An Excerpt From My New Book!

"As caregivers, we are daily bombarded with these proclamations of coping and faith and the best way to get through the dark times.  These illnesses can seem so arbitrary, so senseless and random in who they strike, and more punitive than anything else, that people seem to need to find meaning, a purpose, behind dementia - but how can we? 

These people seem to feel they have an opinion on what meanings we should create from the burden of caregiving; on whether there is a message we should take away from our experiences, and what it might be; about exactly how we should endure and carry on; and that we should believe this hardship to be a great gift.  We are told that we are doing 'the right thing', when we step up to take care of a family member, but who defines what is right?

The people around us project their own fears, resentments, and other belief systems on caregivers and potential caregivers.  Frequently, I had friends of my family, as well as perfect strangers, inform me what a good thing I was doing - what a good daughter I was to my father.  A friend who has recently moved her mother in with her has had people react with foreboding and disbelief about how she will cope with the extra burden; that she will be overwhelmed by her mother's needs or by past emotional family dynamics.  And they praise her for being a good daughter.  These people are reacting out of their own fears of being in a similar situation, and are projection how they would feel about it onto my friend.  It

It is human nature to project fears, expectations, and past experiences on others, but caregivers seem to be the recipients more than many other groups - possibly because of the nature caregiving and the fact that it encompasses such uncomfortable realities as aging, illness, death, and loss of bodily, financial, and personal control."

An Open Letter to the President.

Dear President and Mrs. Obama;

I watched the President’s State of the Union speech last week with some hope, some concern for our nation, and, admittedly, a little bit of cynicism.  You spoke passionately of where the country was going, and how far we’d come, describing the steps that needed to be taken to improve our economy, to better educate our children, assist the healthcare and Medicare systems, and improve the environment.  You spoke movingly of special groups of Americans who needed our attention; those who had been disenfranchised, those who had lost loved ones to violence, those who suffered from joblessness and poverty.  Most groups I could think of were covered by you, and deservedly so, except for one; caregivers.  I guess there’s a reason we’re called the “Hidden Population” – you don’t seem to know about us, and you’re not the only one.

There are an estimated 4 million people in the US alone living with advanced stage Alzheimer’s, the biggest, but by far not the only, dementia-related dysfunction.  By 2050, there will be 14 million sufferers in America.  By 2025, 34 million people globally will be diagnosed with Alzheimer’s alone.  More than 80% of unpaid caregivers are women, and two-thirds of caregivers work outside the home.  Unpaid family caregiving saves our government millions of dollars in health care annually, and people are filling this role out of love or duty, without much public support.  These are not my statistics; these are your government’s figures, and yet, Alzheimer’s and the aging of our population received only a token mention during your speech.

When was the last time you looked on Facebook and took note of the many groups formed by average people trying to give sufferer and caregivers alike a voice and a place to speak about the terrible things they are going through?  There are almost more than I can count.  Have you looked at the blogosphere lately?  It’s filled up with sites created by ordinary people doing extraordinary things; sending their voices out into the darkness, trying to make sense of the senseless and sharing support. Lacking much official support, caregivers are forging their own; but it’s not enough.

You spoke of defending against cyber-attacks, and how nobody wanted to look back after a few years and say we should have done something.  Dementia, in all it’s forms, is poised to strike the country like a tsunami in the coming years, and there are few strategies in place to deal with it. You spoke of creating jobs in manufacturing and the computer sciences, worthy careers, to be sure, but what about finding and training more professional caregivers to meet the growing number of aging baby boomers you also mentioned, who will flood the nursing and assisted living systems, stressing inadequate resources.  We are approaching an emergency situation.

I am one of the lucky ones; my father had enough money to help me comfortably arrange for his care.  This is not the case for most caregivers, so many of whom have nothing but the sinking ship of Medicaid to clamber on to.  I hear heart-breaking stories every day in my work as a counselor/caregiver advocate, and I see that all our society has done so far is plaster band-aids on a gaping wound.  I implore you and the First Lady to direct attention to caregivers; they need our support.  Increase awareness about what they are struggling with, look honestly at the situation, include us in a speech – believe me, we could use the publicity.  I know we’re not a flashy issue that lends itself to media attention, but just go meet a caregiver, and learn about these ordinary individuals, being asked to do the extraordinary.  We’re not flashy, but we do vote.

Comfort.

I've been dealing with some stressful situations lately, including trying to complete a sale on a house that I was afraid would never sell.  I'm definitely not a real estate person, and when offers fly back and forth and inspections have to happen and deals have to be made, I just find it to be frustrating more than fun.  Not to mention finding out that the tenants that were renting it from me did some very naughty things that we had to clean up, having to clean out the remaining junk that I had stored there, and freaking out about whether something was going to fall off the house before the sale goes through.  It's been tough and I've been needing some comfort.  Strangely enough, my first and most instinctual reaction was to go see my Father to get it.

 I've been dealing with some stressful situations lately, including trying to complete a sale on a house that I was afraid would never sell.  I'm definitely not a real estate person, and when offers fly back and forth and inspections have to happen and deals have to be made, I just find it to be frustrating more than fun.  Not to mention finding out that the tenants that were renting it from me did some very naughty things that we had to clean up, having to clean out the remaining junk that I had stored there, and freaking out about whether something was going to fall off the house before the sale goes through.  It's been tough and I've been needing some comfort.  Strangely enough, my first and most instinctual reaction was to go see my Father.

I say strangely because it's been a very long time since he could understand that I was having a problem, let alone be able to help me with it, but every now and then, I get the urge to lay my troubles before a parent for comfort and support.  Years ago, in a bad relationship, my boyfriend and I fought late at night and I was scared so I left the house.  Driving around in the dark, feeling horrible, wanting someone to comfort me, I almost drove up to the Assisted Living facility where Dad was living at the time, just to be with some sort of parent.  Unfortunately, this left me feeling more lonely than ever, but I remember being surprised by how deep the impulse to go to him felt.

As I've said before, I'm pretty used to being an orphan.  I'm accustomed to taking care of myself, and, of course, my husband takes care of me, too, but there are some things I guess you'll always want your mother or father to know about.  I went over to see Dad today, following that impulse to see and be seen.  I brought him a strawberry milkshake for Valentine's Day and sat with him for a little bit, and it was good.  He was kind of perky and he laughed a little with me and the caregiver who checked up on him.  Perhaps I could even have told him some of my woes; even without him being able to understand, talking might have made me feel better.  But it was good enough just to be there for a while.

You never completely lose that first instinct of childhood; that knowledge that your parents will take care of everything.  That all you have to do is make it into their presence and things will start to get better as you divulge your problems and wait for comfort.  My father will not take care of anything for me ever again - in fact, I'm the one taking care of him.  But it was definitely nice to be in his presence today - in the midst of my troubles - and even fairly comforting.

LBD Support Group

For all my Pacific Northwest readers, I'm starting a support group for family members or caregivers of people with Lewy Body Dementia, although all dementia caregivers would be welcome.

The first meeting is March 25th, from 6 to 8pm in Seattle.  I urge you to go to another blog I've set up for informational purposes if you'd like more information!  http://caregivingnw.blogspot.com.

I'd love to see any or all of you if you can make it; I think it'll be a good, supportive time.

Vote-tastic!

We've only got a few more days left on the voting for Healthline.com's competition and SeniorHomes.com's competition.  Please keep voting!

The blog in fourth place in Healthline's contest is 'Early Onset Alzheimer's', written by Linda Fisher. She's a lovely lady who has been spreading information and support through her blog for a while now.  It would be great if we could get her into third place so that a dementia blog was in the top three.

Thank you so much for all your support and continued reading of my blog!

Badge Heaven!

I've just found out that I made the finals for SeniorHomes.com's Best Individual Blogs of 2013, which is quite exciting! Judges will be deciding between the finalists in one category; the other category is popular votes, which I don't think I'll win, but the possibility of winning the former category is wonderful.

Thank you to everyone who voted for me; if you haven't voted, it would be great if you did!  Being in the finals means I get to proudly display forevermore a badge naming me a finalist - and that's pretty great.  My blog wears all my badges proudly and gratefully, largely because it means my message of caregiver support is getting out there.

Thank you to everyone who supports me everyday; this blog, and new badge, wouldn't be possible without you!

Anniversaries, Good and Bad.

Its February 1st today! I like February, mostly because it's my birthday month; I'm going to be forty-two in just a few days.  It still feels a little weird to be forty and over, mostly because I still feel like I'm fourteen.  I feel pretty proud of where I am at forty-two, though, and I think I'm doing okay.  Mostly, I can't believe how far I've come and what blessings I've been given and what new adventures I've had.  I can't help but reflect every year, however, that it's one more birthday without the presence of my parents, who were, of course, at the very first one!

What I also think about as I progress through my forties is something I think many people who have lost parents think about; the fact that I'm rapidly approaching the age at which my mother died.  She died when she was forty-seven, so that means I only have five more years until I get to where she ended.  It can be an important anniversary for those of us who have lost a mother because it means we will get to reach ages and experiences that our mother never got to reach. I will be living what she was supposed to live, and didn't. 

Living past the age at which a parent, especially a mother, died is something of a magic line; you can't help but think about your own mortality and your own life expectancy as if the age she was will also be a finish line for you, nonsensical as that may seem.  And you never really stop mourning the important events in your life she never saw; like graduations, and weddings, and birthdays.  I imagine 2018 will be a very strange year for me; a very strange birthday and a very strange anniversary.

I do feel fortunate that I've made it this far, and I hope I make it another five, ten, twenty years or more; events in my life have taught me that enjoying each day as it comes is the best way to live.  I'm happy to be forty-two.  But I imagine that somewhere deep down inside, I'll be even happier when I'm forty-seven and a half.