My Dear Friends;
I'm not quite certain how to begin this letter so please forgive me if I stumble around a bit. You see, I'm not used to writing an update on mom. But then, things hadn't changed until just recently....
About a month ago my mom entered the final stage of her life. Technically, yes, she is still with me...but just barely. As her daughter, I struggled with this "final chapter" for many reasons. Most importantly, I guess, because she has always been my foundation. But you know, after a lot of soul searching, I realized that foundations are made of strong 'stuff'...convictions, truths and courage. And once I realized that, I knew I could say good-bye to her and really mean it.
A foundation that is built on love will never crumble. So whether she is physically with me or not, doesn't matter. "Moms" don't leave, NOT if we keep them in our hearts and isn't THAT what matters most??
After 13 years, how can I expect her to continue fighting? Her quality of life is gone. There are no joys...no sunrises, no sunsets. Just one constant day that never ends. When I look at mom now, I see there is nothing left of the woman she used to be. In it's place is a frail body that has been battered by this disease, long enough. She no longer has any muscle control, she has difficulty swallowing. She can't lift her head off of her chest, words have fallen to silence...and time is endless and empty. Would YOU want that for someone you love? No...of course not. None of us do. So truthfully...how can I ask her to stay?
I don't KNOW when her life will end. Maybe soon, maybe next month, maybe longer. But that's not up for me to decide...that's between her and God. In the mean time though, I'll take each precious moment as it comes. And when her final chapter has come to an end, we'll be facing it together just like we've always done. Together, forever....for always.
My mother is now in a catatonic state. She's not exactly in a coma, but nor is she aware of anything that is going on around her. I am finding myself wondering how much awareness she really does have. To look at her you'd be certain there was none at all. Why then, if I can see that, why do I wonder what exactly is reaching her? There are so many things I'd like to know with utmost certainty, but at most, I am only left to guess what she can fathom and what has gone beyond her reach.
I am also well aware that this state can last a long time. It's like she's in a perpetual abyss with no doorway out. I know that may sound strange to most of you...but I am sure that there are many who are nodding theirs heads at the words I have used. It's difficult to relate what this experience is like. You're neither here nor there...just somewhere in between. I will keep you posted....
I know it's been a while since I've updated this page, but there was really no change to speak of. For the most part my mother still remains in her catatonic state. On average, her day consists of sleeping for approximately 23 1/2 hours out of the day and is only roused when it's time for food. Some days she will take several sips of liquid nourishment, but most days it's a struggle to even wake her up.
Of course for the nursing staff, this change in mom has been difficult for them physically too. Before, she was able to be moved around when necessary...but that isn't possible now. For a while, they struggled to work in the room mom has lived in for almost 10 years, but in the end they made the decision to relocate her. Since late Sept. mom has now been 'rooming' with a dear sweet lady very much like herself. She too is catatonic and non-responsive. Ironically, neither of these ladies realizes the other exists, but the one who has suffered from this separation is moms old roomate Rose. You see, Rose was moms 'adopted mom'. She looked after Babe and loved her like she was her child. She'd talk to mom, hug her, sing to her...and when mom was moved, Rose was devastated. She couldn't understand why Babe had to leave. She was happy with mom and felt needed. It was a difficult situation for her to adjust to and my heart hurts for my darling Rose...
But then, I guess feeling the pain of loss is a common occurance with AD. Not just me, you see, but also for the nursing staff who has cared so lovingly for Mom thoughout the years. When I see tears well up in the eyes of a nurse, when I see the gentle touches of comfort mom is given, I know that my mothers waning life has been filled to capacity with love....and who could ask for more than that? So why, I ask, does this type of good-bye have to hurt so many?
As a daughter I try hard to overlook the cruelty of this disease. But then reality sneaks in and I see my mothers emaciated body, or look down at the drawn, haggard, lined features...and my heart breaks. I realize even after all of this time, I want to see her face the way it used to be...hazel eyes sparkling, lips curved in laughter...arms out stretched waiting for a hug....and not a final good-bye.
As for me...the perpetually changing Tay...it seems no matter how hard 'she' tries, she simply cannot break old habits. A few days ago I decided to go shopping. It was one of those wonderful late summer days when you just can't help but appreciate the beauty around you and you just have to be outside. So there I was, wandering from store to store when a beautiful fall sweater caught my eye. Without giving it a thought, I went inside and began a ritual I have done for so many years...I started selecting moms new fall wardrobe. Bouncing from rack to rack, I snatched up this sweater and those pants, creating a beautiful wardrobe that would look wonderful with her silvery hair...but then it hit me. Mom was now bed bound...there was no need for this finery....
But do you know what? As I stood there, feeling somewhat foolish about the blunder, I realized something....something very, very important about myself. No matter how much damage this disease has done to her, I still want my mother looking beautiful. Ok, so maybe she won't wear these clothes very often...maybe some she will never wear at all...but the thing is, is that she loved clothes and she loved feeling good about her appearance. If and when they get her up, she will again be beautiful. The clothes will hide the shriveled sunken body and for those few moments she will shine like always. So I ask you, what's more important...a few dollars maybe wasted, or the joy that comes from hand selecting lovely things for a beloved, albeit, sick mother? I guess that is for you to decide...
I didn't realize when I wrote in the update page that I was not feeling well, that I would be innundated with letters of concern. In fact, I have been so overwhelmed by your love, support, and notes of encouragement, most of the time I have spent in tears.
It's hard to explain exactly what's been going on in my life. And while there is no one to point the finger of blame at for my illness, I am hoping that maybe, through my words, I will somehow be able to reach out to others like me and help them through this troubled time. So here is what has been happening....
My illness began the day after my last visit with mom. As you know I have recently gotten her a lovely new wardrobe and I was so anxious to give them to her. I decided to go on a Sunday since, surprisingly, that is one of the quietest days of the week. So there I was, loaded down with bags of "goodies", and a heart that flew down the hall to mom, long before I physically arrived at her room.
As always, she lay quietly in her bed. The suns rays were shining in and her silver hair was glowing in the early afternoon light. After putting away her new treasures, I sat down beside her on the bed and looked down into the face of the woman who has always been God's greatest gift to me.
I don't know what happened to me at that moment, I have no explanation for it, but I found myself taking her hand in mine and praying to God to release her from this hell she is in. I will not paint a visual image of what this disease has done to her. That would not be fair to neither you nor I. But suffice to say the struggle has been great....
In those moments I spent asking for God's release, I felt moms hand tighten in mine, and for a few seconds I do believe she was thanking me for my silent words. On the way home though, I began to think about what I had done. Was I asking for her release for HER? Or was I asking because I was so tired?
By the next morning the "battle" with my thoughts had been won, but it was at the cost of my health. You see, somewhere during those hours of darkness, I realized I had become so stressed that those moments I spent with God and Mom, were in fact, my breaking point.
In other words, I have in fact, lost sight of myself. I have been so caught up in moms decline, the worry, the concern...the constant "on edge" feeling every time the phone rings, that I went into overload without even knowing it. And as a result, I have ended up sick.
Am I feeling better now? The answer is yes, I truly am. But I have learned a lesson from this and I am passing it on to you. My most cherished friends you MUST take time and care for yourself. PLEASE don't lose your way as I have just done. I got sick because I refused to let others carry the load for a while...and that was both foolish and wrong of me. Yes, I am indeed a caregiver. Yes, I am a daughter, but I am also a woman who tends to over extend and when I have depleted everything in me, I still search for more to give when there is in fact, nothing left....even for me.
To be honest, I have actually begun to look upon this illness as a "gift" from God. I know that may sound surprising, but I am starting to see it that way. Sometimes when we go beyond what is humanly possible, a gentle, guiding hand comes in and "yanks" us back in to realizing that one only has so much to give. He has made me slow down and given me the chance to re-group the only way He could.
So because of this gift, I have promised myself that now that I am feeling better, I am NOT going to jump back in head first. I'm not going to go visit mom for a while, and I am NOT going to feel guilty about it. I am not going to jump back in to website work, or answer the hundreds of e-mails I get each week. For a while yet, I am still going to take care of ME. Tay...the person. Tay the wife...
Next week I am going to indulge in relaxation. I'm going to read, and finish decorating the house for Christmas. I'm going to spend time walking, and taking long hot bubble baths surrounded by scented candles and quiet thoughts. I'm going to curl up in my husbands lap as we watch something funny on TV, and above all, I am going to finish "mending".
And then, I will return. Back to you, back to mom, back to all of the things that mean so much to me.
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