fallen off the bus in those 72 hours. It was a steep decline and one from which Mom wouldn’t rebound… On December 15, 2012, she earned her angel wings.

We still go to Chicago for Thanksgiving – it has become our new tradition. The trip gives us something to look forward to instead of spending three weeks dreading the impending holiday. It’s not the same as the wonderful Thanksgivings we had as a family; however, those times are distant memories. November and December will never be what they once were. But, life must go on…and it does.

However you decide to spend the holidays, I wish you joy and peace – most of all peace. Remember that only you know what’s best for your family and your unique circumstances. Be well, my friends. Happy Thanksgiving to you and yours.