Prior to that happening my hubs David and I had to brace ourselves and I wrote this article prior to her transition.
EARLY IN 2004
David and I enter Riverview Personal Care facility the bright light from warm spring sunlight is instantly muted. The heels of my western boots make a clunking sound as they hit the tile and as my husband David and I walk swiftly towards my mother’s ward I attempt to prepare myself for what is ahead. We hadn’t been able to visit her for a few weeks because I had a respiratory infection and we couldn’t risk giving it to her. She had been diagnosed with Chronic Obstructive Pulmonary Disease (COPD) and was on oxygen to assist her breathing.
Upon reaching the triage we stop for a moment to discuss Mom’s condition with the staff and are told prepare ourselves. Her primary nurse quietly states that my mother is failing and will not improve much from this point on. As we draw closer to her room David offers to go in first and suggest I take a couple of minutes to ground myself before seeing her. I look into his amber eyes and feel blessed to have a partner who is sensitive to my needs. I agree and wait just beyond my mother’s room.
In an involuntary act my I feel my arms going around my body as I look around the ward at other patients in varying degrees of decline. The man Mom sits with during mealtime is slumped in his wheel chair vacantly staring at the television. Another patient rigidly reclines in her chair and barely moves as nurses and staff walk past her preparing meds and getting ready for lunch. A couple of others wheel themselves up and down the halls carrying on one-sided conversations with someone who only exists within their mental realms.
As I observe their conditions it is difficult to accept the reality that most of them were in this state when mom was admitted on the 2002 Thanksgiving Weekend. I remember how Mom had put on a brave front and said that it was a blessing to have been able to get into such a great facility. But now as I look around pangs of guilt creep in and I wonder if her admission here really was a blessing … or had it heightened her decline. Up until this point my mother was always one of the more cognizant ones and she took great pride in that. An unexpected wave of sadness wells up as I think that in a rather sudden turn of events my precious Mom is no longer able to participate in anything beyond the small confines of her room. She has totally withdrawn and the staff said she doesn't want residents to visit. It is hard for me to accept that these patients will probably continue living within their individual existences long after Mom is gone-- even though she was the more vibrant one until the past few weeks.
My thoughts are interrupted as David strides in my direction with a serious look on his face. He comes over, hugs me then says, “Sweetie it is not good—you need to center yourself before going in.” I snuggle into his strong arms and realize what a comfort it is to have David as my life-mate. After a few deep breaths I move towards my mother’s room. When I enter the senses are bombarded with the stale odor of stagnant energy. The scent of unhealthy body functions permeates the dull room and stops me in my tracks. I momentarily pause and David places a hand on my shoulder in a silent show of support.
There is a slight visual distortion as glaring light from the bathroom sharply contrasts the shadows in the rest of Mom’s room. There is enough light to reveal her multitude of collectibles and gifts from those who cherish her and memory banks are flooded with happier times when each one of those gifts gave her such joy. My breath catches as the sensory overload shocks me into the first realization that this is my mother’s final destination. Her prophetic words have come true … this personal care facility was her final stop before passing—and now it is happening. I clutch the bouquet of flowers we'd brought for her, take a deep breath and prepare myself.
David waits for my next move and finally I muster the confidence to round the slight corner and head towards Mom’s bed. Nothing could have prepared me for what I see. I am shocked by the amount of weight she has lost. Her frail little body is dwarfed within the large bed and I struggle with the recognition that the body with white shriveled skin pulled so tight over the skeletal face is that of the women who was always such a source of charismatic energy. Where is the person that I went shopping with only six weeks before?
Where is the Shirley Temple wig framing a Dresden Doll complexion and two radiant blue eyes? I hear myself silently thinking, Mom—mom where are you? Are you still in there? Please open your eyes and let me know you are still here—that we have time—time for me to let you know you’re not going through this alone—that I love you … and will be with you until the end.
As I stare into the shell that used to house my mother’s vibrant essence I am relieved to her stir and finally open her eyes. It is a relief to see the glimmer of recognition as she sees me. Neither one of us speak as Mom stretches a mottled, thin hand in my direction. I move closer, pull up a chair and take gently take her hand in mine. I look down, hold it gently and kiss it. Waves of grieve arise as I have to accept this hand no longer looks like the one I once knew. It is almost unbearable to see that the hands and arms that comforted me since I was a child are almost unrecognizable.
Her eyes stare into mine and within the silence of our shared knowing within our mother/daughter bond we are forced to acknowledge what neither one of us want to say out loud…so we do not. As it had so many times in the past we know that our symbiotic bond understands and accepts what is better left unsaid. My mother knows as I do that everything we once shared is ending—and she breaks through my waves of nostalgia and by looking deep into my eyes and saying, “I am so glad to see you—.” The there is a pause and I take a moment to kiss her gently on the forehead then say, “Me too—I miss you so much—and feel so sorry that I couldn't be here be here sooner. As the nurses told you I’ve had an upper respiratory infection—and they didn’t want me to come and risk giving it to you.” She squeezes my hand tighter as she says, “I know—they told me—I’m glad you’re taking care of yourself—even though I miss you too—so much.” She sighs a deep, shuddering hollow breath then changes the subject. “ I have been in so much pain—it has been absolute hell—sometimes it is so bad—I don’t think I can take it—and I think it would be better if I could die—but I don’t really want that—like I told David during his last visit I want to live—for a long time.”
There is another pause—and I steel myself against the reality that the chances of that happening are very slim. I hear a sigh from my own body as I study her face and as she continues I see how soul weary she looks. “They give me pain medication—but it doesn’t seem to help that much—then weird things happen sometimes. I keep seeing people—and some of them are plotting to kill me—I told you about that-- didn’t I?” David sits quietly in mom’s big chair by the window. I glance over to him so mom won’t see my dismay this latest admission. We both were told that the morphine was taking was making mom’s existing vascular dementia worse. They had previously informed us that she was experiencing paranoia and hallucinating to not to take anything she said personally. That knowledge didn't make it any easier to see her this way.
A few days before in rare phone conversation Mom had envisioned a conversation with me that had never taken place. In her mind I had told her she was a crazy old lady and I had stolen all her money. It is all part of her process-and one that has to be accepted because it was unlikely to change. In minutes that seem longer than they are I turn back to mom and notice she has momentarily closed her eyes and possibly drifted away. But as I touch her face, then speak she opens her eyes and stares into mine. In a comforting voice that I hope is convincing I say, “Yes mom—I do recall you mentioning that. Do you feel frightened by the people who are here?”
Her response brings a slight smile to our faces as she says with a slight grin, “No--lately the people who have been here seem to be trying to entertain me—so it is feels better to have them here than the others.” Then in an unexpected turn of events she suddenly begins to encourage David and me to leave even though she said how much she missed us and we’d only been there about seven minutes. “I know you have a long ride home—you should probably be going now.” David and I exchange a quick look of acknowledgment and it is yet another jarring epiphany about how much everything has been unalterably changed.
My mother lived for our visits and now she is too weak to participate in sharing anything and my heart is shredded with regret. How has all this happening and how do I process it? Here my mother lies—in a rapid decline—in pain—suffering—confused—and it is happening moment by moment and I live too far away to be here every day. My mind begins rapid fire questions and possible stop-gap measures. Maybe I could take her out of here—take her home with us—let her die with us close by—then she wouldn’t feel so confused and alone. Then regret begins to set in. Maybe if we hadn’t put her in personal care none of this would be happening—maybe another doctor could have stopped it. How do stones develop and get stuck in the kidney and bile duct anyway? I just read an article that high pain levels during advancing years can exacerbate dementia—maybe it is our fault for not supporting her more. As my mind continues an inner tirade I feel mom’s grip on my hand weaken and she is drifting into the comfort of sleep—which is what the nurses say her pattern has become. Sleep, get up to eat a little, request her pain medication. They said she is withdrawing and that disengaging from loved ones and family members is a natural part of the death process.
As I sit quietly holding my mother’s gaunt little hand I have no choice but to accept what cannot be changed. I am acutely aware of much my mom did her best to live by the prayer of serenity—but coming to terms with how little control I have over what she is going through in a serene way is not an easy thing to do. David and I sit quietly for a few more moments and as I stare at the skeleton that used to be my mother I look around her room and struggle to come to terms with the reality that in the not too distant future this room will be stripped of all her possessions and will go back to the sterile place it was before we filled it with the remaining representations of who she is and what she liked. Within immeasurable melancholy I know my Mom needs to separate and I must honor that and decide it is time to go.
David comes over, places a strong arm over my shoulder and we turn to leave and I have only one thought as my heels thud along the sterile hallways on the way out—my mother is dying and we must go on and allow it to happen. I silently whisper a prayer from my lips to God’s ears. Please help me through this now ... and in the days and weeks until her time comes. And if it by Thy will—please wraps her up in angel wings and release her from all earthly concerns in gentle a loving way. She was an earth angel and deserves the best and easiest transition from our world to yours. As the automatic doors swing open I try to comfort myself with an image of my mother’s sweet, gentle spirit flying free with her beloved butterflies fluttering around her.
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