Monday, February 25, 2013

Love and Hope - a Journey Through Alzheimers

Do you ever wake up and not know where you are?  If you've traveled a lot on business, you know the feeling. But to wake and not know who you are, that would be a terrible thing to behold.

My step mom  married my Dad two years after my Mom died.  He grieved for my Mom terribly, but he was still a relatively young man, and lonely. She was a widow with three grown kids. They were set up on a blind date by a female friend of my Dad's.

She was always a bundle of energy, 5 feet nothing and 95 pounds of whirlwind motion, laughter and care.  An expert seamstress, she joined a group of ladies from the church who hand crafted stuffed teddy bears to give to kids being brought into the trauma unit at the hospital.  I've written of them before, the ladies making the bears from scratch with clothing and accessories, all unique, cowboy bears, farmer bears, made with love, and all at their own expense. 

I remember one story of a trip the ladies made to the hospital with the newest batch of bears. While they were there, a very elderly man was brought in, muttering in pain and confusion, hurting and alone.  His eyes lit up at the bears and he asked to hold one. She gave him one and he hugged it to him, like a little child would, talking to it, breathing deep of the comfort of soft fur. The ladies let him keep it, a small bit of peace for someone lost and alone.

She had her little moments of forgetfulness, like any aging person, but a previously diagnosed cancer was in remission and she was doing really well, still active in church and in volunteering, taking dance classes, working in the garden.  But one morning, a few months later, she came into the kitchen and sat down, looked at me and I realized she did not have a clue as to who I was.

What struck me, was not that, but the look on her face as she realized this, realized she should know. I obviously wasn't a bugler or a neighbor over for coffee, I was a girl with red hair like everyone else in the family, wearing a fuzzy robe that she herself had washed and put in the guest closet the night before.  I will never forget the look of her at that moment. It was the most starkly exposed face I'd ever seen, a face in which which unknown terrors haunted the edges; the face of a fledgling dove about to tumble from the nest.

It came into our lives quickly, one moment she was laughing, engaging in board games and puns with us, her face bright, her wit razor sharp. Then came those moments where everything just went sort of dim. The doctor only confirmed what Dad had suspected and kept from us for some months until he knew for sure.  Alzheimer's.

It's a terrible disease for all involved. We read what we could about it, we planned as a family  and we prayed.  There really wasn't more we could do.

As the next year and a half passed, there were a  few moments she was quite lucid, and happy. But those were the hardest for all of us, for in those bief moments she was fully aware that her mind was going, what was happening to her and how helpless she was to do anything about it.

The disease's progression is as predictable as its course is certain.  Mood swings and aggression, words that made no sense, dropping to the floor like marbles, tears as she tried to mentally gather them up, anger at the very air around her. She always was gentle with my Dad though. Only with him would she remain calm, the reasoning that was blind and deaf somehow responding to something in him that her mind could still see.  Dad cared for her at home, no matter how bad it got.   We arranged for a home health aide to come in and lend a hand a few hours a week but he refused to let anyone else care for "his girl" or to send her to skilled nursing care. When she passed, it was quite sudden, after she contracted pneumonia. From her sudden coughing to her collapse, was just days.

Sometimes when you get to the far edge, the edge just breaks away.

We laid her to rest  on tree covered hill top. We visit, we bring flowers, we hug and shed some tears, neither of us immune to having our heart broken.  Then we smile through the tears, sharing their stories as we make the long trip home to photos and a little stuffed bear wearing the colors of the flag.

Would she have lived her life differently had she known her fate ahead of time? Perhaps not. Perhaps, in essence, she did, her mother dying of the same disease, as she and my Dad courted. 

She lived life to the hilt, a wheel in motion, racing downhill, a light against the darkness, the whir of a needle into soft fabric. I have a picture of she and my Dad on their first date, and you could see something in their smiles that would be lost on so many people.  Love is a story that tells itself.

I woke up the other morning abruptly, the glaring ringtone of the bat phone waking me with a message just after I'd fallen asleep.  For a moment, I did not know where I was at. The small room was cold, the sound of Barkley checking on me muffled from carpet, not hardwood floors.  I was in my place near work, traveling in the previous day to go on call.  My heart was pounding as that particular ring will do that to me, the surge of adrenalin. There would be no going back to sleep.

But I was aware, of every tick of the clock, of the feel of my skin, the soft panting of doggie breath waiting to see if I was going to get up and leave  or go back to sleep..  I was so blissfully aware, of these moments, these sounds. It was a new day, and even if tired and cranky, I'd leap right in, like a deer into the brush, feeling no thorns.

So I go, and so I watch, finding sense in the senseless, finding my purpose even as sparrows fall to earth. People watching from a distance would think me too quiet, too still, shouldn't this activity be a frenzy of lights and motion, like on TV?  But there is great activity in being the quiet observer, standing in a stillness that smells of silence,  breathing in so many scents in damp cold  air. Sweat, blood and a flower that only blooms in the dark, the wind so scant it's like breath on a mirror. Each smell blended yet distinct, always overlayed with the copper tang of life spilled. The air hums along to the nights quiet as all I see, smell and feel, forms into a substance I can almost feel on my flesh, capturing it, recording it there in the stillness. The truth is often still, inarticulate, not knowing it is the truth.

When I next get out to my Dad's, I'll once again see that photo of them on that first date, the feelings there so sudden and so very unexpected, incapable of being formed into sound. I'll look at another photo, the last one we have of her where she was completely with us, a laughing woman on my deck in the Indiana summer, her movements that of a bird, free and spirited. There is no fear in her, in that memory, even as the picture lays silent. But there is hope.

Those last days with her were difficult, but they taught me a lot.  Not just visible confirmation of what my Dad was truly made of, but that words aren't  necessary to define what you believe, that nestled in the strong crook of an arm of the one who understands you without words, you know exactly who you are.  Even when she didin't know who I was, she taught me about not being limited by fear, but going forward with hope, even if the future is not articulated.

Home and love, love and desire, can be what propels us silently onward.  Hope and love,  love and desire, can also be merely sounds, that people who have never hoped or loved or desired have for what they never possessed, and will not until such time as they forget the words. 

 - Love, Brigid


  1. Brigid, I understand....

    I lost my Dad to dementia years before he died. For him it was not Alzheimers, but rather a lesser known dementia, Lewy Body dementia. All the problems of Alzheimers, PLUS hallucinations! Yeah....

    My mom cared for him at home until his final 4 days on earth. I still don't quite understand how she coped with him, as bad as he got. I know she is a strong woman, but I had no idea.

    He never seemed to me, aware of his own mental decline. I guess that was a blessing. The memories that sting the most, are those brief flashes in a phone call where he would be himself again, for maybe 30 seconds. I would have a brief hope that he was coming back, that he'd somehow be ok, and then that would vanish into the ether...


  2. BEAUTIFUL! And a reach back in time that is obviously special to you and your Dad. Alzheimers is an insidious killer and many times it kills the family with it. You handled it the only way you could, and did the best you could.

  3. I am reminded once again of the agony of the victim as they slip into that long goodbye, knowingly and helpless ... and the strength & fortitude of those who must stand by, and endure that slow passage.

  4. Such a terrible disease. Amazing how even under the ravages, she was able to shine through in some way.

  5. Folks with Alzheimer's in the early stages do definitely know that something is wrong, they just can't figure out what it is.

    We lost my mom young to cancer; I wonder sometimes what would have hurt worst, losing her early or having a few extra years with her with the possibility of her having to go through dementia.

    My dad is in his mid-70s. He is doing well, but we wonder, will it hit him? I work with Alzheimer's patients every day and the thought of a family member having that disease scares the crap out of me.

  6. Brigid,
    My mother died, in part, due to "vascular dementia" in 2007. As a nurse, I had thought that the course would be more similar to Alzheimer's and it was not. It has taken five years to realize that my mother did not hate my brother and I, but her disease process certainly did. It took work to remember her as the person prior to this illness. Thank you for posting so beautifully on this topic.

  7. My grandparents seemed to be of one, had they been of one body... well.

    Grandpa was sharp as a tack. Always was even when lost the ability to stand up or even speak. On the far side of 80 his body finally gave out on him. However with Grandma, healthy as a horse but in a constant battle of present vs past with her Alzhimers. Some days I was Bp, some I was my father. I remember one EMS run at the home to pick up another PT, grandma was in the hall and I stopped to hug her like I did when I had EMS runs in the home, she hugged me tight and called me by her brother's name, then introduced me (her brother) to her grandson the medic (my partner, playing the (part of me). Sad and funny at the time.

    She was outside watching the counter-rotating wind driven pinwheels one day. She held my hand and said, "I feel like my brain is like that, going in one direction, but is the other direction the right way?"

    I miss 'em both.

  8. My grandmother died of Alzheimers. I had gone back home to start college, and my parents took in my grandmother when she was no longer able to take care of herself. I know the look you are talking about. Both when she didn't remember when she knew she should, and when she remembered not remembering. One of the saddest things I've ever seen.

  9. My grandmother was hell on heels, even as a preacher's wife. She kept things fun, was the social butterfly, supported my grandfather and held the family and the church together. Until, she too, succumbed to Alzheimers. The last few years she didn't know who I was... she knew her other grandchildren on sight, but not me. She knew my daughter, knew she was my daughter, but still couldn't quite comprehend me, I was a stranger. I was forever engrained in her memory as a 10 year old little girl, with long blonde hair. The forgetfulness, the episodes (like making Christmas dinner for 20 people at 3 am in March) were exceptionally hard, all the way to the end. It's hard to forget all of that, but I do my best to remember the 4'11" curly-haired spitfire or who would move heaven and hell for her family...

    I'm glad you have such beautiful memories of her from before the disease. I think this says it all.. "Home and love, love and desire, can be what propels us silently onward." I'm sure this was a hard post to write, but I'm glad you shared it.

  10. You capture the moments and feelings so beautifully. My dad also had dementia. We, too, had in home nursing care when we could no longer handle it ourselves. He always remained loving and thanked us for everything we did for him even when he wasn't sure who everyone around him was. I was the last person he remembered. It was very difficult for my brother when my Dad no longer remembered who he was.

    Thank you for your beautiful post.


  11. I don't have any close relatives whose had it but a very close friend walked me through it every single day as her papa passed on. Awful!

  12. Im not sure which i hate more Cancer
    or Alzhimers lost my younger brother to Cancer in 2010 and Father to Alzhimers/Dementia in 2006 it just
    hurts so much and seems so unfair.

  13. There is a special part of Heaven, I believe, for those who have suffered with dementia; alongside is a place for those who, like your Dad,lived with the victims. Thank you, Brigid; my Mom is following her Mom's path ever so slowly.

  14. My friend, I count myself fortunate that my parents are still alive and reasonably well. Much respect, based on what I have read, to you and your family.

  15. Your words are healing words and I thank you for writing them and allowing me to read them. Bless you.


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