Sunday, September 18


Even as I posted this post, I knew the fleeting feelings of peace were leaving me....perhaps that's why I wanted to preserve them before they flew away. 

This is such a lonely journey, one that I try to be brave about and one I try everyday to prepare for...shoring myself up with nourishing food, books and blogs by people who know this journey, deep breaths of fresh air, appreciating the beauty and goodness around me, cherishing the love that comes my way.

I've always been an optimistic person, usually able to make the best of whatever situation is mine at the moment, while still being honest about it. But lately I begin to think it might be more helpful to people understanding me and understanding the life of a dementia caregiver if I appeared less successful at coping. Perhaps if I stopped wearing pretty clothes and washing my hair. Perhaps I could start giving in more to the comfort food and the lure of a glass of wine. Perhaps if I stopped being honest but strong when I have the rare pleasure of meeting friends and acquaintances and instead could be honest and emotional....but no, you can really only feel safe enough to be that way with true friends or other caregivers. Only they can understand. Or at least want to understand.

What I am trying to say is that it would seem, from what I have encountered over the past few years, that, in general, people have to be hit over the head with the reality of Alzheimers. Hints, stories, reality presented with lovely pictures or hopefulness just don't seem to get across what I am sometimes trying to get across. Although if I stop to really think about it, it does get it across to those who live caregiving, to those who have extraordinary empathy, to those whose other-sorts-of-sadnesses-and-experiences have given them the ability to read between the lines or read what I sometimes don't express as well as I would those who leave comments here. But it has been so surprising and shocking to me how few of my dearest friends and family don't get it. That is what has me writing today. Writing for myself and for all those others who find themselves in the same boat. And a lonely, rocky, and rather leaky boat it is.

If you want to try to understand a bit better, would you go and read this and then come back here?

A blog is a funny thing. Much of the time, I might be preaching to the choir....the friends and family that I most wish were reading it, don't, or atleast I don't know that they are. And it's not for lack of trying to get them to do so. Perhaps I put too positive a spin on my caregiving...tho' I find if I put all of the emotion I feel out there, I too often receive advice or accolades, when I what am looking for is understanding and support-both things that are so much harder to give online (and yet online is where I receive it most), but are what I most lack in my day-to-day life. Without your comments and other online support I would be in a very bad place!

So if you are reading this and only know me through my blog (and might be feeling rather helpless at this moment), please know that this post is a result of months and years of friendships limping and dying and me just needing to put my grief somewhere else beyond my own body and spirit and my husband's shoulder.  I will go on trying to take good care of myself, to find more respite, to make new friends....but I hope all who read this will think about who you might know in "real life" who might need more of your loving attention, and that those who are caregivers might think about how you might be more honest in your reaching out.

For me, that will mean posting more here....just needing a place beyond my family here at home to describe what it feels like....when your realize tho' your mother still calls you "daughter" she doesn't know she is your mother hear her say "don't leave me" when you are just laying her clothes out in the morning and then going to the kitchen to get breakfast or kissing her at naptime and have to dredge up over and over again the best responses to her odd sightings and sayings, not the ordinary responses that come easily but the soothing, accepting responses that I am now learning to say. All this comes at a cost, one I am willing to pay and one I know I will pay less dearly for as gather skills and support around me. But I feel as tho' I am only at the beginning of this journey and am at the bend in the road where I have accepted that some people that I thought would accompany me just aren't there. So be it. I will find others, and perhaps some of my old friends and family will join up with me further along.

What I am hoping for is that we can all just bring some more understanding into this world. I have always loved the St. Francis prayer that includes the line "let us seek not to be understood, but to understand"....tho' I've never been terribly good at it. I want to be better at understanding others and their lives, but I also want people to understand me. But then, I am not a saint, just a human. So I shall try to be more open here, in the name of illumination. And even tho' I didn't include a beautiful photo this time, I will in the future, as usual, because life is all about the beautiful and the awful....the darkness and the light...the easy and the difficult. Alzheimer's is the most difficult thing I have ever faced, and all that comes with it seems to scare off a good many people, but I am going to keep trying to talk about it...for me, for my mother, for everyone. For understanding.

"Our life is a faint tracing on the surface of mystery, like the idle, curved tunnels of leaf miners on the surface of a leaf. We must somehow take a wider view, look at the whole landscape, really see it, and describe what's going on here. Then we can at least wail the right question into the swaddling band of darkness, or, if it comes to that, choir the proper praise."
- Annie Dillard


Anonymous said...

Well said, dear friend, well said. {hug}

J. Chapman said...

You are correct in saying that folks have to be hit over the head with it to "get" it. What a strange disease. And even though I would never wish it on anyone, I don't regret the time that I spent learning about it and acting as caregiver for my father, trying to make him calm and comfortable. It was the hardest thing I have ever done and it definitely took a toll on me - as you say - especially emotionally, but physically too. support for you and extra helping hands for your mom is so important. You have to have a break. then you can come back and give her your smiles and your love full throttle. So much of the disease (in later stages) draws them back to childhood and wanting to be safe and not alone. whew. please, please keep writing - especially if it is a release for you. Your writing is beautiful on it's own. Love to you, Julie

Melissa Wiley said...

Oh, dear Lesley, how I wish I still lived in your corner of the world!

I keep writing and deleting things...words seem so inadequate. A cup of tea would be better, a listening ear. Well, that last I can offer.

When my oldest was a baby, there was a wonderful elderly couple on the next street. Mrs. F was blind, and sharp as a tack. Mr. F was mostly deaf and had Alzheimer's. Mrs. F had quite a difficult row to hoe, for sure. Their two children lived an hour away each, and my role--I found them through a volunteer agency--was to thread needles, run errands, change tiny hearing aid batteries. But mostly we visited, my baby and I. Jane would watch Price is Right with Mr. F, and Mrs. F would tell me stories about her days as a Manhattan secretary in the 30s. I don't know why I'm writing all this except to say that the very little bit I know about caring for someone with dementia comes from Mrs. F, her frustration and fortitude. I wish I could be there to thread your needles, so to speak. Though I know it was a very little thing to do! (I think Jane and Price is Right did much more.) :)


melissa said...

So well-said. You've put it all so beautifully. May you feel loved and blessed 'right where you are'...hope that folks will gather around to help YOU and not just your mom.

I've been the caregiver of a caregiver and have marveled at their strength, but their fragile-ness as well.

Take care, sweet one.

kkkkaty said...

People disappear when one family member dies of unusual circumstance as well sometimes..and when there is a mental illness, as my son's friends, teammates and their parents did when my son was diagnosed with schozophrenia at the age of 15, an insidious disease as well. All doors slammed in his face. I could not do now what I did then to protect him and others and fight the stigma too. People with MS, deafness, cerebral palsy, while debilitating, their brains function normally. Adapting is easier done than with a loved one who forces you to paddle upstream, resists rationality and does not think the way we do. All doors were slammed in my son's face at a young age..he is 45 now, and still lives in a group home, speaks his own language and the quality of his life is out of my control. To me, nothing is more debilitating than having your spirit of living taken away. So when their wires are crossed, it tests our own sanity and exhausts and drains us. Your writing will be your salvation, Lesley, and as time goes by, the lonliness will change, if now you cannot see a light at the end of the tunnel now. Fondly, Kathy

Anonymous said...

Wow, Lesley, I commend you for writing this. I do hope the writing functioned as therapy in some way. I definitely have benefited from writing my own blog, and just putting it out there how much this whole thing sucks. It also has allowed me to reflect and I feel so much closer to Mom than I ever would have thought. So I feel fortunate to be experiencing that. It is true, too few people really understand this disease. I think people imagine an Alz patient just sitting quietly, doing nothing, or maybe asking the same question repeatedly. And yet those of us living with it know it is SO much more, and therefore SO taxing. And sad. And frustrating. I have been relatively lucky as far as support goes, though I definitely often feel very alone. I'm so sorry you have been feeling some sense of abandonment (I think that's what you are conveying?). That is exactly what NONE of us needs, ever. Take care, Emily

Anonymous said...

Writing can sometimes be very therapeutic- even if you are unsure who will read it- if anyone. It seems to be a way to put your story out there, to let your grief or pain have a voice. You are not alone.

I encountered a brain exercise that has been found to prevent alzheimer's and it also shows potential in reversing some effects of the disease. This man (Dr. Dharma Singh Khalsa) has written many books that have changed my life. It is worth looking into for yourself and your loved ones.

Best of luck.