When it was suggested I write this piece, I found myself thinking, how the heck do I do that? After all, to most people, this world in which I live in, is a foreign and frightening place. I'm sure it's really hard for most to understand why I do what I do...but then, they only see it from the outside...
In fact to most of you, I am probably nothing more than the person you have bumped into as you've wandered through this website. But to be honest...I am more than that. You see, most of the time, I have used those words you have read, as a shield. I thought it seemed right to let you go without a personal word. But I can't. There is just to much of my life in here to leave these words unspoken. So here...is a glimpse...into my world....
To begin with, my name is Marsha, and I am the Coordinator of Alzheimer's Outreach. Now to most of you, that doesn't mean anything. After all, you've never met me. For all you know I am just one of a thousand different people who wears a title of authority. But I'm not! Who I AM, is a daughter who just happens to have a mom that was diagnosed with AD ten years ago. And I started this program for her.
You see, our journey into Alzheimer's started long before this program was even thought about. So to tell you what it was like back then; is very difficult. Most of my memories are like faded photographs. The images are still there but the vividness has seeped away. In fact, it's getting harder to remember....what she was even like.
And that's one of the reasons why I started this group. Because it takes so much from everyone.
As mom continued to digress, there seemed so little I could do. I had never been closer to her...or farther away. There were so many times I felt so alone. And the more I tried to protect her, the more this disease took away. But you know, the one thing it could never steal away, was my love for her. And so, that is how it began...the creation of Alzheimer's Outreach.....
To say I started simply...would be the truth. In fact, all I really wanted to do was help one family. That's it...just ONE singular family. To what EXTENT...I had no idea. I just knew I wanted to be there for them. Do you understand what I mean? Whether it was a shoulder to lean on, a sounding board when things went askew, or a person they could anchor to when the seas got rough...that's what I would be for them. And to be honest, I didn't think it sounded that hard. After all, back then, I would have given anything, if I would have had that 'someone'.
Now don't get me wrong, I wasn't foolish enough to believe I would come through unscathed. And I haven't. But I also now have an extended family I cherish more than anything on this earth. So I ask you...what are a few scars...compared to the richness of love?
True, these last seven years have been a real eye opener, and yes, they have changed me in more ways than I can say. But I am certain I am stronger than I ever been before and I know I am a more compassionate and caring person. I have found myself needing and been needed in return, and I have found myself doing things I never thought I would.
You see, anymore, it's second nature to race to the hospital after an emergency call. And there have been times when I have stood beside a family as they've struggled to say good-bye, which isn't easy. You see, sometimes death is not kind. It doesn't always take a person with grace or mercy. So when that happens, there is nothing you can DO, but be there.
But 'being there', is also about miracles. And to me, my group IS a miracle. It's knowing that I am never alone in this...it's knowing that when my soul gets weary...or there have been far to many good-byes, all I have to do is look around and see the faces of my strength. It's their confidence in me, that keeps me strong. It's hearing them say..."you can do it Marsha"...that makes me believe that I can. And I have never known that kind of faith before...but I do now.
But you see, they are the foundation on which I build. And all of the achievements have been made, because of them. I am not afraid to reach for the stars because I have a families love behind me...so impossible dreams, often times, becomes reality. Like what? Well...who would have thought that I would find myself doing consultant work for special care units? Or, for that matter, doing lectures in nursing homes and hospitals? Certainly not me!! But they happened nonetheless. So if you ask me, it's remarkable the feats a person can do, when you have that kind of belief behind you.
But then of course, there is the downside. The times you cry for the injustices being done to these people you love. In fact, there have been more times then I care to remember when I have held someone and prayed that they would believe that everything would be okay. But you never know. Because life doesn't come...with a guarantee. So all you really have, the only thing you have to hold on to...is HOPE. Just one....simple...word...hope.
But....that's a part of life....right? And if everything was done on the easy road...how would we grow? How would we become better people? And how would we ever discover that love is endless and forever giving?
Now please don't misunderstand. I'll be the first to admit that I have made more than my share of mistakes. In fact, there are times when I am certain that I am the weakest person in the world. You see, when something goes wrong, I am easily made of steel. I will bend...but never flinch. I will fight...but never give in...and I will protect my families with everything in me. BUT...once alone....I become completely different. The calm, cool woman falls away, and I become the wounded cat that licks her "hurts" in private. While no on is watching, away from the sight of others...I steal into a darkened corner and collapse. You see there I don't have to be strong. There I can be the child who closes her eyes to the darkness and lets the tears fall. You see, when you DO what I do...you risk it all. So when the battle is over and the disease has won...that is my chance to mourn.
But again, that is all a part of growing. And besides, life is also about human frailties and the lessons to be learned by them. The KEY is choosing how you look at things, and the ways you accept what can't be changed. Yes I shed my tears, but then I celebrate their life...because that was what was important! Not the reason they died.
To this day, if someone were to ask me 'would I change what I do'...I would tell them no. I am one of the richest people in the world because I have an abundance of love. I have more friends than I could ever count, a husband who believes in me as much or if not more than everyone else does, and I have a mother I have grown to realize was a true gift from God. She, is a blessing to me, and an example I will live by for the rest of my life because she has taught me more than I could ever hope to mention.
But do you know what I'll remember most about her? It's something very simple. To me, she is and was.....the truest sense of courage.
I love you mom........
The beautiful poem was written by Dorothy Womack especially for me!
PLEASE DO NOT TAKE IT!
lie here, immobile and seemingly ‘gone’
But I know my daughter when she comes around!
My spirit can feel her, though my body is still
I wish I could reach her and calm all her ills ---
In the quiet of the evening when no one’s around
My heart, it knows, laughter – My mind is quite sound
Sometimes I remember all that once brought delight
Especially, my Marsha – In the still of the night
I reflect on the days when we lived life, so grand!
And I think now of times when I feel love through her hands…
So, please tell her for me – No matter how it seems –
Inside, I’m still dancing – if only in dreams –
And I hear her laughter still ringing in my ears
I see all the struggles that bring her to tears ---
If I had but one moment – that my body, revive –
I’d tell her ‘Don’t worry – Love has kept me alive’
‘It’s the love of My Saviour and the love of my child
Which I keep with me always – and why I’ve survived’
‘When this earthly body must needs fall away
I’ll be with you always – In your heart, I will stay
And Marsha, remember, throughout eternity ---
The gift most important, was the one you gave to me…’
3/28/99 Dorothy Womack (c)
** Dedicated to Marsha Penington, an angel on earth**
To learn more about how AO has grown and what we do, you can find our Alzheimer's Outreach brochure under that name in the Caregiving Directory, on our homepage.