Definition of bittersweet

adjective

• (of food, drink, or flavor) sweet with a bitter aftertaste.
• arousing pleasure tinged with sadness or pain:the room, with all its bittersweet memories
   
   
  I've had a couple of respite trips - one to Philadelphia where I went to be in the company of some of my wonderful women friends. These are the friends who make the effort to connect with me and remind me that I still have a life.
   
  Then I had another trip where I flew down to Nashville, where my brother lives, and we drove down to Alabama to spend a couple of days with our mom. We shared memories of our childhood...and I treasured the simple reminder that all the details of my life are not completely gone.
   
  The thing about respite is that it is so wonderful and also so very painful. I spend time laughing, being with people I love, strengthening connections, and escaping from the pain of caregiving. I come home refreshed but also aching because freedom comes so rarely now, and is all the sweeter because I know what it is like to feel the restraint of Donna's Alzheimer's. It has shrunk both of our worlds. I used to feel like my life now exists on an island, but respite makes me feel like the world is still out there, and then I must return to this postage stamp of life where it is only work and caregiving that occurs.
   
  I also shared bittersweet memories with my friend, Sharon who was in Massachusetts for a few days. I was able to pick her up and take her on a trip down memory lane!
   
  
    We went to eat at Weintraub's Deli in Worcester, where she had not been in at least 40 years. It made her incredibly happy, and painfully sad because Weintraub's is a repository of memories for her. Family that she loved are no longer alive except in her memory. The taste of a pickle or the bite of corned beef transported her back to the sweetness of her childhood.
  
  Driving around Elm Park to see her grandfather's old house, now altered by new owners takes her back in time, yet she must dig deeper into her memory to recollect the house when it was covered in clapboards and filled with dark wood, stained glass, antiques and the love of her family. Now it is a geographical placeholder, around the corner from other homes where relatives live - but all of them now gone.
  
  
  The poignancy of sharing this short evening with Sharon reminded me that we often grow up and find these memories rattling around in our heads and we wish so desperately that we could ask questions of the people we remember. We grow into our lives too late to have the chance to get the answers to questions we would like to know.
  
  
  For me, there is such heartache in memories because Donna is losing all connections to her own life as well as mine and our collective life. Sharon drives by her grandfather's old home and is instantly thrust into memories that she can share with her sisters and her husband. I drive by a place where Donna and I lived, and it is no different for her than any other house on that street. It means nothing. I remember the porch, the view of the pond, the muskrat and ducks, that it was where we lived when our old dog died, and our new dog came to live with us. I remember the ugliness of a pink bathtub and the noises of the pipes, and that the extension was built on cement-filled beer kegs. Donna remembers none of these things. She doesn't remember her own memories either. There is no context for her life with or without me, with or without her memories...she only exists in the here and now. 
  
  
  While ultimately we all only have the here and the now - we live in our present replete with all the history we carry. We bring our memories and experiences with us. We carry those we love and who have loved us. We hold the stories that old relatives told us and so they live on. We tell our own stories thereby connecting our past and present and hope that the people who love us will someday tell a story that begins with, "Remember when...."
  
  Donna doesn't have that. Doesn't say that. Doesn't do that. To say it is a devastating loss is a bit like saying have a limb ripped from your body hurts a wee bit. You think you can imagine it. But you can't. And that is why it is good that there is some sweetness to temper the bitter.
  
  
  
  

Answering My Own Prayers?

"Prayer is attention unfolding into intention. It is purpose, resolution, dedication. Which brings us face to face with the greatest of all spiritual discoveries - that if our prayers are to be answered we must answer them ourselves; that we are already answering our prayers in the mere expression of the desire that they be fulfilled."

John Haynes Holmes

This gem arrived via my friend, Ellen on Facebook, as food for thought on this Fat Tuesday. It will likely be a good companion over the course of Lent as I continue to struggle with where God is in all of this mayhem created by Alzheimer's. I was raised Catholic and in many ways it stays with me. However, what I find myself staggered by in this quote is the notion that I am indeed answering my own prayers by the act of merely expressing them.

My prayers range from moments of gratitude to desperate pleas for patience. In no way do I see Donna's Alzheimer's as a blessing or a curse. It was not given to her or to me to teach us a lesson. It is impossible to believe in a higher power at times, but it's always possible to believe in science. Whatever neurological switch that got flipped is a genetic anomaly. No one gets Alzheimer's from not working enough crossword puzzles, or from smoking, or from exposure to toxins. It simply is. I think the total randomness of Alzheimer's coming into our lives is no different than having a moose wander onto the highway at exactly the wrong moment when a car is driving by.

Living with and loving someone for almost 25 years has taken a tremendous amount of purpose, resolution, and dedication. Being a caregiver requires more of me than at times I feel capable of giving or bearing. Now I find myself strangely comforted that as I shriek inside my own head that I cannot bear this loss...that is a prayer of sorts. And when things are quiet and calm and Donna and I are sitting on the couch with Ripley, and I am in the moment and completely connected to her...that is a prayer of sorts. 

Donna used to talk about Heaven. She would tell me that when she got there that she would say, "Nope, I can't go in...I need to wait for you and Ripley. That other dog (Duley) will stay with me."  I'm glad she envisions an afterlife with those she loves.

So, while I'm still not sure where God has gone, what I do know is that I have not completely given up on the notion that God exists. For now I'll just keep working on answering my own prayers through the expression of the desire that they be fulfilled. 

  Oh, and by the way - we survived the blizzard!

Getting Away

“Each person deserves a day away in which no problems are confronted, no solutions searched for.”
Maya Angelou
 
I'm heading to Florida this week to present at a conference. It has been quite a long time since I've done this. I miss traveling and meeting with colleagues. Traveling with Donna has changed exponentially over the past few years, and it is something we no longer do. We may go visit friends, but we no longer go to new places, no longer jaunt off on a weekend somewhere, no road trips, no planes. We won't ever make the drive to Alabama again to see my mom because the experience is so disorienting for Donna. So going to Florida feels as exciting as if I was headed to China!

I shall be wearing new jewelry too - on this trip, and every day - a Medical Alert bracelet. Mine says: Caregiver for ####. Donna's says: Memory Impaired... My name is Donna.

 As a solo caregiver this means that if something happens to me then first responders will know that I am a caregiver and they can call or log into the information associated with the ID numbers on the bracelet. This is peace of mind for me that assures me that someone will spring into action for Donna if need be. Her bracelet reassures me that if she wanders then this is as close as a microchip as I can get to making sure she is 'returned to sender.'

I thought she might hate the idea of the bracelet, but she said, "Thank you, honey, thank you, thank you." I honestly believe that on some level she understands why we have these bracelets. She surprises me by her capacity to comprehend the subtle things, and her inability to make sense of the simple things. She still has times when she knows how hard things are for her. Recently I asked her, "Do you know what Alzheimer's is?" and she replied, "It is me." One thing is certain - Donna hasn't forgotten how to have fun! She experiences joy nearly every day. All the complexities and demands of life that bog us down as adults have disappeared for Donna. Yes, she is lonely. Yes, she is sad. Yes, she understands the loss of people who have disappointed us both by their disappearance. However, Donna is 'lucky' to not be plagued by the recurrence of those feelings. She simply moves on without any effort required.

I haven't had a trip alone in a few years, and when I have had a day or two of respite I have spent them at home alone. Last week someone told me that I had forgotten how to have fun. I've been thinking about that a lot, and recognize the significance of that statement. So, while Florida is not just a trip for leisure, it will hopefully remind me that I can have fun again, and that respite shouldn't always be a reclusive experience.

Donna will be staying with family because she can't stay home alone. Again, while I expected she might balk a bit at the need to stay somewhere else, she again said, "Thank you, honey. Thank you. Thank you." I can't impose on them too often, but they are the only option I have for respite now. In time, the caregiver may be able to stay here for a few days, but she is not familiar enough to do that yet. So, wish me well. No matter the weather I'll be glad to be somewhere other than home. I'll even try to have fun!

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.
Lao Tzu

Anyone who knows Donna and I, not singularly, but as the us that we are would know that this quote embodies all that is the most simple and most complex truth of who we are.


Yesterday we went out to grab a bite to eat. I said it was in celebration of the news that the roof repairs would be far more affordable than I had feared. It was that, but also I was just too tired to cook. Donna loves wine, but I don't buy it very much because she simply cannot remember how much she has had to drink. I got tired of coming home to her being sauced, not to mention that I think it was making her more depressed than happy. But when we go out she savors that glass of wine as if she has crossed the desert and come upon an oasis. 

After we came home we were sitting and listening to some music and I asked Donna if she knew what Alzheimer's is. She said, very matter-of-factly, "It is me." I was taken aback at her response and even more by what she said afterwards - which you must keep in mind comes in a circuitous pathway of words - but the essence was this:

"Every day I am glad to have another day, and I don't want to be sad."

I am frequently the recipient of messages that praise or admire my strength and my courage, but it is often only me who shares those sentiments with Donna. I tell her how much I appreciate that she fights to keep going, and that she tries to be happy. It is excruciating to watch her slip away, but she does not give in to the overwhelming sadness that the Alzheimer's diagnosis could bring. She never has. If you know anything about Donna's life history you might not be surprised by her resilience and yet shake your head at how she responds to the fate that awaits. Shortly after the shock of the diagnosis work off, Donna quipped, "You know, I had a hard life but I hope I forget all those times and remember the best years."

She, and Lao Tzu, are pretty smart!

What I Must Forget

“Not the power to remember, but its very opposite, the power to forget, is a necessary condition for our existence.” 
Sholem Asch


It is sometimes maddening to live with someone who forgets almost everything. We can spend an entire day together out of the house, running errands, having lunch, laughing, enjoying the moments and when we pull into the driveway Donna will turn to me as she fumbles to find her house keys and say, "Where do you live?" The sting is immediate and harsh as if she'd slapped my face. I try hard not to let her see my reaction because she always looked so puzzled, as if to say, "What did I say that caused you to look so hurt?" 


I have long since learned to live with the endlessly repetitive questions such as "Where are we going?" or "What day is it?" or "Did you have a good day?" If I couldn't live with these repetitions they would slowly but surely erode away my natural optimism. I made a choice early on that I was not going to live through these years in a state of aggravation over things she cannot control. Keep in mind I am not perfect. I lose my patience. Luckily she forgets quite quickly, but it takes me longer.


Forgetting is still a skill that I must practice. I practice forgetting the days that she doesn't know who I am. I practice forgetting how annoyed I can become by her complaints that she never gets out of the house. I practice forgetting the endless list of worries that can clog my mind like a backed up sink.


Every day I work to forget the things that could rapidly overshadow the memories I want to keep.

New Year's Eve

Should auld acquaintance be forgot,
and never brought to mind ?
Should auld acquaintance be forgot,
and auld lang syne ?
 Robert Burns

For 24 or 25 years I've spent New Year's Eve with Donna. I'm not too sure of how to mark the passing of time, and honestly it's not pertinent. We've never gone out for New Year's Eve. We've never made a big deal of it. We've never bought a bottle of champagne, made a festive meal, or sang Auld Lang Syne. And honestly I can't think of anything worse than going out in the cold for something like First Night. I sound so curmudgeonly., but mostly I just don't care about ringing out the old or ringing in the new.

Donna and Ripley have gone to bed. Neither of them are aware of the turning of the calendar to 2013. Donna doesn't seem to understand time in the same way anymore. She has a difficult time saying numbers, she often doesn't know how old she is, but she knows her birthday. She doesn't understand time in the same way anymore either...after all what's the point of knowing that something is happening in 15 minutes, 15 hours or 15 days when you can't remember what the something is anyway?

One thing that Alzheimer's has taught me is that the present is where life happens. Alzheimer's gets the reputation that someone slowly forgets their life's details, but you quickly learn it is not so simple. They forget your life's details too. As long as I meet Donna in the moment it's not so apparent that she's forgetting me more and more every day. The fact that she remembered my name a few days before Christmas was nice. Now I have a chance to say, "The last time she said my name was on that date." Or maybe next week she'll say it again, and I'll replace the date. I try not to go through days wondering if it's the last time she'll say or do something. What's the point of marking all the milestones in reverse? I'd rather they sneak up on me like when I realized she didn't know my name because she never said my name any more. It wasn't the disconnect that occurred when we went to Maine last summer when she completely forgot who I was - that was devastating - but there was something so utterly heartbreaking when I realized she didn't know my name. And still she mostly doesn't know my name so she calls me Rippy or honey. Who I am is more important than my name. Or so I tell myself.

It's not going to get any better and it's going to be a hard year this 'two oh one three'.

So, for all my friends and loved ones who still know me, and know my name, "we'll take a cup of kindness yet for auld lang syne." 





 

Love is what you do.

"Love isn't how you feel. It's what you do." 
Madeleine L'Engle 

If Madeleine L'Engle is right then I must be feeling a whole lotta love! There is snow headed our way so that meant an early trip to the grocery store to make sure we had the prerequisite milk and bread. 
 

For Donna there must be Greek yogurt, and sugar, and half & half because she lives on those. One of the most interesting things about the Alzheimer's brain is its increased  need for sugar. This isn't true for just Donna, and there's some interesting science behind her desperate need for Klondike bars - The Alzheimer's Project

One of the most difficult things about the progression of Donna's Alzheimer's is that I have to take on more and more. When Donna quit working she was still driving to familiar places. She could still use her GPS and cell phone. She still paid the bills. All of those things are long gone. It's been 3 years since she was officially diagnosed, and 5 years since she insisted to our nurse practitioner that there was something wrong. While so much has changed, so much remains the same.

With or without Alzheimer's there's always so much to do: laundry, pellets for the pellet stove to bring in and trash to take out, cooking and cleaning, and a million other things. While I'm busy doing all these things, Donna manages to do things as well. She is still making very simple quilts, she loves to color bright drawings with markers in all hues, and watching the birds at the feeder. I suppose those prove that she still loves life.

When people say, "I don't know how you do it" I say - what other choice is there - because we both love our lives - so we don't just feel that love; we do the things that show the evidence of that love. I'll try to remind myself of all of this later, because when I have to shovel 8 inches of snow I won't be humming a love song. I guarantee it!