CaringToday Blog

HOSPICE: DAY ONE

Debbie — Fri, 21 Nov 2008 11:50:19 -0500

Debbie gives thanks and "kisses" to their long-time family doctor as hospice for her father begins in the latest post of My So-Called (Caregiver) Life.

SO, WE WENT HOME

Debbie — Thu, 06 Nov 2008 11:34:37 -0500

After making a brave decision, Debbie continues the story in My So-Called (Caregiver) Life. Here, with hospice approved and in place she takes her father home.

EVENTUALLY, OUR PARTS WEAR OUT

Debbie — Fri, 24 Oct 2008 14:59:06 -0400

Debbie comes to a crossroad in caring for her father and makes a brave decision, as described in her latest post in My So-Called (Caregiver) Life.

GUESS WHAT? WE GOT A STAMP!

Debbie — Tue, 14 Oct 2008 10:26:02 -0400

The U.S. Postal Service issues an Alzheimer's stamp which draws "attention to the importance of the caregiver." So obviously Debbie is very excited about her next post in My So-Called (Caregiver) Life.

REHABBING VS. LONG-TERM CARE

Debbie — Fri, 03 Oct 2008 13:50:45 -0400

Facing legislators, fighting costs, figuring out the nature of caregiving, Debbie is really working it in My So-Called (Caregiver) Life.

Daddy Day Care

Debbie — Thu, 18 Sep 2008 15:43:22 -0400

Too many women at adult day care, too much uncooked pasta at home. Debbie works through a dilemma...

After my mother's death, I took time off to deal with the fallout. When I was ready to return to the work world I realized, ummm, who is going to help Dad?

Crazy Politics

Debbie — Fri, 29 Aug 2008 11:15:43 -0400

My dad has always been interested in-and truly passionate about- politics. All his life, he's liked to read and talk about politics. And he's always liked to watch anything political on TV. When I was growing up, we'd go to rallies, meetings and more meetings, not exactly favorite activities for a teenage girl.

George-isms

Debbie — Thu, 21 Aug 2008 12:46:57 -0400

My Dad cracks me up. Even before his dementia set in, he was a very funny man. Looking back through photos of my Dad, I note that he's laughing, has a wry grin or is posing in a completely inappropriate manner. As a child, for various reasons, I did not see this side of him. But now that our roles and titles are somewhat blurred, I get a peek at the guy inside.

Caregiver Olympics

Debbie — Wed, 13 Aug 2008 11:21:47 -0400

A lot of people who know caregivers would consider what we do to be an Olympian feat. But, if we caregivers were to organize our own Olympic Games, what would they look like?

The Marathon

Identification Heft

Debbie — Thu, 07 Aug 2008 10:25:31 -0400

There is no pure science to caregiving. It's more of a go-with-your-gut, hope-for-the-best thing. Which isn't to say we needn't educate ourselves or develop skills to make life easier and better for both ourselves and the loved ones in our care. But which skills help us succeed? Which help transform caregiving from what we do to who we are?

Celebration of Life

Debbie — Wed, 30 Jul 2008 10:06:07 -0400

On Sunday, everyone got ready to go. From the biggest to the littlest, oldest to youngest, everyone was showered, shaved and spit-shined. We were going out on the town.

Inside Out

Debbie — Tue, 22 Jul 2008 11:55:57 -0400

I just recently admitted to myself how I categorize and characterize people by their life-roles. The doctor is a wise man with all the answers. The minister is calm and patient. The child is questioning and pushes his or her parents to their limits. The parent is old, mature and somber.

Work and Caregiving

Debbie — Tue, 15 Jul 2008 11:12:52 -0400

In my “other life,” I work in Human Resources. I love the work and I love the interaction with co-workers and the employees I serve. I love meeting people, welcoming them to our company, and seeing my work as having value. And, of course, there’s the always-needed financial compensation. Recently, though, I was struck by my career’s path.

How Not to Lose the War with Alzheimer’s

Debbie — Mon, 14 Jul 2008 14:23:51 -0400

Last night Dad came to me with a very somber expression on his face. I asked if everything was okay and if there was something he needed. What he said was not what I expected to hear.

Dad: I need to get some of my messages.

Debbie: Okay, Dad, I can work on that. Which ones do you need?

Independence

Debbie — Tue, 24 Jun 2008 11:29:30 -0400

As children, our independence is limited and seemingly granted at the whim of our parents. When adolescence hits, it seems the real fun begins; we struggle for a separate identity from that of our parents and demonstrate out need to push the envelope, learning our limits in a sometimes painful way.

Driving Mr. Reagan

Debbie — Wed, 18 Jun 2008 11:17:49 -0400

My daughter has applied for a job with the federal government and is, therefore, undergoing a background investigation for a security clearance. Putting aside the whole idea that my baby is old enough for a “real job,” I’m getting calls from family and friends as they receive their calls from the investigator.

Caregiver Lessons from Waikiki

Debbie — Wed, 11 Jun 2008 16:15:09 -0400

I fondly remember summer vacations with my parents. As an only child, it would be "just the three of us." Then, as I grew older, it was "the three of us—plus one guest to shut me up." Finally, it came down to "just the two of them."

Do No Harm

Debbie — Thu, 05 Jun 2008 15:09:44 -0400

“Do no harm." Maybe because my mom was a nurse, this phrase from the physicians’ oath was a living presence in our family.

I understand it as a parent: Give your kids as little fodder for the analyst’s couch as possible.

I understand it as an employee: If you choose not to heed these words, you lose your job.

Cookies to the Rescue

Debbie — Wed, 28 May 2008 15:45:02 -0400

My mom made most of the decisions about her care right up to the end. I’d say she was a control freak, but that might seem harsh. Let’s say she enjoyed exercising her right to choose her own path and destiny. Doesn’t that sound better?

Beulah, Peel Me a Grape...

Debbie — Thu, 22 May 2008 16:07:09 -0400

As I talk to caregivers, legislators, even the lady behind me at the grocery store, I find everyone has a different vision of what constitutes respite, which I see very simply as time off for the caregiver. While that definition is relatively simple, clear and near universal, how the time is used, or how some think it should be used, is a fluid concept.

A Beautiful Weekend

Debbie — Tue, 13 May 2008 12:08:28 -0400

Over this past Mother’s Day, I got nostalgic about my mom. Oh, not the sad stuff, but the positive energy that made her who she was. That streak of bad girl in me that I so know came from her and continues on in my own daughter. So, as the current “Dowager Mother,” I used my power for a little respite, a time for me to sit on the deck, feel the sun, relax and think about my mom.

Adventures in Dating

Debbie — Tue, 06 May 2008 16:42:48 -0400

Respite care—also known as what allows caregivers to get some “me” time—is vital to both one’s mental and physical well-being. Someone comes into your life and home with the skills and training to care for your loved one while you have time off for good behavior. Sounds like a luxury, doesn’t it?

Curing Cabin Fever

Debbie — Thu, 01 May 2008 11:32:57 -0400

Spring has sprung here in Alaska (don't be fooled by last Friday's 12 inches of snow). Winter in Alaska can be marvelous. But, as you've likely heard, we do have snow, cold and only a few hours of daylight. The darkness can be tough on your psyche, as you awaken in the dark, go to work in the dark, and then get off work in the dark—for months.

Smile, Laugh, Love

Debbie — Tue, 22 Apr 2008 12:24:24 -0400

As Dad's dementia progresses, with an increase in speech difficulties and a decrease in short-term memory, I find I more and more miss his sense of humor. My dad, you see, is and always will be one of the funniest people I will know. His sense of humor ran from slapstick to wry and droll, and was highlighted by his ability to verbally spar. Here's what I mean...

State of the Caregiver Address

Debbie — Wed, 16 Apr 2008 14:14:55 -0400

Crisis averted!

I Forgot

Debbie — Tue, 25 Mar 2008 10:35:32 -0400

During the process of caring for my dad, I forgot one important thing. I have gotten so wrapped up and wrapped around the bend, that the basic reason I am doing this got lost in the shuffle. Well, let me try to explain...

Philosophy 101

Debbie — Wed, 12 Mar 2008 10:39:15 -0400

You Catch More Bees with Honey

Debbie — Tue, 04 Mar 2008 11:14:33 -0500

Caregiver-itis

Debbie — Tue, 26 Feb 2008 11:23:32 -0500

Home Again

Debbie — Tue, 19 Feb 2008 16:33:32 -0500

The Reality Show

Debbie — Tue, 05 Feb 2008 12:46:43 -0500

The Birthday Gift

Debbie — Tue, 29 Jan 2008 15:43:20 -0500

What Ifs

Debbie — Tue, 22 Jan 2008 11:07:15 -0500

I had a recent conversation with a wonderful friend and fellow caregiver. While our specific caregiving situations are dissimilar, our experience follows the same path.

Good Intentions

Debbie — Tue, 08 Jan 2008 10:51:06 -0500

Happy New Year!

Defending Our Choices

Debbie — Wed, 12 Dec 2007 15:09:59 -0500

I had an interesting conversation yesterday. I was on the phone with my best friend, Tina, who I've known for over 20 years. We've been together through illness, marriage, job changes, death, children...and everything else life has to offer. I love her dearly, as she does me. However, with her being probably the only person to have the courage to ask, I found myself in the position of having to explain to her why I choose to care for Dad at home.

(Re)Calling Long Distance

Debbie — Wed, 05 Dec 2007 10:47:33 -0500

For a period of time before my husband, kids and I moved in with my father to take care of him fulltime, I was a ‘long distance' caregiver. And, to be quite honest, I don't think I was very good at it.

Thanksgiving

Debbie — Tue, 27 Nov 2007 15:44:08 -0500

What a great holiday Thanksgiving is. We cook, we eat, we unbuckle our pants, watch TV and sleep.... Only in America! No matter how you celebrated it, I hope Thanksgiving was good for you.

The holidays have become bittersweet for me. I miss the big family gatherings with all their hustle and bustle. I am even often tempted to skip celebrating—I heard that gasp of horror! But, yes, I have been tempted to abandon the season.

Caregiver Serenity Mantra

Debbie — Tue, 20 Nov 2007 16:31:13 -0500

While watching a movie the other night, I couldn't help but notice that the main character kept reciting the "Serenity Prayer" to calm himself. I started thinking about how often I hear myself saying this mantra during all aspects of my life—entertainment, religion, child rearing (more like, "Give me patience!"), marriage (amen) and, of course, caregiving. It's so easy to get caught up in the physical, mental and emotional aspects of caregiving that it's easy to lose focus. I am speaking from personal experience here. But, by going back to those basic tenets that I hold dear, I can circle back to why I am doing what I do. So, loosely quoted and with my thoughts intertwined, let us begin...

Grant me the serenity to accept the things I cannot change...

I have to accept that Dad does not wish to be forgetful; he does not want to leave the ice cream in the refrigerator so that it melts and runs everywhere. (Can you tell what happened last night?)

Top 10: Handling Stress

Debbie — Mon, 12 Nov 2007 09:36:17 -0500

To be honest, I've been feeling a little stressed lately. But stress can be a pretty sneaky thing. There you are, going through life, thinking you have it all under control, and bam! The trick is to learn the warning signs and circumvent in the inevitable.

Ripples in the Pond: Family Lore

Debbie — Thu, 01 Nov 2007 15:47:46 -0400

Tradition and lore are among the things I love most about family. Hearing stories of my parents' youth, their courtship, and tales of their extended families is one of my favorite things. Sitting around the table, listening to the same stories time and again, we laugh at all the same places as though it was the first time we heard them. It is reassuring to see the generations pass down the family fact and fiction that makes us who we are today.

Family tradition is how I know how to "do a holiday." As a young girl, I would help my mother with Thanksgiving cooking, Christmas present-wrapping, dyeing of Easter eggs and throwing birthday parties. I treasure those memories and relish passing them on to my children, knowing they will pass our ways on to the generations to come. I know that my daughter will hide Easter eggs and have her children search for them in her backyard. I know my son will hang piñatas on the deck at birthday parties. I can see the years unfolding, and as I grow older (and wiser?), I enjoy a sense of peace in knowing that the family will go on, at least in some ways, as I've always known it.

What I did not anticipate is my dad's dementia and how it would affect tradition and lore. Dad's dementia has given him an unprecedented freedom to be who he wants to be. It has ripped apart the fabric of time in his head so that, at any moment, he can be any part of himself—little boy George, teenage George, newlywed George, the list goes on. That means I, too, get to play different roles in Dad's life which provides me the opportunity to relate to him in different roles. I've learned:

Having the Difficult Conversation

Debbie — Thu, 25 Oct 2007 10:14:11 -0400

Sometimes caregiving is not about getting better. Sometimes our role as a caregiver is to lend support and usher our loved one into whatever comes next.

I have had the privilege to help both my mother and grandmother through their final days. I do not use the word privilege lightly or with flippancy; I truly believe it was a privilege to share that time with them. My mom, being a mom until the very end, ensured that she gave me the necessary tools to help her and my grandmother through this time. And the most valuable tool she gave me was her permission. Let me explain.

The Yin and Yang of Caregiving

Debbie — Thu, 18 Oct 2007 15:56:59 -0400

When I picture myself as a caregiver, I have an image of a serene oasis amid chaos. I am the hand that provides nutrition, soothes worries, reins in the miscreants with a gentle but firm grasp, and holds my dad's hand with love. I am loath to admit it, but I noticed that, in this scenario, the world revolves around me. I am the focal point and, frankly, that just isn't true. I am half of a partnership with my dad. We do this together, and the other day I had a vivid reminder of how much my joy as his caregiver comes from his simply being Dad.

Circular Logic

Debbie — Thu, 11 Oct 2007 11:16:15 -0400

When I was in school, circular logic was considered a bad thing. Okay, not bad as in going-on-your-permanent-record bad, but it was a frowned upon way to argue. For those unfamiliar with the concept, circular logic is when you simply continue to restate your statement in different terms. And as an adult in business or social situations, it's still a bad thing. But as a caregiver, circular logic has become my friend and among my most valuable tools.

Ripples in the Pond: Advocacy

Debbie — Thu, 04 Oct 2007 11:01:34 -0400

When I became intimately aware of the financial implications of caregiving (see "Ripples in the Pond: Finances"), I became indignant. No, not indignant. Plain old spitting-nails mad. I was furious. Caregivers have so many good fights to win that losing the financial battle just seemed wrong. There had to be a way out—and I was determined to find one...or make one!

I started talking with my local Alzheimer's Association. I started talking to everyone! God forbid I should run into someone with some real power; I'd take every minute I could get of that person's time.

Then I got a little smarter and signed up to be on the email lists of my state and federal legislators. Imagine that, they have schedules and share them. Silly people. So I would suit up Dad and we would go to every memorial, dedication, ribbon-cutting, whatever; if someone with some power was going to be there, Dad and I would be there, too—and you'd be guaranteed that I'd have something to say and find a way to get it said.

At the same time, I signed up to be an advocate on the national Alzheimer's Association website (www.alz.org). They sent me emails that told me what to write, when to write, what bills were in jeopardy and who were the power players. All I had to do was write or call. This advocacy thing seemed so . . . easy.

Then the magic started. A local coalition of senior-service providers, AGENET (Alaska Geriatric Exchange Network), asked our local Alzheimer's Resource Agency for names of caregivers to participate in a "fly in." (In Alaska, we have no roads to get us to the capital, so you've got to fly or boat into Juneau to meet with the legislators while they are in session—no kidding!) I screamed, "YES, ME, ME, PICK ME!!!!" And off we went.

It was Capraesque. We showed up with some appointments already made, a vague idea of what we wanted, and the willingness to try to get everything we needed. By the end of the three days, and against all odds, we had gotten about $250,000 in caregiver-earmarked bucks put back in the budget. Before we'd gotten there, we had been told we were too late, that the budget had been put to bed, that these are conservative times, and that oil and gas was the priority.... We were naive enough not to listen—and we prevailed!

Now I was addicted. I began to see how advocacy could create change. And I was then fortunate enough to participate in the Caring Today/Home Instead Senior Care "Give a Caregiver a Break" essay contest and be awarded a prize. Along with this came a small bit of publicity, which provided the opportunity for me to tell my story, shake a few trees for dollars and to write this blog. This was real progress.

The next year, I went back to Juneau a little more organized, a little more seasoned and a little tougher. And the legislators remembered me. And they remembered what we wanted. And I told stories. Stories of my dad. Stories of my friends. Stories of other caregivers. And they listened. And again we prevailed and programs were funded.

On the heels of that success, I went to Washington, DC, and participated in the National Public Policy Forum on Alzheimer's Disease. I met with my federal legislators and explained the crisis that was coming. Again, I was a little naïve, and the numbers were so huge that I was a little intimidated. (Asking for a billion anything takes guts.) But the programs got funded. The National Institutes on Health received a tiny increase (a pathetic two percent), but we again prevailed. I was winning. No, I wasn't winning. Caregivers were winning!

Those few conversations I'd had with caregivers had started a chain reaction that culminated in millions of dollars going toward programs to support caregivers. But we are not done yet. There is still so much to do, in my state, your state and nationally. But I can see the difference. I have been lucky enough to see that a few overwhelmed caregivers could get motivated, decide that they were mad as hell and not going to take it any longer—and make a difference.

Of course, I'm going to finish up with an appeal. The House of Representatives has approved a 1.9% increase in funding for NIH to spend on Alzheimer's research. Several senators are requesting that the funding be increased by 2.8% (a difference of $600,000). Every dollar counts and every letter counts, so please click here to tell your representatives that this research is important to you and your loved ones. Thank you.

Ripples in the Pond: Finances

Debbie — Thu, 27 Sep 2007 15:20:54 -0400

There's no denying it: Caregiving is a money drain. A financial hemorrhage. An asset depletion. Some of us start out better prepared financially than others, but each of us takes a financial hit when we decide to care for our loved ones. At any support group (which I consider any meeting of two or more caregivers), talk will turn to the financial impact this has on our lives.

Fact is, it was the financial hits that prompted me to become a caregiver advocate. Over and over again I would hear the same stories:

Fight or Flight

Debbie — Thu, 20 Sep 2007 10:28:55 -0400

In life we really have but two choices: fight or flight. Our bodies and minds are geared for these two responses by nature. When faced with opposition or danger, our responses fall into one of these two categories. With the addition of wisdom, we pick our battles wisely and fight only the good fight. And frankly, this has become my approach to caregiving; I can fight it or flee from it.

Finding Your Way

Debbie — Thu, 13 Sep 2007 08:03:35 -0400

When dementia or any serious illness strikes, we each deal with it in our own way and in our own time. We work through the stages of grief and come to grips with our emotions and the situation in accordance with our beliefs and principles. My mother, who was a trained nurse, responded to dementia with facts and the firm belief that, if my dad was oriented to certain spaces at certain times often enough, he would remain oriented. My son believes that a gentle hand to guide my dad will lead him from the confusion to peace. As for me...well, I fall somewhere in between and often feel I have fallen short of meeting either guiding principle.

Dementia Is...

Debbie — Fri, 07 Sep 2007 12:01:44 -0400

Remember the 1970s (and not because it's the only era you can remember)? Me, too. (Ooops, once again, I show my age!) Back then, there were posters, comics and figurines featuring this cute little couple, each with the tagline "Love is..." followed by a punch line or cute sentiment.

Lately, I've been thinking about slogans and taglines that fit the caregiver's life. So, here's what I came up with:

Dementia is...

No-Rest Room

Debbie — Thu, 30 Aug 2007 10:01:30 -0400

My life has become centered around bathrooms. Funny thing is, when I was a teenager, my parents swore I spent every waking minute in the bathroom, primping and looking at myself in the mirror (see me rolling my eyes at mental images of my teenaged self?). But it wasn't until I became a caregiver that I truly became obsessed with them. Who knew that life's necessary little function would be the controlling factor of my every waking moment (yeah, ok, that's a stretch, but it caught your attention, didn't it?). But, really, a typical day for me goes something like this:

How You Can Help

Debbie — Thu, 23 Aug 2007 16:19:44 -0400

I've been given this opportunity to ask for your help. Right now Congress is in recess until after Labor Day. During this time, senators and members of the House of Representatives usually are meeting with their constituents, holding town meetings and the like. And it's at this point, when members of Congress are trying to learn the issues that matter most to the people that your help is needed.

What a Ride

Debbie — Thu, 16 Aug 2007 11:53:35 -0400

I remember how, when my mom was dying, she and I would spend a lot of time talking about life and how precious and valuable it was. The sicker she became, the more she focused on how much fun life was. And what fun she had during her 60-plus years. The more she talked, the more I learned about her. And as the care became more intimate and her needs more immediate, her role as mother began to fade and I had the privilege to see her for the woman she was, not just as my mom.

Life Lessons

Debbie — Thu, 09 Aug 2007 08:37:53 -0400

There are crossroads in each of our lives. Sometimes we select the right path and other times we want to beg for a do-over. (A do-over is that unique tool from our childhood that allows us to start fresh anything and everything that's not working out quite right simply by calling out, "Do-over!")

For me, caregiving is one of those crossroads. And I have to admit I am not necessarily calling for a do-over. I have learned some painful lessons, but in such a unique and loving way that I realize this has not been wasted time for me. This has been a time to take personal inventory and realign priorities. Some of the lessons include:

Using a singular color scheme in the bathroom was an error in judgment. White walls, white sink, white trash can and white toilet has created toileting challenges for my dad. Actually, the challenge is mine as I continue to insist to him that each fixture serves a different function and that they should not be used interchangeably. Silly girl, I am.
Potpourri is really tricky stuff. It looks like food, smells like food, but (according to my dad, who's tasted the stuff) does not taste like food. Who knew?
Cat food. See "Potpourri."
Stress is not always a good thing. Yes, all you wise men and women reading this, you all knew this. I, however, was clueless. I think I may have been an adrenaline junkie. I loved it when the deadlines were piling up, I thrived on all-nighters and thought the creativity and adrenaline rush was exhilarating. Duh, that wasn't fun; that was scary!
Uneventful days are a blessing (see stress item above). I am not a hamster trapped in an aquarium, running on my little wheel as fast and as hard as I can to get...nowhere. I don't need disasters to be creative, to feel needed, to sweep in and be the hero. Nope, my ego is sufficiently built up by a quiet night talking with Dad. Keeping up a conversation with someone with dementia can be exciting stuff; in a single conversation we visit the past, fix the present, rewrite family history and generally solve the world's problems. I now look forward to that time and find it peaceful. In revisiting the same issues (with the same responses), Dad has created a flow to conversation that I unwittingly have learned to crave. It is not the normal exchange of information to entertain or to inform, but a moment to say "I value you, you are important and I need to hear what you think"—even if it is the same question, over and over and over again.

TV or Not TV? That Is the Question!

Debbie — Thu, 02 Aug 2007 14:07:34 -0400

While recovering from recent dental surgery, I had time to ponder the mysteries of life: Where does the other sock disappear to in the dryer? Who built the pyramids? Why do boys have such incredibly long eyelashes? You know the drill.

All the World's a Stage

Debbie — Thu, 19 Jul 2007 16:59:19 -0400

You! Caregiver! Superstar! Brava! A round of applause for each of you out there. Actually, a standing ovation is deserved. Each one of us deserves roses, champagne, all the opening-night kudos.

Where does that come from? Well, I had another eureka moment! Be afraid, be verrrrrrry afraid. Not really, but you are warned. I had four o'clocker (one of those nights when you sit up in bed at four a.m. having solved war, famine, poverty, prejudice, whatever, and don't quite remember it in the morning), and as I've learned to do, I jotted enough notes to help me remember my late-night revelations but not too many that writing them down will keep me up 'til dawn.

So, here is my latest: Shakespeare was right. All the world is a stage and we really are just players! Truly! What does this mean to me as a caregiver? (You knew that eventually I was coming around to this, didn't you?) To me, it means my time on earth with my dad is like a three-act play.

Act One
This is when Dad and I met. I was a baby and the light of his universe. He was my daddy, and my world revolved around him. He was so big, so strong. He had all the answers. He could do anything. And I could make him do anything for me. All I had to do was crawl into his lap, look up into his brilliant blue eyes and explain how whatever I wanted was really a necessity and my social status depended on it. This was the period when (okay kids, get this) before there were malls in New Jersey! (Am I old or what?) So every Saturday he and I would go to Sears. We would look at tools, records and buy me a dress. Every week, without fail, we had that time together.

Act Two
As in any good drama, this is the sad part where the pain comes. This is when I became (gasp, shudder) a teenager. By then Dad was really not that bright, maybe even dumber than dirt. He did not understand my needs because all parents just don't understand, and that was getting in the way of my success. And then I went to college and was really just too busy to call much. Then I moved across the country, started a family, and it was just too hard to visit often.

Act Three
This is the present, and the sweetest part—the grand finale. Now is when I get to care for Dad. I have realized that as I have moved through these periods of my life, my parents have come through as well. Our relationship has evolved as our personalities—and our roles—have evolved, and that is how it should be. A child has to let go of her parent to become independent and to start her own exciting journey. And a parent has to allow her to go, but welcome her home when the road gets tough. Well, now it is my turn to welcome Dad home, to open my arms to him. I just say to myself every morning, "Welcome home, Daddy, I am so glad to be on this journey with you."

Just in case . . .

Debbie — Thu, 12 Jul 2007 22:24:58 -0400

This is a scary topic. Luckily, I haven't had to deal with any long, scary procedures but I have had some time to consider the "what ifs" lately.

What if I got sick, how would I care for Dad?
If I were unable to go on, who would step up?
Who else knows how to answer his questions?

Fiction and Fact from Grandpa George's Almanac

Debbie — Thu, 05 Jul 2007 13:25:25 -0400

There are times, when chatting with Dad, that a part of me observes the changes that dementia has caused in his brain. This is the clinical side of me that marvels at how dementia works or, I guess I should say, how it stops a person from working.

It is readily apparent through his questions that he is unaware of time passage; the past and the present have merged into one big, happy (most of the time) fog. He also is losing his ability to read and to understand the objects in his world. Because of the dementia, most of the time he doesn't recognize these as losses. Instead, they become one of those well-I-guess-that's-the-way-it's-going-to-be moments.

All his life, my dad's loved and enjoyed children. Our house was always filled with everyone else's kids. Now that it's summer, my house is polluted with them, mostly of the 9- to 15-year-old male variety. They flock in not because of our sterling accommodations or germ-free environment, but for our plethora of video games. We have virtually every flavor and color available for their amusement. The beauty of the situation is that Dad sees himself as the center of the horde, the Alpha Male.

Dad has a special chair and a TV table at hand, with a drink and snacks. He sits in his spot and supervises the living room and the various groups of youngsters. I have spoken with each of these young men and explained Dad's dementia and laid down a set of ground rules:

Living Large

Debbie — Fri, 29 Jun 2007 09:00:26 -0400

The other day Dad came out of his bedroom seemingly disgusted with life. To understand the implications, I have to give you the lay of the land.

Dad and Mom had bought the house I live in when they moved to Alaska about 13 years ago, intending it to be their downsized retirement home. But, since my family and I moved here, there are six of us living in a three-bedroom house. Tight quarters? Sardines should come to mind. To get out of bed, my husband or I have to crawl over the other. In the middle of the night, one or the other will announce "Roll over," because the sheer act of repositioning oneself could cause the delicate balance that is our bedroom to collapse.

Dad has the master bedroom, with his own bath (I mean, really, how could we uproot him in addition to camping out in what, until we moved in, had been his sanctuary?). So the rest of us share the remaining two bedrooms, a living room, kitchen and bathroom. Needless to say, space is at a premium.

The second salient point is, I would not have chosen to buy this house. It is an older structure in need of repairs from neglect that resulted after my parents' various illnesses got in their way. And, simply, it is just not my style. However, we joyfully live here in order to care for my dad. With dementia, consistency is vital, so we have tried to keep his home as it was before we moved in, with only small necessary modifications for Dad and for our increased family size.

Now, I'll be honest. Sometimes, when I look around my teeny-tiny bedroom, with its one dresser and one closet to be shared by two adults, I think, This is not great. And when I then look at Dad's fairly spacious room, I grumble. I enviously look at the space—the dual closets, the private bath, blah, blah, blah. You get the picture. I have flashes of what my Home and Garden cover shoot would be like if we weren't here (not that I would ever make the cover of Home and Garden—too scatterbrained, too busy and, frankly, not devoted to the whole tidy thing).

So, to get back to where I started...the other day Dad comes out of his room grumbling and the following conversation ensues:
Dad: Whose house is this?
Debbie: It is my house, Daddy. We live here together.
Dad looks at me suspiciously over his glasses and makes a disbelieving grimace.
Dad: No.
Debbie (trying to be reassuring): Yes, I bought this house. It is your home.
Dad: Why in the world would you buy this?

I am flabbergasted, remembering that he picked out this house. Actually, he and my mother had a huge row about this house; she hated it and he loved it. He actually went and made a full-price offer on it without consulting her (another story for another time, as that was the beginning of our Adventures in Dementia).

Time Well Spent

Debbie — Thu, 21 Jun 2007 13:38:35 -0400

I sometimes wonder what I did with all my free time before caregiving came in to my life? It's funny how life seemed to be full and the days so busy. But, really, how busy could they have been if I could add to all that my becoming the primary caregiver for my dad? I mean, did I spend all my time primping or shopping (I know I wasn't cleaning all the time). I think what happened is I have changed my priorities and standards.

Before I had children, a date was all-night clubbing
After kids, it was dinner and a movie
After caregiving, it is going to the grocery store alone with my husband

Before my first child was born, I owned a whole host of beauty products
After she was born, I had Chapstick
Since I started caring for Dad, washing my face is my sole beauty regimen

Before the kids came along (when I had disposable income), only the best would do
After the kids (and I got a hint of what being broke is like), I still could afford to pass on the generic and buy name brands
Once Dad became a fixture in our home, generic is the only way to go

Before kids, clothes were a weakness of mine; when I was 14, I discovered the allure of designer jeans and my mother supported my habit
With kids, my wardrobe disintegrated into work clothes or sweats
Now that I am a caregiver, people are lucky if my clothes match

Before kids, I was hoping for a successful career
Once I started having kids, I still wanted to be on the fast track to the top
With caregiving thrown in, I want to go to work so I can talk to someone new

Before kids, you could eat off my kitchen floor
Then the kids came and, if you could see the floor, it most likely was fairly clean
Once caregiving came along, the state of my floors became irrelevant; safety is my primary concern

Before kids, I had a huge number of friends and enjoyed a full social life
After kids came along, a full social life was logistically too difficult and, frankly, chatting with the other mommies during a play date was about as wild a time as I could handle
As a caregiver, my social life consists of advocating for seniors

Make Your Voice Heard

Debbie — Thu, 14 Jun 2007 08:41:21 -0400

Since becoming a caregiver, I have become an active and passionate advocate of senior issues including healthcare, long-term care, Medicare, financial support for low-income seniors, dementia care, Alzheimer's research and more. It became very clear to me early on (at least here, in Alaska) that seniors have only a small voice and that our legislators have not heard it.

Twice now I have had the pleasure to go to our state capital, Juneau, (no easy feat as it is accessible only by air or water) with a fabulous group to speak with every Alaskan state legislator about senior needs. Each year, we have had some small successes with funding being restored or attached to various programs that are vital in our state.

In 2007, I had the pleasure to attend the Alzheimer's Association Public Policy Forum in Washington, DC. Let me tell you, I got some education. The numbers tossed around in DC are so incredibly huge it boggles the mind.

Here are some of the highlights regarding the effects on federal funding:

Conversation

Debbie — Thu, 07 Jun 2007 10:34:42 -0400

There is an ebb and flow to conversation that is learned when we first begin to speak. A baby will begin with one or two words, and as their focal point (Mama or Papa) responds, the baby learns to anticipate a response. This lesson is carried through childhood and adulthood; as a child we learn to say, "Waaaaaaaz up" to our peers (to the horror of our parents and English teachers), and as an adult, we learn to greet the boss (or spouse) in our life with a respectful "Good morning!" Okay, that might be pushing it, but we know we are supposed to say something like that. In return, we expect certain responses from those we greet.

For those with dementia or other disorders that make social interaction difficult, the expected give-and-take is no longer a given. I have come to realize that my dad's dementia causes him not only to "unlearn" language, behavior and events but to "unlearn" the expected responses from others, including me. At times his unexpected responses or conversational leaps will make conversation, well, challenging, to say the least. This is where I, as the caregiver, have to get creative and learn to follow the leader (Dad). Just because a sentence begins with one subject, does not mean it will end on the same subject, because that is simply "not done" (this is said with a very haughty tone, through clenched teeth "Rallly Daaahlink").

For instance, when I introduce Dad to my friends, he may respond with a blunt, "Who are you? Where do you live?" At one point, in the hospital, there was a young male nurse who really enjoyed my dad. When I was picking Dad up to take him home, Dad asked me if the young man was "one of the Bennetts" (the Bennetts being boys he grew up with in New York). The nurse said he was not, and he told his name. Dad looked at me and said, "Well, he looks like a Bennett to me!" I affirmed with a cheerful, "Why, yes, he does. But that's okay, because you like the Bennetts." Dad looked at me in shock and said, "No, they are all a bunch of alcoholics." The nurse and I laughed so hard that other staff came in to see what was going on. Dad was unsure why I was laughing, as he had totally switched from talking to the nurse to talking to me without breaking stride. But he did know he had made me laugh and joined in with a hearty if unsure chuckle. If I had tried to bring him back, to enforce "the polite, expected response," we all would have missed a wonderful moment.

Conversational clues also have become meaningless. I used to make a point of calling my dad "Daddy" to reinforce our relationship. He responds to that title, but that does not mean he sees me as his daughter. He no longer makes that connection. At times he may call me by another name (his sister's, mother's, wife's, grandmother's, etc.).

Family Dynamics

Debbie — Thu, 31 May 2007 15:38:56 -0400

Everyone has his or her own style of caregiving, having discovered what works and what doesn't. While caring for my dad, I came to the realization that my children would one day (I hope) care for me. Looking at my three kids, I began to wonder: What will they be like as caregivers when their turn comes around? Will birth order affect each one's caregiving style? I know these aren't questions that keep most caregivers up at night, but they did me. Well, to be honest, I was up anyway since summer is coming to Alaska and the long days are wreaking havoc with Dad's sleep schedule. So read on if you dare and remember I was a wee bit sleep deprived when I came to these conclusions.

Public Display of Affection

Debbie — Thu, 24 May 2007 08:49:51 -0400

May 17, 2007, was my daughter's high-school graduation, a momentous occasion for all of us. She is moving out of our loving arms into the cold, cruel world. Well, not so much cold and cruel as hot and humid (Atlanta, GA). The eldest, the first to leave, sob.

I am a little embarrassed to admit this publicly, but sometimes I have to give myself a pep talk before taking Dad anywhere. The preparations are somewhat like planning a military campaign:

Signs of Things to Come

Debbie — Thu, 17 May 2007 08:45:15 -0400

Alaskans have a quirky sense of humor. Most of us are transplants, in that we were born somewhere else but chose to live here and like to prove that we are "worthy of being Alaskan." An old joke goes: To be a true Alaskan you have to wrestle a bear, swim in the Yukon River . . . and you keep expanding the list as things come to mind. One recent addition: Have a medical condition that requires care outside of Alaska. Well, that was my mother's challenge anyway.

A Mother's Day Message

Debbie — Thu, 10 May 2007 09:04:19 -0400

As Mother's Day approaches, I feel somewhat wistful. I recall with fondness and sadness the last week I spent with my mother. Mom died June 5, 2004, the same day President Reagan died, which is sort of ironic; as one person with Alzheimer's left our world, I became responsible for someone with Alzheimer's in my world. I saw it as part of the cosmic balancing act that seems to so often occur.

Caregiver Cookies

Debbie — Thu, 03 May 2007 12:45:04 -0400

I don't know about you, but I'm always looking for a great cookie recipe. There's something about warm cookies and cold milk that sends me right to my "Happy Place." So I would like to share my favorite recipe with you.

Ice Cubes

Debbie — Fri, 27 Apr 2007 10:56:58 -0400

Like many caregivers, I find money always seems to be in short supply. (Actually that phenomenon is known by most of us, caregiver or not.) I live in fear of an unexpected house repair. I get twitchy when I hear things like, "Roof Leak," "Boiler Leak," and—gasp!!!—"Wood Rot." I monitor most of the household appliances the way I once examined my face for lines or, heaven forbid, a gray hair atop my head.

Caregiver Supreme

Debbie — Thu, 19 Apr 2007 09:56:48 -0400

If caregivers were tacos, I would be the Taco Supreme. You know, the one with the lettuce, tomatoes, salsa, sour cream, cheese, onions, peppers, meat, guacamole, the works—the Taco Supreme. The one that costs more and is sooooooooooo much better that you just know you can't live without it.

Well, that's how I was feeling, like the Taco Supreme of caregiving, on top of the caregiving world. Over the last week I had managed to:

Clean almost all of the house
Vacuum almost every rug
Wash most of the dishes
Reduce the mound of laundry to a heap
Get the kids to school on time practically all week
Forget to provide lunch money only once
Keep the fish in the tank alive (except for those that eat one another, and I don't take responsibility for that)

Sisters

Debbie — Thu, 12 Apr 2007 15:19:45 -0400

My dad's sister died today.

My surviving aunt, Stella, called to let us know that Aunt Barbara had passed away. Aunt Barbara had been living in a nursing home and had a heart attack. She was taken to a hospital, where she received the best of care but, unfortunately, she did not pull through. She was the eldest of my dad's siblings, and one of the last remaining. My dad's generation now has dwindled to his sister Stella and himself.

Stella is older than Dad and a ball of fire. She still drives, lives independently and cares for a son who is unable to walk. She is both the family matriarch and historian. While Aunt Stella and I talked, we discussed how everyone in the family was doing and generally caught up (living 5.000 miles from your family means you need these occasional updates).

After the call, I started to compare Dad's health with the robust good health of his older sister. The comparison began benignly (as these things usually do) with:

Bumper Stickers

Debbie — Fri, 06 Apr 2007 21:13:23 -0400

Have you ever driven down the highway and looked at the bumper stickers around you? I do all the time. I know I probably should be paying attention to the traffic but, hey, its Alaska and a traffic jam is an eagle and two moose.