I Move Toes

I Deserve The Title...

2010-05-06T01:39:00.000-07:00

...of Worst Blogger EVAR.

Or I should at least be a contender. I'm sorry I've been away. I've kept up a few posts over at caregiving.com, but I have no excuse for my absence here but my own laziness and restlessness. (Yes, you can be afflicted with both of these at once. I am living proof.)

Maybe "laziness" is a bad word. Perhaps "procrastination" is better.

Anyway, Gram is still holding on. She isn't doing well at all, though...and the Hospice nurse was surprised that she made it through last week. Yesterday and today were bad days. She couldn't speak at all, and was almost completely nonresponsive tonight. We are also having to force liquids down her with an eye-dropper. I just have an awful feeling that she'll end up dying of dehydration. I hear that it's very common for this to happen and that a majority of folks in Gram's state do in fact die from lack of fluids. Personally, I can't stand the thought of this, which is why I forced a cup of liquid into her tonight. I don't think she wanted it, or at least not all of it. It took five hours to get it down her with the dropper, and a few times she closed her mouth on top of it, almost as if to mock my attempt! How dare, Ms J!

Oh, my Ms. J. I don't want you to leave me. I know you have to, but I don't want you to and I will miss you so much. I just hate to see you in pain...

I told her this. It didn't come out that well, and I'm not even sure she could hear me. All I could get were a couple soft moans and a furrowed brow. I just laid my head on her chest and cried for a little bit, not bothering to hide it from her. I just don't think any of us gain ANYTHING from the "brave face" bit, any more. We're past that point. Now is the time for honesty, for conversations from one soul to another...even if one can't speak. So much can still be said.

I was in a rotten mood earlier today. I was tired, my back hurt, and I just found myself becoming highly annoyed at my relationships with some of my friends. In one moment I felt like I wanted to reach out, and in the next moment I was upset that more of my friends hadn't reached out to ME. I'm told that I need to stop "demanding" that people act the way I want them to act. I don't think it's "demanding." I think it's just "expecting" and then feeling disappointment when those expectations aren't met. To me that's different than an unspoken demand. Maybe it isn't. Don't care right now, honestly.

To be fair, I know that I haven't reached out to people in the past as much as perhaps I should have. Maybe I'm paying for it now. I don't know. Part of me still feels like I'm getting the ishtty-end of the stick, though. I dunno.

I do know that it's 2am and I know I should be asleep, but I'm afraid. I am afraid she will die tonight and I won't have been there to help her through her last moments. I'm afraid she will feel isolated and alone.

BUT...even though she's had a hard time breathing normally, she hasn't done that fish-breathing thing yet. So...do I sleep? Or should I go sit in the recliner by her bed, just in case? I'm only three or four yards from her doorway right now, so I know I could hear her if need be. But what if she passes in her sleep, rather quietly? I guess there's nothing that I could do anyway, if that's the case...right? Or is there?

I'll let you know in the morning what I chose to do. For now, I am putting this laptop down. Thanks for hearing me out, y'all...and I'm sorry it didn't come sooner. Maybe I'll play catch up in the next few days, if I can.

"Night Light" by Janice Lynch

2010-04-08T14:35:00.000-07:00

"Night Light"

When I was a preschooler and afraid of the dark, my grandmother, in whose house my family lived, would leave an M&M trail from my bed to hers. I would set forth through the dark house for the night light of her room. Once I'd eaten one M&M, I could find the courage to search for all of them.

My presence in her room always woke her. She would say, "Hello, doll. Dark getting to you?" Then she'd turn back the blankets to make room for me. It was many years before I believed, as my grandmother often said, that there was nothing in the dark that did not exist in the light.

Thirty years later, when a doctor told my grandmother she had widespread kidney cancer, we found ourselves in a different dark. My mind played with the terrible anticipation of her absence, the way your tongue cannot avoid exploring the pain of a fever sore. I wanted to become some sort of light for Grandmom, to blaze a trail from the dark room of her illness, fear, and pain to the light of my love and the love of our family.

But as the days wore on and cancer took her life piecemeal, I clung to what little we could still share. I held her hand and stroked her head. In those last weeks, I sang for her: hymns, spirituals, Irish drinking songs, sea chanteys, "Amazing Grace," and "Lord of the Dance." When I tired of singing, I read aloud: trashy novels, magazine articles, newspaper stories, reports I was writing. The content was meaningless, but my voice calmed her.

During the last two weeks of her life, she taught me to pray the rosary, a ritual I had somehow missed, despite years of Sunday school and church. To her, the rosary was a daily obligation. To me, it was an odd and time-consuming task from an archaic world. She could no longer recite the entire litany aloud and could not keep count of the prayers she had said. She wanted someone to pray it for her. I volunteered. The rosary connected her to her faith and to the past, her parents, her brothers and sisters.

Praying with her as she lay dying became a way to connect and comfort us. I had to concentrate to say each of the prayers on each of the beads, moving them through my grandmother's sore fingers. I could think of nothing else. When we began to pray, it was usually in the midst of her pain and my fear. But by the time we had come full circle, she would be asleep and peaceful, and I would have forgotten, for a while at least, how awful things were.

On the last day of my grandmother's life, she lay in pain in a hospital bed. I could not see the world without her in it, yet I could not bear the world that kept her now. I wanted to say something to release her, and so began to whisper names. I named my sisters and brother, my cousins, my grandmother's siblings; I named streets we had lived on, countries where she had traveled. I whispered and prayed that her tight grip on this life could be loosened by memories of how much she had loved this life, and how well she was loved.

She began to grow calmer later that evening. A priest suggested we play a tape of Gregorian chants for her, and the music stilled her. I went home. My mother and sister were just falling to sleep in her room when she stirred for a moment, sighed, and was gone. As I drove back to the hospital that night, my loss was as overwhelming as the darkness had been 30 years earlier, on my M&M trail to safety. I made that late-night drive to the hospital because I so desperately needed to see my grandmother at peace; it was her turn, again, to guide me through the night, to teach me to walk without fear into the hard moments of this life. I held her rosary beads in my hand and let them rattle against the steering wheel.

-- Janice Lynch

Meet Ms. J/The Situation of the Lovely Ms. J...In Print

2010-04-05T21:42:00.000-07:00

Hi folks. I had the opportunity to write a "Meet My Grandmother" article for the local paper here. I've changed names to protect the innocent, as we do around these parts...gotta retain that anonymity, of course. I'm glad I did it, since I had wanted to finish my bio of Ms. J and had thus far failed to do so.

So, here it is.

Meet My Grandmother
by Miss R

  I received a letter recently from an uncle on my mother's side of the family. He offered up advice and encouragement on my current situation, caring for my disabled grandmother. She is my father's mother, thus not a blood relative of this particular uncle. However, he knew her fairly well and was able to describe her to a "T." He used three words in his portrayal of her: conservative, self-reliant and stubborn.   

How accurate.  

"Conservative" does indeed describe Ms. J (aka, "Gram"), but only in part. Conservative in political beliefs perhaps, though there is so much more to her than her voter registration card. For instance, my grandmother was "green" before such a term was ever in vogue. Whether it was due to living through the Depression or because of her Scottish roots, I am unsure. (Apparently I am descended from one of the thriftiest nationalities ever to exist.) I also owe my feminist views to my Grandma, though she'd never admit to having anything to do with that dreaded "F-word." Whether she likes it or not, she taught me that as a woman, nothing should hold you back. She was as rough and tumble as any of the ranch hands she knew, and was always the one to tackle home-improvement projects with the gusto of a dog attacking a small animal. Yet, she always had a warm meal ready for "the men" when they came home from a day's work in the field. (I wouldn't be surprised if she was also out in the field with them and was somehow cooking dinner at the same time.) 

This brings me to the second adjective my uncle used: "self-reliant." She would always see the home-improvement projects through until they were completely finished, and to her satisfaction. There was no waiting around for anyone. In the spring of the year, when I was a kid, she and my mother would load up my cousins and me and head for the Cabin to fix leaks and cracks in the waterline that formed over the winter. It may not sound like much, but if you understood that a mountain spring was at one end, the Cabin at the other, and how many feet of pvc tubing was in between (a lot), you'd understand what an undertaking that was. Or, if that doesn't illustrate my point, maybe the phrase "let's just take out that wall" does. I think that was her favorite phrase. Family members practically had to hide the crowbar and other [de]construction implements from her, lest we all be drug in to yet another project. I'm pretty sure I grumbled and groaned about this as a kid, or hid in corners or something. Now that I'm in my twenties and have the gift of perfect hindsight, I can see just how admirable her attitude was. 

That leaves us with the third word: Stubborn. I recently read a blog that described living in rural Montana as being a lot like being duct-taped inside a refrigerator box with a bear. Well, telling Grandma she was wrong about something might also be described that way. You took your survival into your own hands. Again, this trait is usually blamed on our Scottish heritage. Supposedly the Scots are known to be bull-headed and bellicose. At least, that's the rumor.  

In any case, those three words do describe Gram pretty well. However, many others do too, such as hospitable, talented, outgoing, and adventurous. A few words about her life history will help illustrate my point.

"-----", as she was christened, was born to Christina and Benjamin J. on August 9th, 1922. The family lived in Springdale Montana at the time, as her father worked with the Yellowstone Park Company. A few years later the family moved to Chestnut Valley where she was raised from then on. She had two older sisters, Ms. M and Ms. N, and a younger brother B. Many memorable stories have been told about this time period. For instance, her mother worked as a switchboard operator, and wore roller-skates at work each day in order to make the fastest connections she could. Also, her paternal grandfather employed Charlie Russell as a chore-boy.

She grew up riding horses every day, usually bareback and regardless of the weather. These were the years of the Great Depression, and Gram would always share with us the various ways she and her family saved money and helped out those who were less fortunate than themselves. As I've mentioned, she always taught us to "waste not, want not" and had many creative ways to reuse or recycle everything under the sun. Nothing was ever thrown away unless it was absolutely necessary. No, if it could be washed and reused, it would be. This included plastic plates, cups, and yes, Ziplock bags.   In the winter of 1940, Ms. J married the love of her life, Mr. J. They met on her family's ranch, where he worked as a ranch hand for several years before they started courting. After their marriage, the two moved to a house in Dodge, which was built by Mr. J's uncle. Gram lives in that very same house today. In 1955, Mr. and Ms J began an outfitting business on the south fork of Stickney Creek. The building was originally homesteaded by Mr. J's father, who was a prominent lawyer. The lodge, known to most as "The Cabin" grew over the years to become quite successful. Many seasons of hunting brought the family life-long friendships, including one with Apollo 13 astronaut Jim Lovell. The outfitting [business] specializes primarily in elk and mule deer hunting, though a few people--myself included--enjoy fishing Stickney Creek for mouthwatering Brook trout. 

Ms. and Mr. J had three children, M. in 1941, R. 1945, and S. in 1951. Nothing meant more to Gram than her kids and the grandchildren they gave her. I was only one of many children that she helped raise throughout the years--her house was the go-to place for her kids, her kid's kids, and other people's kids. Everyone knew that Ms. J's house was the place to be. There was always yummy food on the table and a warm bed for anyone who needed or wanted it. Plus, she always had a way of making you feel special.

  Ms. J also had quite the adventurous side. She had ridden since she was a small child, and ordinarily thought nothing of getting thrown off a horse. Somewhere around 1970, she was bucked off one of her ranch horses and landed on her neck. As a result, she needed surgery and had her spine fused back together. It was pretty serious business, but it always was that way with Gram. She has had many surgeries through the years due to her active lifestyle. Somehow she was able to balance her wild side with proper manners, classy style and superb taste. (I should probably add "shopping at Kitsons" to her list of favorite hobbies.) 

The eighties proved to be trying times. In 1989, after almost a year of treatment, Ms. J's beloved husband passed away in Spokane, Washington. His death was devastating to her and to the rest of the family. Ms. J kept on outfitting with the help of her sons and other family members. She also continued to run the "Star" mail route up Adel and Mission, which she did for 30-odd years. I recall coming home from school one day to find out that a pickup truck had backed over Gram's leg as she was on her way to deliver mail. What did she do? Went down to the post office anyway and started sorting the mail--fully intending to run the route! It wasn't until the postmaster pointed to the blood running down her leg did she agree that, yes, she supposed that seeing a doctor might in fact be a good idea. Stubborn, indeed.

Gram is also very talented and outgoing. She was an active member of Eastern Star and Daughters of the Nile, and because of her rich knowledge of the Dodge area, frequently added to Mountains and Meadows. She also belonged to Women's Club, was a lifetime member of the Methodist Church, and taught Sunday School. Ms. J also had a beautiful voice, regularly sang in choirs, and could play music by ear. (A talent I certainly did not inherit.)

Ms. J was once given an award for "Best Hunting Camp Cook" by some of the hunting lodge's patrons. She enjoyed cooking even outside of the Cabin, and made fabulous wedding and birthday cakes. She always made the most scrumptious treats for every holiday, such as Bunny Rolls for Easter, popcorn balls at Christmas, corned beef and cabbage on St. Patty's Day, etc. Truly, feeding people probably counts as one of her favorite things to do. Since she's been disabled, it's been very hard on her to not be the one to cook for her guests. Since it then falls to me, I find myself nervous that I won't be able to fill her shoes, even if I did have the best teacher imaginable.

A further example of her outgoing nature is her ability to make friends. She would chat with people while standing in line at the DMV and recognize them five years later when she ran into them in the grocery aisle of Sam's Club. Her outgoing nature and attention to detail meant that she never forgot a face...or a story. Story-telling, one of her other talents, was one that produced the most memorable childhood moments. On her way to work, my mother would leave me at my grandparent's house in Dodge, and I would cuddle in bed with Gram. She would tell me story after story about flower fairies, moonbeams, and silly stories about hiding under the bed amongst "fuzz balls."

Over the last ten years, Gram has survived strokes and a broken hip. Her health has been in steep decline over the last year, and the doctors tell us that she doesn't have much longer to live. This news saddens all of us, and all of the family has rallied around to visit. This article has given me the chance to tell the community about my loving grandmother at a time when I most needed to share all that she has done for me and for others. She spends her days relaxing and watching some of her favorite shows, and we make sure that she laughs loudly and often. Her memory is as keen as ever and her sense of humor just as riotous. 

Each of us might boast that we have the grandma that baked the best pie crust, made the best spaghetti sauce, or gave the best hugs. However, I would venture a guess that Ms. J could easily be in the running as one of the toughest grannies ever to grace Montana soil. Somehow, through all of it, she remained a pretty classy lady who taught me and many others valuable lessons. (And also how to bake the best pie crust, make the best spaghetti sauce, and give the best hugs.)

Easter...We Made It To Another Holiday...

2010-04-05T00:09:00.000-07:00

I truly didn't think that Ms. J was going to make it to this weekend. I really didn't...not with how poorly she was doing last week. I blogged about it over at Caregiving.com, but in a nutshell, here's what happened.

On March 26th, Gram Cheyne-stoked on one of the caregivers. Her heart actually stopped. This went on for about 45 minutes. The caregiver said she had never seen that happen without the person dying. She's had a lot of experience with Hospice, rest-homes, etc. So yeah...it was a big deal. So, I flew back early from the brief trip I took home (for a roommate's wedding) because I was afraid it was the end. When I got here, she was bed-bound and slept straight through 3 days or so. We barely got any liquid or nourishment down her and the nurse told us that we probably just had days before she passed.

I am too tired at the moment to recount everything that has happened since. All the family rallied around and she got to say her goodbyes. Then....she perked up a little and is now better. She declined after the episode of course, and is even more care now than before. However, she's still hanging in there. She was fussing tonight, so I know things are fairly back to normal.

So, I made Easter for this Saturday. We had a big potluck, I made a kick-ass turkey, and Gram seemed to have fun. I made us a basket full of goodies, but I had showed it to her Thursday...you know, just in case she wasn't with us by the weekend. God. It sounds so weird to write that.

I got her a copy of A Little Princess and The Secret Garden, the requisite chocolate rabbit, some licorice tea, some magazines, different fun candies, candles, and honey sticks...among some other random stuff. I can't NOT have Easter baskets. Please. I live for holidays and all that goes with 'em.

I'll write some more tomorrow. I am too exhausted to do much else at the moment.

Waiting for Living Our Dying...

2010-03-28T14:56:00.000-07:00

I just ordered my new copy of Joseph Sharp's book...the one I keep talking to you all about. I think I may need to rely on it now more than ever before. Hope it comes soon.

Have to share this...

2010-03-27T14:26:00.000-07:00

This is a poem that was featured on Desperate Housewives, Season Four. Maybe you remember this gem as Karen McCluskey's tribute to Ida Greenberg:

Do not stand at my grave and weep,
I am not there, I do not sleep.

I am a thousand winds that blow,
I am the softly falling snow.
I am the gentle showers of rain,
I am the fields of ripening grain.

I am in the morning hush,
I am in the graceful rush
Of beautiful birds in circling flight.
I am in the starshine of the night.

I am in the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am in everything.

Do not stand at my grave & cry,
I am not there, I did not die.

Mary E Frye, 1932

Limited Time

2010-03-27T12:17:00.000-07:00

I left for a few days to attend a wedding last week, during which time, Ms. J took a turn for the worst. She is currently bed-ridden, because each time we move her, she cheyne-stokes and her heart stops. (!)

So...we are now to the point of check-and-change with the Depends, and move her only so her bedsores heal up.

She just asked us to wash her hair, though...so she's still in there, all right.:)

The nurse just came to visit and thinks that we only have days. I guess the Doc may have been right when she said that we had two months, back in February. I sure don't know. I guess Ms. J is holding on for something or to something and isn't ready just yet. Was it for me to come back? For Dad to come home? He'll be back tonight, so we'll see.

Please keep her and the family in your thoughts and prayers.

Required Watching #1

2010-03-14T15:13:00.000-07:00

The Fountain

This is my favorite movie, really. Conveniently for my blog, it also deals with some weighty subjects. However, unlike most movies, The Fountain has without a doubt the most intense visual account of death--from the dying person's perspective--that I have ever seen. I couldn't even attempt to do it justice, so go rent it already.

Seriously, though...there's something about this movie. I sincerely feel, from the bottom of my heart, that there is truth within it. Every time I see it, my heart leaps up into my throat and I swear I'm on the verge of having a religious experience. I feel, every time, like I'm witnessing something Real. At first I thought it was just an emotional response to the beauty of it all, but something inside me really believes that death is actually like what is portrayed in this movie.

And it's distressingly beautiful.

It may confuse and confound you because it's very open-ended and nonlinear, but it's worth it. It can be taken many different ways and it may mean something else to you than it did to me...it's very much open to interpretation. Rachel Weiz and Hugh Jackman are at the top of their game, too. Darren Aronofsky (Pi, Requiem For A Dream, The Wrestler) directs...and...does an amazing job.

Also, it does a very good job dealing with how most people deny death and treat it as a disease, something to be cured. My father is very much that way, so its account of that denial hits close to home.

Miss R Featured on BlogTalk Radio via Caregiving.com

2010-03-14T13:42:00.000-07:00

Hi all...I did an interview with Denise Brown over at Caregiving.com this afternoon. Go take a listen if you're bored and don't already know my and Ms. J's story.

It went pretty well, even though I was all nervous and sweaty and caffeinated. (I'm much better in writing.) But, I seem coherent, so...great! There was a caller who swore on air, but hey...keeps things interesting.

To find the interview, visit Caregiving.com, head to the right column, and find the BlogTalk Radio player. I'm on the March 14th episode of Table Talk.

There were a few things I didn't get to hit on that I had wanted to, but I will post on that later today. One of them was "hopes and dreams for the future." I hope to get to that one today because I'm pretty excited about it.

Thanks to Denise for making me feel so comfortable and for all her encouraging words!!!

Required Reading #1

2010-03-12T13:22:00.000-08:00

I've been meaning to post on this for a while, but haven't because I feel like I need a full, formal article to do the subject justice. However, I will probably never be satisfied with anything I write, so I might as just write something.

Caregiving is hard. Dealing with death and dying is harder. How best to handle these challenges? Personally, I find refuge and solace in reading about other people's experiences. I've been fortunate to come across a few books that have helped me immensely, and I heartily recommend them to you.

I am planning to do some mini-reviews on the books I've found the most helpful, so look for those in posts to come. For now, I'm going to be lazy and provide a list. Also, I'm always on the lookout for new books that might help us on our caregiving journey, so if you know of any, please contact me.

Anyway, here's a list of the few I've had the most luck with thus far:

1. Tuesdays With Morrie: An Old Man, A Young Man, and Life's Greatest Lesson
I'm sure this book has been on every single required reading list ever written. There's a reason. It's amazing.

2. Living Our Dying
Written by Joseph Sharp, a hospital chaplain who was diagnosed with AIDs. This book is almost a how-to manual for dealing with terminal illness, death, and the dying process. It is truly a must-have, but it isn't exactly fun or light. Sharp includes mindfulness exercises that include imagining your own death...in detail. Sounds scary, but it is enlightening beyond words.

3. Heartbreaking Work of Staggering Genius
An unorthodox selection, perhaps...and one I read a long time ago. Stilll, I've been thinking about it so much lately that I think it's worth including.

4. The Pharmacist's Mate
Recommended a few years ago by a friend, I finally got around to reading it not long ago. I am very glad I did. The author writes about her experience with the death of her father...and about her experience with artificial insemination. Life, birth, family, guns...it's all here.

5. Chicken Soup for the Caregiver's Soul
It should be pretty obvious why this is included. I don't care how sappy it sounds. This book is a necessity for every caregiver's library.

Sleepy Time...

2010-03-10T20:31:00.001-08:00

Ms. J has started sleeping in the evening, something she has never done. It usually happens after a day of visits and phone calls, which tire her out. It sounded like today was a very mild day, yet still she is sleeping right through the end of Amelia. (Which, by the way, is a movie I recommend.)

I think I should try harder to wake her up, but she doesn't really respond when she gets like this. Unless I am putting her on the toilet, in which case she becomes wide awake and can't even think about sleeping. (A good thing, I think.)

So, let her sleep and relax since she is clearly tired...or wake her up so she will actually sleep tonight and not keep us both up past 2am...

Anyone? Yeah, I don't know either.

I think I will try and get her ready for bed in her chair...the SoniCare toothbrush always wakes her up, for one. That way I can get her ready for bed and also wake her up a little so she'll be tired for her actual bedtime....which, I just realized, it almost IS.

Are You Okay?

2010-02-18T13:44:00.001-08:00

The doctor's words are still ringing in my ears. She doesn't have much time left. We need to prepare for her dying comfortably, with dignity, at home. Her body is wearing out. Pneumonia could take her. Her heart might just stop beating. She is tired.

I pushed her wheelchair through the hallway at the clinic, feeling hollow at the idea of planning her funeral...possibly in just a few short months.

We stopped in the waiting area and I saw her reflection in the mirrored wall. She was bundled in several layers of clothes. Mittens. That enormous fur hat. Those big dark glasses, worn to keep out the glare of the snow. Her face was gaunt and pale. Her body was leaning off to the right. She was motioning for something. I couldn't understand what.

To be taken across the room, away from the draft of the door.

"Are you okay?" Friends and family ask. You've invested so much.

No, I am not. I don't think so. But maybe I am. I don't actually know.

How would I know?

I assume that because I am only crying non-stop that I must be at least somewhat okay, since that seems like a reasonable response to the news that a loved one may only have a few months left to live. If I was rolling around on the ground or trying to light myself on fire, I would know that I was definitely NOT okay. Those are not reasonable responses to this news, to this circumstance. However, I still don't feel "okay."

I am sad. Very, very sad. I feel like my heart is breaking. It isn't even that I am unable to say goodbye. I just don't want to. I still want her in my life. I wanted her to be at my wedding, I wanted her to see my children. (Even though she'd have to wait about ten years.)

I know these things aren't realistic. I have been by her side for most of this last year. I know what the reality is. I know she is declining steadily and has been for a long time. I see how tired she is, how hard it is to get a sentence out. I see that each word is formed with maximum effort and how each breath is so shallow...

I see it. But I don't want to say goodbye. Not yet.

I know that I have a religion. I love my religion. I believe in it...but I have no idea what happens when we die and it scares me that I don't know what to tell her. I have clung to the belief over the past few years, that no matter what happens to us, whatever it is, is not bad. I do believe that there is a force in the universe, something that we must return to after we pass. Do we see our dead relatives? I have no idea. I'd like to hope so, since I certainly like the idea. If it doesn't happen that way, I don't think I particularly mind that, either. (Though it does take a little bit of detachment to be okay with that idea.)

Of course, I can't say any of this to her. Even though I hate the movie and everything it stands for, Ricky Gervais' Invention of Lying may be half-right. In the movie, he tells his dying mother that she'll see all those loved ones that passed on before her. It is presented as a lie that he tells her to assuage her fear of death. Perhaps that IS what it is. Maybe it isn't. I really don't know. All I do know is that whatever happens is not bad. It can't be. I've experienced enough myself to know, to really feel, that something happens. We reunite with the force that made us or we get reincarnated in some fashion or we walk around in a bliss of our own making...I have no idea.

Even with these feelings, I am still scared and I don't want her to leave me. I want her to be a part of my life for just even a few years more. See me get married, Gramma...see my children...please...

I know these things may not happen. I just always thought they would. Gram was such a FORCE...such a part of everyone's life. She raised her kids, other people's kids...saw them grow up and then raised those kids' kids, too. Can I have here there for my life events, too?

Maybe I want her there because I know how much she'd like to be there, herself. However, she is...so...tired. She may even be ready to let go. Do I want to ask her to hold on just to make me happy? Death is another part of life, I think...there is something holy there, something I don't understand fully. I can't ask her to stay around because I want her here. She needs to go at her time, when she is ready.

I sigh. None of this makes me feel better. That's not the point.

Am I okay? I have no idea.

Chaplain Coming Today

2010-02-17T11:58:00.000-08:00

So, Palliative Care has agreed to send their Chaplain out to visit with Gram today. We'll see how it goes. I don't want her to feel like it's her last rites or something, but I really feel like she needs some spiritual guidance.

I've been toying with the idea of doing devotionals with her, but I find myself almost embarrassed to do so. I don't know why this is. Perhaps because I don't feel like a religious/spiritual authority or leader AT ALL. I fail and flail just as much as the next girl and feel so odd leading any kind of prayer or study. Plus, it's sort of a sensitive subject...how do you approach something as important as religion to someone who is in the last stages of their life. I have no idea. I can feel my face redden as I even think about it.

Maybe I just need to get over myself and DO it. It isn't about me, after all...

Meltdown

2010-01-29T22:19:00.000-08:00

I had a meltdown tonight. I've been having a hard time over the last few weeks, especially. Tonight, I finally just went into the back bedroom and bawled and bawled. Not just an "I feel sorry for myself" kind, but the wretched, painful, grieving, wracked-with-guilt kind.

I've been snippy and irritable for weeks. I don't know when I am going home, the people around me are super-negative and annoying, I have no idea where my life is going, my skin is erupting into cystic acne, I am gaining weight, am very depressed, and to top it off, I can't understand anything my grandmother says to me. Last night, after asking her to repeat herself six times, she screwed up her face and started to cry, mouthing "I am a burden, I am a burden. I hate being such a burden."

I didn't flip out then. I just added that to my Guilty Pile and thought to myself, well...this IS a burden. SHE isn't, but this situation is. Then tonight, as I sat by her, half-watching The Golden Girls, she kept trying to say things that I couldn't understand. Each time, I'd have to mute the TV and have her repeat herself four or five times. My irritation kept building and building, until finally, after about fifteen attempts, I snapped at her saying, "GRAMMA! I CANNOT UNDERSTAND YOU!!!!"

I ran to the back bedroom and cried and cried and cried. It felt like my heart was breaking...it was one of those. I feel better now, but just barely. I wish I knew what I was doing, when I could go home. I wish my family would be supportive and stop leaving everything to me. Above all else, I wished I wasn't such a terrible, awful person...the kind of person who would yell at her grandmother. I wanted to just die.

It was bad. It was. However, those kind of cries are not something to be avoided. To me, they seem like a volcano erupting, releasing the built up pressure building beneath the surface. Tonight, after I got her into bed, I gave Ms. J a real hug and told her I loved her. I meant it. I always mean it, but some nights you just FEEL it. Really, really feel it. Tonight was one of those. I'm glad, because she needed it, I think. I needed it, too.

She needs to know how much I love her, even though this situation is getting to me.

The Age Of Invisibility by Eissa Stein

2010-01-23T21:58:00.000-08:00

Reposted from here.

A couple of weeks ago, as I walked past my favorite coffee shop, I noticed a woman sitting on the bench outside, holding an ice pack to her leg, muttering to herself. Bleeding. Nodding her head and rocking back and forth slowly. The blood had soaked through the cloth she was holding and was now dripping slowly down her leg, seeping beneath her torn, beige stockings. No one stopped. No one noticed. Or, perhaps if they had, they didn't acknowledge. The street was busy and everyone kept moving.

What I could have added, that would explain the solitude, the invisibility, the not being seen when plainly there, was that she was little and old. A bleeding little old woman, all alone on that bench, blood trickling into her orthopedic shoe. I stopped to ask what happened. A couple men, sort of hovering but not quite attached, said she tore her leg open on her metal shopping cart, loaded to the top with assorted bags. Looking, I saw a ragged screw exposed, shin height. They saw her stumble, got her ice, and weren't sure what to do next. She rocked, her lips moving, but didn't answer when I asked how she was. I knelt down by her feet, got in her face and asked, loudly, if she was okay. She snapped out of her reverie and answered yes, she would be fine, she was just waiting for the bleeding to stop. I asked if she wanted to go to the doctor, the emergency room, if there was anyone I could call.

No thank you, she said.

She had no one.

She was all alone.

She was heading to Waverly, which was about 5 blocks south of where we were. She was 100 years old. She lived by herself.

I checked her leg--the bleeding appeared to have stopped. I had her stand and walk a few steps, to make sure it wouldn't start again, gave her instructions to go home, wash the wound, carefully taking her stockings off, and put her leg up for the rest of the day. One of the bystanders offered to walk her there. I watched them move off slowly, her bent over, him twice her size and than ran around the corner to pick Jack up at school.

As I was pushed along by the crowds of moms, sitters, and strollers, I couldn't get this woman out of my mind. Here we were, lavishing time and attention, snacks and playdates, open hearts and attentive ears on these little beings, yet someone at the other end of the spectrum was completely alone. Did she have kids? Had she been married? Did she grow up in this neighborhood? Did she have to walk up 5 flights of stairs with that cart? What did she do when she was sick? Was there anyone at all to check on her? Would she be okay?

I remember Jack bleeding on the street once, as we ran to the emergency room. Everyone stopping to look, asking if they could help. People in NYC are far more kind and generous than we get credit for. But, in that moment, I saw, I recognized, I knew, not for the elderly. Not here. Not anywhere, really. As people get older, as their looks, their jobs, their friends slip away, they lose their power. Their resonance. Their importance. And after awhile, we don't see them.

Perhaps that's one of the reasons we fear aging and fight so hard to keep it at bay. We don't want to be the elderly man checking for the perfect pineapple in the supermarket, but not knowing how, as his wife used to do all the shopping. The widow in the laundry room whose husband died 3 months ago and now has only herself to do laundry for. The woman bleeding on the street, with no one to turn to for help.

We don't want to acknowledge that they could be us one day.

Whew. If only we could all go out into the world with a little more time and compassion for those who don't have what we do. I'm carrying that thought through the holidays. And into 2010.

Caregiving by Gloria Barsamian

2010-01-23T21:44:00.000-08:00

Via Huff Post, again. I found a goldmine over there!

Caregiving

Eventually, all of us will end up in a caregiving or care-receiving situation. Apprehension is understandable. But how do we balance our own families, careers, and retirement dreams with the demands of caregiving? How will the emotional toll affect our families and ourselves? Typically families do not address these complex issues until the crisis is upon them -- and before you know it strong feelings such as anger, anxiety, and helplessness can overwhelm you. When you find yourself caregiving for a loved one, not only you, as the caregiver, become stressed. Family members also need more support.

In the early stages of caregiving there are so many decisions to be made. Often people try to avoid stress and become isolated from their friends. During caregiving all of us need a network of people to support us. Caregiving will create many changes in your life and it is very important to take time out for yourself. Go to the gym, walk, join a group like Caregivers.com. The most important thing is to take care of yourself and know when to ask for help.

Caregiving puts us under great strain -- and when we are under strain, we are more apt to lose our temper and become irritable. The caregivers I worked with reported having periods of forgetfulness, withdrawal from friends and partners, and childish patterns of thinking.

We cannot avoid stress or eliminate it altogether, and for that matter some stress is good. But we can recognize that often our own thoughts are the very things that lead to stress during caretaking. After all, if your father is home with help and support and you get a call from him, he may just want to talk to you. Until you determine what his need is at that particular moment, don't panic.

Though caregiving is a multifaceted challenge, it can also offer profound emotional and psychological rewards. With the right perspective, caregiving for a loved one need not be associated with unalloyed dread and anxiety. The key lies in going beyond these anxieties related to caregiving. This means that you must start talking to your loved ones before a crisis arises. Ask them what they want. Share with them your concerns and then they may share theirs. These kinds of early discussions are very helpful in the long run.

Every age group develops mutual responsibilities with each other. Human nature seeks this type of fulfillment, and we as people change all the time in order to feel satisfaction and fulfillment. When we do not feel this sense of transcendence or satisfaction we feel empty. All of us search for transcendence. At some point in time all of us will face the difficulties of providing care for a family member or spouse. Caregiving is a social issue. In caregiving for another who has lived and loved and suffered, there is something that happens so that one extends beyond oneself, which often creates a sense of unity. This happens regardless if one is caring for a child, a parent, or a friend. Intergenerational caregiving will be common in the twenty-first century. Caregivers may feel burdened by their responsibly for unpaid care work. However, they will simultaneously feel enriched by their efforts to promote family relationships.

Our children will simply continue to choose those patterns of caretaking that they experience in the family, either when the deep relationship in caretaking brings satisfaction, or, when this cannot be attained, a feeling of emptiness and dissatisfaction. Despite what society declares, the job of caring for a loved one who is ailing is daunting. Often overwhelmed, overworked, and untrained for the job of caregiving, we feel scared. It is not a storm for some caregivers -- it is a hurricane.

Relative to all other intergeneration pairings in caregiving, the mother and daughter tie, especially for those over 50 years of age, can be the closest. These mothers and daughters have been balancing lives for a long time. Both mothers and daughters have ambitions and needs of their own. People studying mother-and-daughter relationships have shown that in later life both mother and daughter foster their own autonomy. However many do experience conflict and tension. So the truth is that this relationship is one of support and struggle. Caregiving highlights these tensions.

First we are children to our parents, then parents to our children, then parents to our parents, then children to our children. -Milton Greenblatt, M.

2010-01-23T21:37:00.000-08:00

I found this nice article while searching around the Huffington Post.

Just Listen - Maybe Someday is Now

In 1972 while attending medical school, I was working part time doing EKG's at a Jewish Home for the Aged in Jamaica Plains, Massachusetts. It was a clean and nice facility, but like most of its kind, a "waiting station" before people died. So many of the halls were filled with the infirm elderly in wheel chairs, just staring. It was a very depressing sight for someone my age, with much of my life ahead of me.

On one day I came into the room of Mr. Cohen, a spry, energetic and very much alive man in his eighties. He was such a stark contrast to the rest of the residents there, that I said to him: "You seem so full of energy and so full of life. Why are you living here?"

He replied, "I want to live here."

His response seemed incredulous to me and I responded with: "I don't get it. Why would someone like you want to live in a place like this?"

He looked at me and said, "Pull up a chair" and proceeded to try to teach me a lesson about life.

"Nearly seventy years ago, my wife and I escaped the Russia. I can't count the number of times she saved my life and I saved hers. We moved to Boston and I had a good job owning a tailor shop and we raised a great family, but they have their lives with their children. And since I am really okay, I tell them they don't have to go out of their way to visit since I am fine and I am helping their mom," he explained.

"I understand, but I still don't get why you're here," I interrupted.

"Don't be so impatient," he replied, "I'm getting to my point. Five years ago, my beloved Goldie had a massive stroke and she lives in a room two floors above where we are standing. She doesn't speak. Some days she smiles at me when I come in and I like to believe it's because she recognizes me, but I'm probably kidding myself."

"I understand, and I have to be going to my next patient, but I still don't get it. You could visit her and live elsewhere and not live in such a -- if you'll pardon the expression, rather sad -- place," I said rather un-empathically.

"You don't seem to understand," Mr. Cohen explained, "every day I get up, take a shower, get dressed and go to Goldie's room where I clean up the urine she is sometimes laying in, bathe her, change the diaper she wears, dress her and braid her hair the way it was in the old country. Then I sit and read my Jewish newspaper."

"That's very loving, but you could could still live elsewhere and do that," I replied.

"Doctor," he said emphatically, "I like being here, because every day I get to give my Goldie dignity."

"That's wonderful, but you could still live elsewhere," I said, continuing to be puzzled and heading for the door to see my next patient.

Just before I left, Mr. Cohen had a final comment to make. "Doctor, I do it, because she would do it for me. Maybe someday you will get it."

Last week I visited my mom who is living in a place like Mr. Cohen's and whose memory is slipping and last week I started to cut her food.

Maybe someday is now.

First we are children to our parents,
then parents to our children,
then parents to our parents,
then children to our children.
-Milton Greenblatt, M.D.
as quoted in Get Out of Your Own Way
by Mark Goulston, M.D. and Philip Goldberg

Desperate Housewives Tackles The Subject of Caregiving, pt. 2

2010-01-23T16:49:00.000-08:00

A clip from earlier in the episode.

Desperate Housewives Tackles The Subject of Caregiving

2010-01-23T16:44:00.000-08:00

Orson delivers a pretty good speech on the frustration he feels about being newly disabled.

More on this later.

Martha Writes About The Elderly

2010-01-23T16:39:00.000-08:00

It's a bit generic, but interesting nonetheless. Also copied and pasted below:

The Other Health Care Crisis -- America's Elderly

As the health care bill winds its way through Congress, sparking passions, heated debate and countless news stories, I have been struck by the dearth of discussion about a looming health care crisis: In 2011, the first of 78 million baby boomers will start turning 65. We, as a nation, are utterly unprepared for this rapidly approaching "silver tsunami." We do not have enough doctors skilled in the care of the very demographic group with the greatest overall health care needs. And we do not provide proper support for the more than 48 million men and women who, according to a recent report from the National Alliance for Caregiving, are caring for older family members and friends.

Our population is growing older and living longer. Life expectancy in the United States is at an all-time high of nearly 78 years. The oldest old, those who are age 85 and over, are the fastest growing segment of the population. Yet very few doctors are trained in the care of the elderly. Do you know that there is currently one geriatrician to every 10,000 baby boomers? There are about three times as many cosmetic surgeons, a fact that speaks volumes about how we view aging in this country.

With the increase in the elderly population comes a concomitant increase in informal caregivers. Because around-the-clock home care runs as high as $150,000 per year (not including rent or food) and, depending on where you live, residence in an assisted living facility can easily cost $4,000 per month (none of which is covered by Medicare), more than 75 percent of Americans receiving long-term care rely solely on family and friends to provide assistance. The vast majority of these caregivers are women, most of whom devote an average of 19 hours a week to their caregiving role, often while also holding down a paying job. Many are caring for young children and their aging parents at the same time. And many more, surveys show, have used all of their savings or cut back on their own health care spending in order to cover the cost of caregiving for their relative.

I come to these issues as the daughter of a woman who lived to the age of 93. My mother remained actively engaged in life and healthy nearly to the end. Still, we came to know first-hand some of the issues that need to be managed and the constant worry that shadows every day. What if she falls? What if she takes her medicine twice or, as was more likely with my mother, what if she decides not to take them at all?

My family's experience opened my eyes to the challenges facing countless Americans and their families, and inspired me to found the Martha Stewart Center for Living at the Mt. Sinai Medical Center in New York City. At the Center, which is dedicated to my mother, our mission is to help people live longer, healthier, productive lives even as they grow older. We also aim to develop new models of care for people over the age of 65 that will help our country and the world better meet the healthcare demands of an aging population.

There is an urgent need for innovative ideas and new paradigms -- and no quick fixes. But there are steps we can and should take. First, we must recognize that older adults are an idiosyncratic population with a broad spectrum of needs from the frail and fading Alzheimer's patient to the physically and mentally active senior like, for example, Clint Eastwood who at age 79 is arguably at the height of his creative powers. And we must educate doctors--whether or not they are geriatricians--so they can better understand and serve this demographic. At Mt. Sinai, every medical student is required to do at least some of their training at the Center for Living. No matter what specialty of medicine these doctors ultimately choose, they will be better prepared to work with our rapidly aging population.

Passage of the C.L.A.S.S. Act, a national long-term care insurance program that is currently part of both the House and Senate health care bills, could also make a difference. Introduced by the late Senator Edward M. Kennedy, the C.L.A.S.S. Act (short for Community Living Assistance Services and Support) would allow people to purchase long-term care insurance through payroll deductions and to receive cash to pay for home care, adult day programs, assisted living or nursing homes. The program's fiscal soundness has come under fire from certain quarters. There's no question that new legislation must be well-designed and viable over the long term, but, at the same time, we must not lose sight of a pressing need for solutions that will offer older adults and their families some financial protection.

We're all in this together. Whether or not you care about older people, you will, if you're lucky, be one of them. It's not just a demographic. It's personal -- it's you, your parents, your aunts, uncles, friends and children. We need to do a better job caring for this population -- and supporting those who care for them.

Martha Stewart is the founder of the Martha Stewart Center for Living at Mt. Sinai and Martha Stewart Living Omnimedia, Inc.

Swallow Evaluation...Barium-Style

2010-01-22T19:28:00.000-08:00

Ms. J suddenly can't swallow. I don't know what is going on, but we fear that she has had another stroke. We took her to her doctor this week, and a swallow test was prescribed for two days later. It did not go well.

For one, she couldn't swallow the barium.

Two, the male lab tech was a jerk. He asked Ms. L (one of Ms. J's caregivers who had accompanied her that day) "Is she ALWAYS like this?" in a scathing tone, right in front of Ms. J. You don't SAY things like that to a patient, especially an elderly patient who has had multiple strokes and is coming to you FOR HELP. You just don't. God, I wish I would have been there. She is @#$@ing disabled, you freaking horse's arse!

I am currently in the process of finding out who this person was and the name of his immediate supervisor. I can't believe someone would act that way to a helpless little old lady who can not even speak up for herself.

Medicaid: The Latest Installment and Something You Need To Know

2010-01-22T19:16:00.000-08:00

On a whim, I tried to call in to the Office of Public Assistance yesterday and reach Betty. She wasn't there of course, but I spoke to a very sweet and HELPFUL individual who helped me find the information I needed. Can you believe that? In a GOVERNMENT OFFICE! She was attentive and patient and NICE! Her name was Paula, and I now love her.

Anyway, what I found out was this: It used to be that once a person signed up for SSI (Supplemental Security Income), their information was sent to the Medicaid office and was processed automatically.

This is apparently no longer the case. I don't know why. I could guess, but I don't want to be that pessimistic.

The only way someone can get enrolled in Medicaid THROUGH SSI is if SOMEONE CALLS MEDICAID immediately afterward. (Again, what in the hell do people do who don't have an advocate?) So, Ms. J was NOT enrolled in Medicaid over these last few months. Instead, her information was sort of..."floating."

We are crossing our fingers that she will soon be officially on Medicaid now that the call has been made. We are also hoping that it won't take the full 45 days of processing time that it usually does. Since she has had SSI for two months, I certainly don't see how it could.

Thank you, Paula. We are hoping and praying!

Not An Easy Answer

2010-01-22T19:08:00.000-08:00

Okay, so. I've been thinking about my last post, and I feel that it is slightly misleading. I created it half in jest, but I do want to make it clear that I know depression and burnout are very real and very serious problems. Sometimes the only thing you can do to stay even moderately sane is something small and simple that reminds you of who YOU are. (And to quote Rabbi Kushner, "Who you work for.")

Now, it's also misleading in the sense that if you have a client or family member such as Ms. J, there is no way on God's green earth that you will be able to do any of those things for more than just a few precious minutes a day, if that. Still, I do urge you to create your own list and to follow through with it. FIND those few minutes. They will make all the difference in the world.

28 Ways To Allieviate Depression and Burnout

2010-01-19T14:17:00.000-08:00

1. Flight.
2. Cats.
3. Naps.
4. Videos of cats/kittens/baby animals on YouTube.
5. Blog.
6. The Beatles.
7. Pride & Prejudice. (Any version will do.)
8. Call Mom.
9. Learn to Crip-Walk. (You are so cool.)
10. Fables.
11. Libraries.
12. Exercise.
13. Sing. (Best if done in solitude.)
14. Create a Facebook page for family member/client.
15. Dance. (Also best if done in solitude.)
16. Pray. Someone/thing out there is listening and does actually "care."
17. Draw.
18. Think about making this experience into a book. (Someone would buy it, right?)
19. Bookstores.
20. Hot, caffeinated beverages.
21. Harass significant other or best friend with barrage of text messages.
22. Read. Novels, Self-Help, whatever. Do what you gotta do.
23. Hot Baths.
24. Humor websites. McSweeney's is a favorite.
25. Eat. (Do be careful with that one.)
26. Make stuff.
27. Remember why you are where you are and why you are needed there.
28. Call Mom again.

I Simply Do Not Understand Medicaid.

2010-01-19T13:35:00.000-08:00

I don't. I really don't. I was able to get Ms. J enrolled in Supplemental Security Income (SSI), which I was told would automatically qualify her for Medicaid and thus make her eligible for all sorts of help. Now, you can only imagine how happy I was to find out that we may be able to get some of her care paid for. I think I really did jump up and down. I know for a fact that I screamed like a little girl and waved my hands around Wallace & Grommit-style.

However, here we are a good two months post-SSI approval, and no Medicaid info has come our way. We had a Medicaid nurse visit last week, who told us that we would need to get a waiver to apply for more hours and equipment since Ms. J requires so much care. Okay. Five calls to three separate offices later, I am still none-the-wiser. What would elderly folks do in a situation like this if they have no one to speak for them? I find it absolutely incredible that it is this complicated. Way to go, government bureaucracy.

I don't even know if I fully understand this process, and I would like to think that I'm a reasonably intelligent person. There needs to be a flowchart of some kind showing the different avenues to the right end. Or something. I wish I knew.

Here in this state, it seems to go like so:
1. Spend 5000 hours collecting paperwork for Medicaid. This seems to include, but not be limited to, 2 years worth of ALL bank statements, proof of all assets such as property, cattle, vehicles, jewelry, lock-boxes, savings accounts and any and all gold teeth, nuggets, or krugerrands you might have lying around. This is, of course, to demonstrate an individuals need for assistance. Fine. Whatever. They need documentation. We get it.

2. Spend 5000 hours looking through the government pages in the phone book for anything related to help for the elderly.

3. Spend another 5000 hours on the phone to 5000 more offices trying to figure out what the hell is going on and who to speak to next, only to be sent off to your 5000th voicemail to some woman named Betty.

4. Wait.

5. Imagine spiders spinning webs under and around your unmoving, immobile form as you wait two weeks for Betty to return your calls.

6. Wait longer. They are so busy!

7. Start creating picket signs in your free time. If Betty won't come to you, you'll go to her.

8. Start a one-man protest outside of The Office of Public Assistance in the hopes Betty might condescend to throw a glance in your general direction. ("We need pay! For Ms. Jay!")

9. Be escorted back to your vehicle by an armed guard named Fred. Fred warns you in a jocular tone not to get your panties in a bundle. You hate Fred. And also the word "panties."

10. End up back at home, slumped over in an E-Z chair, letting the cat chew on your arm. Why stop the bloodshed?

Maybe not all of that has actually happened, but you get the idea. Point is, I am on a mini-vacation at Barnes & Noble today because I cannot deal with one more call to this Betty person. One of Ms. J's care-givers is there today, so I sit here on my computer, listening to music, with a stack of kids books and comics nearby. For the moment, I am content.

Betty, if you're out there...you know my number.

That Darn Cat

2010-01-15T22:03:00.001-08:00

I left a cupboard door open this evening, which H saw as an invitation to go exploring. And that she did. She climbed in and somehow broke a Corningware dish into a million different pieces. I have no idea how she managed that.

Oh, Dad.

2010-01-13T17:40:00.000-08:00

A conversation that just happened between my father and me, after he came from outside and saw me for the first time all day.

Dad: "Woah, you look terrible! Like, really awful!"

Me: "Uh..."

Dad: "No, really. Those circles under your eyes? SO DARK. Wow. I am in awe."

Me: "Um."

Dad, raising his thumbs: "No, REALLY. Thumbs UP! You are totally detoxing. That is GREAT!"

Me: "Thanks."

Dad: "You know, though...that you're only scratching the surface of your toxin level, though. Sorry to remind you of that."

Me: "..."

And thus concludes a regular conversation that you might hear any day of the week in this household. Good Lord.

Kidney Cleanse

2010-01-13T17:00:00.000-08:00

My dad has been urging me for quite some time to try this Dr. Schultz Kidney Cleanse, and I decided this week was the time to do it. I rue the decision. RUE! It's really not all that bad, except for the headaches, fatigue, and nausea-inducing tea. The cleanse is five days long. Day one and five allow raw fruits and vegetables. Days two, three, and four only allow diluted fresh juices. And the tea. The horrible, wretch-worthy tea.

The tea probably isn't that abhorrent to most folks, but both the smell and taste remind me of a dieter's tea I used take years ago. It is awful, gut-busting stuff. Anything reminiscent of it makes me want to hurl. Did I mention that six cups must be ingested throughout the day? In addition to a gallon of water and detox tonic? Awesome.

So anyway, I am hungry, but that's not the worst part. I don't even mind the hunger-pains. It's just the lethargy. I would like to just sleep through the next three days, but I cannot do that of course. I had supposed that it couldn't be worse than having to do care-giving while having H1N1. (Indeed it is much easier, though still very unpleasant.) Have I told you about that, yet? I will have to play catch-up and include that one in here.

I am going to keep taking this one day at a time, enjoying the moment each night when I can cross the day off the calendar.

I am finding that I am crankier during this time than I have been in a while. I really feel badly about it. The whole reason I agreed to the cleanse was because of how long this illness had drug on, and I do know from experience that fasting can indeed get rid of a cold or flu faster than just about anything. Also, clean kidneys are supposed to result in clearer skin. Well, we shall see.

The things we do in the name of vanity...and clear sinuses.

Sickly

2010-01-11T10:54:00.001-08:00

The reason, I've been gone, is because I've been sick for about three weeks now. Prior to that, I was going nuts with Christmas prep. Not only was I trying to make all the gifts for my own family, but I also had to do gifts for two other families.

Speaking of X-Mas, Ms. J's caregiver and I also took her shopping in the most ridiculous weather (I think the storm dropped about a foot of snow). Still, we managed to get her to the mall in a nearby town and also to a local clothing store. The local store is Ms. J's favorite place in the world to buy gifts. They carry nice clothes and lovely western gifts, so it can often be a one-stop-shop...even though she usually spends WAY too much money in the process.

Anyway, lot of late nights left me with a nasty sinus infection that has since moved throughout the rest of my body. Head, nose, ears, throat...now the insidious thing is resting in my upper lungs. So lame. Oh, AND I had also was the recipient of a full-body detox rash after taking the herbal supplement Lobatium. It was harmless, but it looked simply awful. I was hideous. And itchy. Well, only partially so. For some reason, the rash started at my ankles and was mostly contained in that one spot. It took about four days for it to go away.

I still haven't been to the doctor. I've been taking every natural supplement Dad has provided (including the rash-inducing one) so as to cure the damn thing myself, but it still isn't going away. He thinks it's all keeping me from getting walking pneumonia, but I have my doubts. I am using a neti pot twice a day, filled with a mixture of colloidal silver, Celtic sea salt, iodine, virgin coconut oil and distilled water. I gargle with a similar solution twice a day, morning and night, am taking C, B, D, Zinc, more iodine, Detoxygen, and GABA and Melatonin at night to sleep. Oh, and the cherry on top: a humidifier spiked with peroxide for nighttime. It has bleached both my hair and my eyebrows, something I just noticed day before yesterday. I am slightly redheaded right now.

I know I could beat this thing if I could just get some good sleep. If it isn't stress keeping me awake, it's Ms. J (not her fault!) and her needs. I just can NOT seem to get good sleep for the life of me. The GABA and Melatonin has helped slightly, but not enough to KEEP me asleep. I don't know what to do.

Anyway, so that's that.

Sorry for the Hiatus

2010-01-11T10:48:00.000-08:00

Since only one person out there knows this blog exists, I am sure I don't have many heartbroken readers out there. I am glad in a way, since I haven't been on here in about a month. I've been struggling with whether or not to go public with this thing. I don't want to tell family, since there are many intimate details in the postings that might rob Ms. J of her dignity. So, if I do let more people know, I need to go about it in a way that preserves privacy. Or, I may just keep this to myself. I truly think that this experience could be made into a very good book, and this could serve as my journal. (First things first, though. I need to be better about posting. I always think I will remember the details, but one never does.)

So anyway, ONE PERSON OUT THERE (you know who you are), sorry I haven't been around. I will do better.

Some Nights...

2009-12-01T23:38:00.001-08:00

...are so bad, all you can do is cry. When frustration overwhelms you after hours of trying in vain to get your loved one comfortable and to sleep, all you can do is sit somewhere where no one can hear you and let it all out. Frustration leads to guilt, then to sadness. Cleaning and cooking all day, in addition to back pain, lack of sound sleep and general stress does not mix well with the late-night routine your loved one has somehow acquired.

Would that I could just get her comfortable and to sleep before 1 am and perhaps through the night till at least 9 or 10 without any interruptions. Both for her and for me...really. I am not just saying this for myself. She has been exhausted, depressed, and extremely needy all day long. Adequate sleep could perhaps fix that.

I wish these days didn't happen...days when you are sure that you simply cannot do it any more. Days where you can't stand to hear the sound of her cries that come literally every 60 seconds for something that she doesn't actually need or even remember once you come to her side after working on something else that she had just asked you do do a minute prior. Nights where you don't even want to go near her door because you know you will have to do something crazy like move toes or move the sheet a literal half-an-inch in order to make her happy until she calls for you again in 30 seconds after you've already laid down and then asks you to cover her mouth with the blanket because her mouth opens during the night and gets all dry but you can't of course because she may suffocate since she doesn't get a lot of deep breaths in anyway but she insists and you have to come up with increasingly creative reasons not to do the crazy things she is asking you to and you can't say no to her because hey, let's face it, this is your Grandmother, the lady that raised you half your life and all you want is for her to be happy and comfortable but no matter what you do you know you can't because not only do her crazy demands never actually do any good or even make her happy, you cannot really control someone's happiness and then it is just all too much again.

But I suppose that if we didn't have these days we would never appreciate the good ones. The ones where you get to laugh with her and watch Pride & Prejudice again and take her shopping or to a restaurant with the best quiche in town. The ones where you feel so lucky to be able to spend this time with her, knowing that others may regret the time they did NOT spend. Then, with this perspective, it becomes slightly more bearable.

Fun Things

2009-11-28T20:26:00.000-08:00

I worry a lot that Ms. J will lose mental acuity from all the time she sits in front of the television. She worries about it as well, and gave me instructions to find a word game for her during today's Barnes & Noble trip.

I decided that this card game version of Scattergories was a good one. It's really a good substitute for the full game, especially since she can't write now. I have a feeling she will have fun with this, since it's something the whole family can enjoy. It's very sad to play games during the holidays and have her just sitting there, watching us. Cruel, I think, could be another term for it. I would like to keep her included in everything we do, so she feels like she is still a part of things. I can't imagine how it would feel to be unable to participate after always having been the matriarch of the family, the one who always made sure everyone was included.

Anyone else have some good word game ideas?

Getting Out of The Hospital

2009-11-28T19:21:00.000-08:00

We got Ms. J safely out of the hospital yesterday evening after the nurse practitioner deemed her healthy enough to return home. She is being as feisty as ever.

My father is home, and is attempting--sort of--to help with the caregiving. The whole reason I am here is because he has been gone on business. I swear, his fuse is getting shorter and shorter each time he returns. He seems to have no patience with his mother, whatsoever. It is seriously ulcer-inducing for those of us who have to listen to their squabbling. It stresses me out to hear them interact.

Hold on, must reposition her.

I don't know how much longer...hold on, need to get water.

Now I can't find the dang Thick-It. Sheez. I ought to just buy a case of the stuff.

Anyway, I can't remember what I was going to say. Something to do with getting Ms. J back from the hospital. Oh, they took her off most of the pain meds, thinking that was causing her to pass out on us. So, now the poor lady can't get comfortable and is cranky and irritated from breakthrough pain. I really don't know what the solution might be.

Thanksgiving

2009-11-26T23:19:00.000-08:00

Well, it has certainly been a time of great thankfulness. Ms. J is doing better, she's surrounded by family, AND her wheelchair has been returned. (Still no idea where it was hiding. Bad chair!)

I had breakfast with my father, then went to the hospital to get Ms. J's makeup on and such. Just in time, as the family started filing in after that. A few hours later, I took off to go make dinner.

And boy, it turned out GOOD. Really, it did. I used a recipe from the Food Network to brine the turkey, and it was almost perfect. (Slightly too much salt, IMO.) Following that came yams, green beans, squash, stuffing, cranberries, turkey cookies, stewed oysters, and pie. Yum. My parents and I ate, then pureed everything and took small portions to Ms. J. She liked it all, except the oysters. Apparently they don't do well when blended.

There was a considerable lack of mashed potatoes in my T-Giving meal, since Ms. J hates them now. They use instant potatoes to puree everything at THE HOME or at the hospital, so they've lost favor.

So many things to be thankful for this year...thanks to God for letting us keep Ms. J for a bit longer. Thanks to certain family members who have finally come around.

Too Much Poop To Tell

2009-11-25T23:24:00.000-08:00

Ms. J still can't go home til we figure out what is going on with her blood pressure and whatnot. They haven't ruled out the narcotics as a reason for her episodes, though. I truly would not be surprised if her pain meds were the cause for some of these problems.

She had several more visitors today, one of whom brought us some homemade zucchini bread. Yum. I spent the afternoon cutting up a turkey and attempting a brine...I did it in quite a hurry and am not sure it will be successful. We will be having Thanksgiving up at the hospital, but I don't want to make too much food since only a few of us will be eating it. Ms. J's appetite is almost nonexistent, and what she does eat has to be pureed or very, very soft. So, I'm not entirely sure how this will all go down.

Saw a good friend from the past today...someone whom I haven't seen in years. He and I grew up together from the time we were born, really. It was nice to see him and his wife, though I wish he had met under better circumstances...his step-father is in an induced coma in ICU.

Ms. J was in some pain today, and was also very emotional. I can always tell when she's hurting-she starts to complain a lot and simply canNOT get comfortable. All day long she was like that. I suppose when you think about it, many of us act that way. When we are hurting, either physically or emotionally, we become negative and get upset over the tiniest thing. Poor Gram. If it wasn't one thing, it was another.

We finally got an abdominal X-Ray today, but the Doc couldn't tell if the Diverticulitis was acting up or not. To quote her specifically, "there's too much poop to tell." I find that funny. Oh, and Ms. J got her Laugh Of The Day when I tried to explain her bowel problems to the doctor, complete with wild gesticulations:

"We'd have nothing for days, then a HUUUGE blowout, nothing for days, then another HUUUUGE blowout..."

She laughed heartily at that. I suppose you really had to be there for the blowouts to understand how accurate of a description that really was. Well, Ms. J remembered, and thought it was pretty funny.

A Trip To The ER And Then Some

2009-11-23T21:04:00.000-08:00

Well, after two or three days of battling very high blood pressure, I finally decided to take Ms. J to the hospital. I let her decide whether to travel via ambulance or Yukon, and she chose the latter. So, I loaded her up with a bit of help from my mother, and took her in. We were admitted right away, which was nice, but we ended up in the ER till about 4 a.m. They admitted her because of her--ahem--constipation and her high blood pressure. I stayed with her as they got her a little situated, but she was so upset and so tired. I just couldn't bear to leave her. She was so emotional from lack of sleep and I think from also being so frightened at the general situation. I told her I'd stay with her for as long as she wanted me to after she looked up at me from the hospital bed with such worry in her eyes. I haven't felt such anguish in a while. Sure, I've been stressed with all of this, but seeing such acute fear in her just tore my heart in half. She was so weak and stiff that she couldn't press the call button on her own. And with the Lactolase working on her, she was having to call the nurses about every 2 minutes. (If anyone has had experience with that stuff, you know that it takes about 30 minutes to work. Well, with my grandmother, it took about 4 hours. And when it works...it...works.) I talked with the CNA and we rigged the button with an EKG sticker so she could feel it. I tried in vain to calm her and get her to stop crying for a while longer, but finally her tiredness overcame her and she started to relax. I tucked her in and decided to head back home (a 30 minute drive) to get the toiletries, robes, etc., that she requested. On the way, I realized I was much more tired myself than I had realized. I suppose several nights of limited or no sleep will do that. Still, I'm lucky that my absent-minded reveries didn't land me in a ditch, and that I didn't run out of gas. I had been on E for the whole trip and completely forgot to fill up before I left town.

As I drove, I made several calls to friends and family to let them know what was going on, and arranged for people to go up and spend time with her. I had to...I kept seeing her fearful, scared face, and thought about how stressed and frightened she probably was. What if the nurses didn't get to her in time and she choked or something? I have lost one grandparent to a situation like that before. Never again.

Anyway, my dear, wonderful mother (who has been so amazing during all of this) went up and sat with Ms. J until another friend arrived, who was then followed by my aunt and my grandmother's caregiver. After that, my formerly estranged cousin showed up and fed Ms. J some dinner. Meanwhile, I was fielding calls from more friends and family and attempting to catch some zzz's. I was able to get a few hours in, but the whole time I had stressful and scary dreams about things spiraling out of control. It wasn't good. When I awoke, I realized my mother had been there the whole time, fielding more calls and hoping to help me out when I finally came 'round. She's so awesome.

I am so blessed. Really, I am. I think my grandmother is starting to realize that she is, too.

I finally made it back to town, after having deliriously packed several bags of things into the Yukon. I'm notoriously bad at accurately packing suitcases, and almost always pack more than I need. (You just never know what you might want on hand!) By the time I got back to the hospital, Ms. J was out like a light and sleeping peacefully. I taped up some pictures of family to the wall and brought my cousin's flowers so that she might enjoy them before they wilted completely.

Now, I am tossing back a glass of wine, half a chocolate bar, and watching a Gossip Girl. My kitty made the trip in to my mother's with me, where we will stay until Ms. J is out of the hospital. It's only a few blocks away, which is highly convenient. Tomorrow I hope to get to the hospital around 9 or so. For now...I must sleep.

Oh, and did I mention that the hospital has lost my grandmother's wheelchair? Yeah.

Battle of BP

2009-11-22T20:00:00.000-08:00

Ms. J and I have been battling high blood pressure all day today. I am getting quite scared and her regular caregiver thinks we should take her into the ER. I was here alone today, taking advice and orders via text from my dad (the naturopath) as well as from Gram's caregiver. We tried magnesium orally and topically, a full magnesium bath, her regular blood pressure medication, elevating her feet, carrot and celery juice, more magnesium, chlorophyll, coconut oil, homeopathic silver, homeopathic Human Growth Hormone, and probably a few other things that I can't remember.

It has lowered to 163/87 now, which is still very high. Just an hour ago the bottom, the diastolic, was reaching 111...way, way, way too high. I had just gotten it down when a choking fit brought it right back up again. Sigh.

I am waiting for a call back from the doctor on call at the Clinic. Blah.

The Situation of the Lovely Ms. J, Part 1

2009-11-21T19:47:00.000-08:00

As this is my first post, I must say that the likelihood of all my paragraphs being completely disjointed is very high. My grandmother is very needy, and if I am writing while I am with her, I will probably have to pause every minute or so to reposition her or get her something.

Oh, and I have decided that as the need arises, I will be referring to Gram as "Ms. J" (who is not to be confused with Miss J on America's Next Top Model) for privacy purposes.

My grandmother has always been the matriarch of the family, but over the years has been declining in health due to strokes, broken hips, and various other injuries. She is completely dependent on her caregivers for all her needs. She has also been estranged from several close family members, which has sometimes made her decline a lonely one. She is 87, has spent her life on ranches, farms and in hunting lodges, been married and widowed, produced 3 kids (and helped raise countless others) and has always been very hard-working. The fact that she is now what they call a "full-assist" is very hard for her, as you might imagine.

Hold on, must reheat the hot water bottle.

Ok, back. So anyway, Ms. J grew up knowing how to work and how to make others work, too. For lack of a better way of putting it, my grandmother was always known for being a control freak. This, along with a few of her other less amiable traits, did tend to drive some people (usually of a similar nature) away. Still, she has always been a very loving woman, and has cared for many people under this very roof. Relatives, friend's children, the friend's children's children...the list is too numerous to even begin. She always cooked for everyone, made sure manners were up to par.

...To be continued. Time to get Gram to bed.

Welcome!

2009-11-21T19:35:00.000-08:00

Welcome to Imovetoes.blogspot.com! I am a family caregiver, and hope to share the experience with others out there who are in a similar situation. While I am new to caregiving, I hope that my daily trials and blessings both may resonate with someone out there!