Odds and Ends

So ever since I wrote the last entry on Music to Grieve By, I think of other songs I would add to the list. Of course, I haven't been writing them down, so this will not be a complete update. But there are some songs I would like to add.

When I finished my PhD, I made a mix cd for my advisor. Ever since I started the program in one of her classes, I knew that someday I wanted to give her two songs that give thanks--Sinead O'Connor's "Thank You for Hearing Me" and Natalie Merchant's "Kind and Generous." So I had another 70 minutes to fill on the disc, and I filled it with songs that somehow reflected the dissertation/PhD experience. I listen to that cd a lot, as it turns out, and there are some songs on there that do help me in this extended grieving process. Several are from Patty Griffin's Children Running Through cd, especially "I Don't Ever Give Up," "No Bad News," and "Up to the Mountain (MLK song)."

I also find helpful two songs in particular (there are so many to choose from) from Amasong, a lesbian/feminist chorus from Champaign/Urbana that my former college roommate belongs to. They do a lot of folk and spiritual music from a variety of cultures. The two songs I turn to most often (though only one is on my mix cd) are "I Cannot Keep from Singing," and Bobby McFerrin's "23rd Psalm (dedicated to my mother)."

Not on my 'special' cd: I mentioned Peter Gabriel last time; he has many selections that stand out, but "I Grieve" from the City of Angels soundtrack deserves special mention for this purpose.

Yesterday I listened to Shawn Colvin's Fat City. The lyrics sometimes reflect her relative youth in 1992, but her songs are usually thoughtful and emotional, and that works for me. This was also my first Shawn Colvin cd, so I always think of it fondly.

And lest I forget the most important song from the most important film ever made, let me add Judy Garland's "Somewhere Over the Rainbow." I grew up loving that movie, my parents both loved Judy Garland, and "Somewhere Over the Rainbow" is one of the last songs I could get Mom to sing along with. "You are My Sunshine" is the other one. Israel Kamakawiwo'ole's version of "Rainbow" is also a favorite, but in my world, nothing compares to Judy.



Moving on from the music, there is one other item I wanted to post. Yesterday, a friend asked me in an email how my day was. I responded with unusual thoughtfulness on my part, and realized that what I wrote I could have written for this blog as well. So I am inserting a part of it.

"My day is winding down. We get a little online time while watching Mom eat her dinner. She eats herself, but needs some coaching and prompting, and lots of cleanup. But for those 30 minutes or so that she's actually eating, we get a short break. We'll eat after we put her in the recliner, just as we did when you came. It's been an emotional day for me. More and more in the mornings, after getting Mom up and washed and dressed and fed and off to day care on the van, the impact of her long, slow dying, and the prospect of her actual death getting more real and foreseeable, all puts me in touch with a grief that doesn't moderate with time. It's worse on the mornings I go to yoga, as I did this morning. Yoga makes me slow down, breathe, and become aware of what's going on internally. And now the end of the day, near the end of the week, and I'm tired. It was a good day overall, mostly because it started with yoga, and no matter what that brings up, it still feels better to start the day that way."

And so it goes.

Music to Grieve By

So today I thought I'd write about some of the music I listen to that is most helpful as we live with Mom's care. And the truth is, it is music to grieve by. Every day as I watch Mom deteriorate, even slightly, the grief continues and accumulates. It's as wearing as her daily care. It is, in fact, almost inconceivable, which is why finding something like music that acknowledges grief, accesses it, and/or comforts it is something I spend time thinking about.

(Warning: I'm a Lilith Fair kinda gal, which explains the pool from which I dip. )

The most obvious choice is Rosanne Cash's Black Cadillac (2006). Written after losing her stepmother (June Carter Cash, d. 5/15/2003), father (Johnny Cash, d. 9/12/2003), and mother (Vivian Distin, d. 5/25/2005) in the space of two years, the album is clearly a personal portrait of loss. At the same time, Cash leaves room for the listener to access his or her own grief, whatever that may be. Two of my favorite songs include "I Was Watching You" and "God Is In the Roses." Throughout the album, Cash speaks directly to, about, and for her parents, especially her dad, Johnny Cash. In "I Was Watching You," she speaks to him, singing, "All these years to prove how much I care / I didn't know it, but you were always there / until September when you slipped away / in the middle of my life / on the longest day / now I hear you say / I'll be watching you / from above / cause long after life there is love."

Lest you think she gets maudlin, in "God Is In the Roses," she takes the stock image of a rose and makes it concrete and real, playing, I believe, on the cliche, "God is in the details":

God is in the roses
the petals and the thorns
storms out on the oceans
the souls who will be born
and every drop of rain that falls
falls for those who mourn
God in in the roses
and the thorns



The sun is on the cemetery
leaves are on the stones
there never was a place on earth
that felt so much like home
we're falling like the velvet petals
we're bleeding and we're torn
but God is in the roses
and the thorns

If I could play one song at Mom's funeral, that would be it.

There is also Cash's song "September When It Comes," from her Rules of Travel cd. It's her only recorded duet with her dad, and it's unbelievably touching. He was clearly weak when they recorded it, and his voice is a little scratchier than usual. Plus it's about aging, and was recorded in his last years. I heard Rosanne interviewed on NPR's "Fresh Air" after it came out, and the whole concept of the song and performing it with sick father was incredibly moving. Here's one verse:

"I plan to crawl outside these walls / Close my eyes and see / And fall into the heart and arms / Of those who wait for me / I cannot move a mountain now / I can no longer run / I cannot be who I was then / In a way, I never was." To hear Johnny's voice creaking a little on that verse is poignant, to say the least. And then for him to actually die in September--that's synchronicity.

Another album that gets frequent play around here and helps me keep in touch with my grief is Annie Lennox's Songs of Mass Destruction. While not specifically about grief, both the tone and lyrics set the mood. Most notable for me is the song "Dark Road." It was on this morning, and these lyrics jumped out at me: "I can't find the joy within my soul / it's just sadness takin' hold / I wanna come in from the cold / and make myself renewed again / it takes strength to live this way / the same old madness every day / I wanna kick these blues away / I wanna learn to live again." It's not that I feel my life is that oppressive all the time, but sometimes you just have to give vent. Another song on this album that gets me is "Lost." On this one, it's not the lyrics as much as Lennox's plaintive voice wailing that one line, "We're lost." It speaks grief to me, and speaks to my own grief, watching my mother die by degrees.
Of course, Lennox plays some much stronger, driving songs, and those can help process feelings, sometimes regardless of the lyrics. It's a very addictive album.

The other album on my most frequent rotation list really has nothing at all to do with grief, but Sia's singing is moving nonetheless. Some People Have Real Problems is my favorite, but Colour the Small One has some great songs, too. I got interested in Sia after seeing her phenomenal video for "Soon We'll Be Found." I'd never seen anything like it. Then my granddaughters fell in love with it. If Sia is playing now, and that song comes on, Avri freezes and says, "Listen! It's my favorite song!" She and Kiana try to do the signing then (she does some ASL in the video), but that usually evolves into general interpretive dance. Anyway, Sia is a great one for a contemplative soundtrack.



Looking at an incomplete list of my itunes music, the Beatles get several mentions ("The Long and Winding Road" being the first one to pop into my head), Elton John a few (see, I do listen to some male music), Peter Gabriel, and a few odd other assorted characters. More to be added? No doubt. I could revisit this topic over and over, I believe.

Incredible tenacity

Well, apparently this positive thinking isn't working as well as I'd hoped. Six weeks since the last time I wrote. Honestly, though, I did feel like writing again the day after I wrote that last post, but I had so many other things to do, I waited. And then I just had so much to do. How does one get out from under this?

I have work. I only work part-time, but it is teaching, which always needs more time than you have. Right now I've got two sets of assignments for each of two classes to grade and return. And this is my afternoon off, so I won't do it now.

Besides my "regular" job, I have Mom. And we do get paid for taking care of Mom. Though I prefer my oldest brother's way of saying it: "If you don't have enough money to live on, then you won't be able to take care of Mom." So we get paid by her trust (thanks, Grandma, for willing enough money to Dad that Mom can be provided for after his death!)

Mom is still holding on with incredible tenacity. She's down to 97 pounds, fully dressed, and she's all muscle and resistance. We try to get her dressed in the morning, and she clamps her arms to her sides, and steels her knees so they can't be separated. We try to get her to drink, and she won't swallow. We try to brush her teeth, and she grabs our wrists with a grip that leaves bruises. It gets frustrating, and no one really understands what it's like. Half the time I don't even understand what it's like. I think about how much time her care requires, and sometimes I wonder how she can so completely zap my energy. Then I think about the battles we try to fight on her behalf (the latest being with her day care about the absence of safe parking they provide), with her battling us at the same time, and I don't have to wonder. But keeping that awareness present, so I remember that I'm not crazy or whining, is difficult.

Now that I've started writing, my mind is uncovering all sorts of threads to write about. Can I retain them for more than a minute?

We almost folded the other week. We have three cats and a dog. Our cats our 13 and 14 years old, so they have some health "issues" of their own. One has a special food to prevent tartar build-up on her teeth. One has arthritis, so needs to eat a soft food we can mix her Cosequin into. The third one has kidney disease. We almost lost her last November, but she's doing really well now, thanks to a special food she doesn't like and to twice-weekly subcutaneous treatments. If you're not familiar with what a subcutaneous treatment is, it's basically giving her an IV. Which she hates. We bought a special bag to bind her in so we can control her long enough to stab her and squeeze 150 mls. of fluid into her. We have to feed the three cats separately since they each have their own special foods.

Then two weeks ago we had to take Cleo the wonder dog in for a teeth-cleaning. She had to have two broken incisors removed, which put the cost at you-don't-want-to-know, but worse than that, she wouldn't eat, had accidents overnight, and had diarrhea for ten days in a row. That was the straw that came perilously close to breaking the camel's back. I really was not sure I could take care of one more living creature. Oh yeah, I was simultaneously conferencing with my freshmen, what they call "developmental advising," making sure they weren't failing school and/or suicidal. It was a lot all at once.

But, here I am, with an afternoon off, but ending this post before I tell EVERYTHING there is to tell. Jeanne wants to use the computer as we sit here in Starbucks, and I really should let her. Besides, I don't want to get into the habit of this writing thing. People might get the wrong idea.

p.s. I am aware of the irony that I need to take an afternoon off from caring for Mom in order to have time and energy to write about caring for Mom.

Trying to think positively

Mom smiling, 5/29/08 1:30 a.m.

It happened rarely enough even a year ago to make it a picture-worthy occasion.

I feel like this blog, though I seldom write to it, is too often negative. Perhaps I've been inspired by Julie & Julia, but I can't help but wonder why anyone would want to read this. And maybe that's not why I'm writing this--it's not my 'stated' reason--but still . . . . If it didn't matter if no one reads this, I would just be writing in my journal. By the way, I don't write in my journal at all anymore, and haven't for years, so I guess I'm not doing too badly by this blog.

Anyway, I've decided to try to write about the positives of caring for Mom. Unfortunately, at her stage of the disease, those are few and far between. This morning, for example, Mom smiled when we woke her up. She smiles now about once every 3 or 4 months. The neurologist says she has lost the ability to smile. But this morning, she looked just a little like she was smiling, and when I spoke to her with my own big smile, the left corner of her mouth turned up just a little more. Enough to qualify as a real smile. But not enough to see in a picture.

After Mom was diagnosed with Alzheimer's, back in '96 as far as we can tell, she did well for quite a while. Once it became more and more apparent that she couldn't live alone much longer, Jeanne and I asked her to come live with us, not because of obligation, but because we loved her, and enjoyed her company, and we wanted to do this for her. When the time came that she did indeed need to move in with us, it was still sometimes hard to tell how advanced the disease was. We still talked, and laughed; she even voted in the 2004 election via absentee ballot. We asked her if she wanted to, and she said yes, as long as we didn't tell her who to vote for. We watched the Kerry-Bush debates, discussed them, and let her come to her own conclusions. She had definite opinions. Then I helped her fill out the ballot and mailed it in. She didn't like to order her own meals at a restaurant anymore, but she always took voting pretty seriously. That was a decision she still wanted to make.

Her disease has advanced slowly, which allowed for some quality time in those first couple of years living with us. But she no longer has that quality of life. She rarely responds even to our granddaughters or the dog, and they used to be the light of her life. Mom is enduring more than she's really living.

Jeanne and I did, as alluded to earlier, see Julie & Julia earlier this week. It's a wonderful film, and Meryl Streep is an absolute delight as Child. Afterward, I couldn't help but think, "Mom would have liked this movie. Unless, of course, it would have made her feel inadequate about her cooking." Mom was a great cook, but did not try anything remotely Julia Child-ish. Confidence--about anything--was not her strong suit. Her most elaborate dish was Beef Wellington, which my dad insisted she learn how to make after having it at a hospital fundraiser. She made it every year for Christmas until too many of us became vegetarian to make it worthwhile. She may have watched Julia on occasion; she liked her, though her favorite cooking show was "The Galloping Gourmet." Still, I believe she watched these shows for entertainment. She was interested in their cooking at the spectator level, not the aspiring gourmet chef level. At least Mom still likes to eat. And believe me, the quality of the food matters. She's not picky, but if she doesn't like it, she won't eat it. There are some aspects of quality of life that still matter to her.

88 here we come?

Mom and Cleo, 6/5/09

Today is Mom's birthday. She's 87, and going stronger than imagination can fathom. Every time I think she's heading for her final decline, she rallies. Some months ago I was sure she'd be gone by or around Christmas, but now I think she could keep going another year or longer. Her weight keeps dropping; at last measure 2 weeks ago, she was down to 98 lbs. with all her clothes and shoes on. But she is strong, strong, strong.

I can't believe she's happy to be alive. Nothing brings her happiness anymore, and the only things she likes to do are eating and sleeping. Her level of awareness, while low, still shows some amazing windows of clarity. She can be sitting in her wheelchair, eyes closed, refusing to respond, and then you ask her if she wants some chocolate. She still won't open her eyes, but up comes her hand, as she reaches for the chocolate. And if you tell her she needs to do something before she can go to bed, she will stop resistance and cooperate. But I don't think she knows I'm her daughter. She knows both me and Jeanne, but I don't know that she recognizes us beyond "those people who are always making me do what I don't want to," like drink, transfer from the chair or bed to any place else, get dressed, etc. She does usually recognize that I play the good cop and Jeanne plays the bad cop (Jeanne does enforcer better than I do).

We took her off both Aricept and Namenda. We were told it would accelerate her decline. If anything, she seems more alert now. Someone said that she's clearly not ready to die yet, though we don't know why she isn't ready to let go. So we keep schlepping on, trying to stay whole and healthy and sane. Then again, were we ever all three?

Where does the time go?

It's been a while since I last wrote. So much for writing at least once a week. I'm not sure why I haven't been able to write. We missed a lot of time at yoga as well. Yoga and writing the blog are both activities meant to help us survive caring for Mom. Funny how those are the activities that get dropped when time seems to run short. That resolution to relax and live in the synchronicity as we did on vacation seems to have suffered a terrible death. Let's see how my powers of resurrection are working. We started back to yoga this week, and went both days we had planned. And though I spent a good chunk of time devoted to writing today sleeping in Starbucks, here I am, writing again.



How's Mom doing? The Energizer Bunny keeps on going. We discontinued her Aricept, something her neurologist said we should do the next time she had a downturn. At this stage of Alzheimer's, it appears only to prolong her life. Prolonging her current state of misery is doing her no favors. So when we returned from vacation, we assumed she would be worse, and stopped the Aricept. She wasn't any worse; in fact, she was surprisingly alert. We stopped the Aricept anyway. Then we met with the neurologist again, who this time suggested we could stop the Namenda. Both Jeanne and I had the understanding from our previous meeting that she thought the Namenda might have some behavioral benefit, and we could keep that going. This time, she said there is no medical benefit from the Namenda without the Aricept, and there was no reason to keep her on it. We were confused by the change. I called Mom's primary care physician, who is not an expert in Alzheimer's and she said she would research it. After a week, we decided to take Mom off the Namenda, even though Dr. Barb had not yet gotten back to us with what she found. That was about 2 weeks ago, and again, we see no difference.

Okay, it is now a few days later; once again, time slips away.

To continue, Mom is now off both the Aricept and Namenda. Given our confusion about taking her off the Namenda, I tried doing a little online research, and couldn't really find anything except for other caregivers and those with Alzheimer's writing in to different forums debating the use of these medications. I was surprised by how many complained of side effects and discontinued the meds. Mom went on Aricept while she was still living on her own. She didn't tell me when she first went on it, so I never noticed a difference. If she did, she didn't say. She started the Namenda after coming to live with us, and that made a positive difference. Her degeneration before Namenda consisted of plateaus, then a sudden drop in functioning. It was incredibly hard on all of us. We'd go along, thinking things were okay, getting used to whatever level she was at, then without warning, there would be a sudden, heart-wrenching degeneration. The Namenda smoothed that all out. No more plateaus, and no more falling off the edge of a cliff. The gradual slope of degeneration is much easier to manage and adapt to.

Right now, Mom is nonverbal. She can neither walk nor stand without help, and even with help it's a struggle to do either. Her body is becoming more and more rigid. It's a process the neurologist calls 'disinhibition.' The word is counterintuitive to what I see happening, but she explained it by saying that the mind tells the muscles to relax; otherwise, the muscles' natural state is to be contracted. As the brain shrinks due to Alzheimer's, it loses the ability to tell the muscles to relax. Thus they become more and more rigid, tight, and inflexible. Who knew?

Home again

It was two weeks ago today that we left New Orleans. We had a great vacation. I finished the paper the night before the presentation, and the presentation went very well. Interestingly enough, Mom did try to bring us back early. We arrived on Tuesday, and on Wednesday started receiving phone calls from the nursing home. Mom had pneumonia. They were keeping her home from daycare, and her doctor was coming to see her that afternoon. Pnemonia in someone my mother's age and condition could easily be fatal. But going home would accomplish nothing but the cancellation of our vacation.

Mom has a history of falling every time we would try to take off for a few days. Either at home just before we left, or the first time we put her in respite, the first day at the care center; that time she broke 4 ribs. And made an amazing recovery. My thought upon hearing of the pneumonia was that she can't get up on her own anymore, so she can't fall; instead, she'll get sick in order to try to bring us home.

Luckily, her doctor, my college friend, saw her that afternoon. She called and left a voice mail at our hotel that allowed us to enjoy the rest of our stay without worry about Mom. Dr. Barb looked at the x-ray, which she said was not of good quality. She said that what looks like the beginning of pneumonia could also be the result of Mom's shallow breathing. She had a cough, but was already perking up from her morning lethargy. She said not to worry, stay and have a good time. Knowing that the nursing home and Dr. Barb were now in communication (the charge nurse at the home kept commenting on how nice Dr. Barb was!), and that there was nothing we could do anyway, we let go and enjoyed ourselves.

We walked, and ate, and listened to music, and ate, and took tours, and ate. Great seafood--we had such terrific chargrilled oysters at Acme House, it's one of two places we went to twice (the other was the little middle-Eastern diner a couple of blocks from the hotel where they made the felafel as you waited--fresh and tasty!). We had great shrimp and red beans and rice. New Orleans is not really a town for vegetarians; thank goodness we eat seafood.

I loved walking the streets of the French Quarter, looking at architecture and people so different from what I'm used to. The people were so incredibly open, stopping us on the street just to have a conversation. None of that friendly Midwest reserve. And the history! The first tour we took was a Haunted History tour, which really was about the history of New Orleans and the French Quarter, and some of its many supposed hauntings. At one point I mentioned to Jonathan, our tour guide (who is a natural-born storyteller) that one thing I liked about New Orleans is that they are not always trying to modernize and upgrade everything. "Thank you for noticing," he replied. "New Orleanians don't just love their history, they live history." And I must say that most people we talked to were extremely knowledgeable about the history there.

In addtion to the Haunted History tour, we toured the Bayou, and on Easter Sunday we tried to tour one of the cemeteries (more about that in a minute) and we took a Hurricane Katrina tour. There is still so much devastation from Katrina; houses that have been renovated interspersed between the vacant lots where houses used to stand and the still ruined shells of houses. It was sobering. The picture on the right shows the building of two houses by Brad Pitt's organization, Make It Right 9, behind the vacant lots of demolished homes.

The cemetery tour almost made for a great story. We arrived at the gates of the St. Louis I cemetery at the posted time, and the gates were locked. Other people arrived and left, but we hung around. Eventually the tour guide showed up, but he didn't have a key. The police are supposed to unlock the gates on the weekend, and he never showed. So Walter gave us the external tour, took us around the walls, explaining the above-ground tombs and how they worked. There are 3 gates, and at each one he showed us what he could from our limited vantage point. He also suggested that we climb the gate. I hesitated, only because I have bad knees, and had to be sure I could both get in and out. Before I could respond, Walter said he would go over, take my camera, and take some pictures. So I do have a picture of Marie Laveau's tomb. She was the Queen of Voodoo in New Orleans in her day, a famous historical figure. What a great story it would have made if I could say I broke into a cemetery on Easter Sunday! I keep telling myself I could lie for the sake of the story, but so far have not been able to bring myself to do it.

Pictures from the bayou:

And now we are home again, and life has returned more or less to normal. We really did get away in NOLA, and were able to be present in the moment. And we're trying to hang on to that now that we're home, and life is so different. Here's hoping we succeed.

Vacation

Well, tomorrow Jeanne and I get our first vacation together in over 5 years. We're going to New Orleans for a week, where I'll present a paper at a conference, and we'll play the rest of the time. It's so hard to get away, and requires a fair amount of work to prepare. Yesterday we took Mom to the nursing home where she'll be staying for 11 days. We gave ourselves a few days before we leave and after we come back; it's hard enough to get ourselves ready, but getting Mom ready is a project itself. In addition to packing what she'll need, we have to make arrangements with the nursing home, make sure they get new doctor's orders, arrange the van to take her to and from day care, notify my siblings, make sure all paperwork is in order just in case, give instructions to the day care about things they should watch for since they know her better, write out instructions and an inventory for the nursing home, and it goes on.

I'm tired, but looking forward to getting away, sleeping through the night, and seeing New Orleans, where we've never been. We hope to come back rested and rejuvenated, especially since Mom is more work after she's been in respite. We work pretty hard at keeping her awake and alert and moving when she's with us, and that just doesn't get as much attention where they have multiple patients to care for. She regresses in respite, and because we're trying to keep her as present as possible as long as she's here physically, we have to work to bring her back to where she can be.

She is losing weight. When they discharged her from hospice, she was 115 lbs. Then at the doctor's she was 112. Her last respite stay was 110, and yesterday she was 107. We'll see where she's at when we come home. I think the end is coming, faster than it was before, but with the Energizer Bunny, who knows what that really means?

I'll write when we get back, and maybe paste in some pictures of New Orleans revelry!

The Granddaughters

Jeanne and I have two amazing granddaughters, Kiana, who is almost 5, and Avri, who is 3. They come and spend a day with us once a week. Mom has always loved kids and babies, so for as long as she could still smile, even if she had nothing else worth smiling at, she would smile when the girls were here. Though she doesn't smile anymore, we can still see her interest in them, as she watches them pretty attentively, which again, she doesn't really do with anything or anyone else.

Kiana has a hard time trying to understand the changes in Mom. We tell her that Mary is sick, and Kiana herself says, "Mary isn't alive anymore." That's not far from the truth. She remembers dancing with Mom. She came across this picture a couple of weeks ago, and was so excited. "That's me dancing with Mary! We used to dance together!"

A few weeks ago, we were sitting around the table, holding hands to say our 'gratefuls' before dinner. We pretty much leave Mom out of it if she's started eating, because she doesn't like to stop eating long enough to give us her hand. But Avri reached towards her, and Mom actually reached back and took her hand. Kiana was amazed. "Look! Mary's coming alive again! She took Avri's hand!" She was delighted and so encouraged, thinking that Mom could improve. She hears that Mom is sick, so her experience is that when you get sick you get better again.

Here's a more recent picture of Kiana and Avri with Mom (9/08):

We had hoped that Mom would live long enough so that Kiana will be able to remember her, and I think we may have reached that point, especially if we regularly talk about Mom and look at pictures. I don't know if Avri will remember her, especially since she has never been able to have the kind of relationship with Mom that Kiana has. But Avri is not afraid to hug Mom, and will still sometimes spontaneously embrace her arm. Kiana has become a bit leery of Mom. She doesn't know how to act around her when she gets no response. Hence the "She's not alive" comments.

Being with these growing girls is an important part of us being able to continue to care for Mom. Their youth and enthusiasm help us deal with Mom's continual decline toward death.

While Mom Eats

All I need to do to insure that I'll stop writing regularly is to write that writing is good for your health.

I have a few minutes while Mom is eating. It's the only thing she can still do on her own, except for sleeping. With her meals, we give her finger food that isn't too messy, and cut it into bite-sized pieces. Tonight she's eating salmon, vegetable medley (green and yellow beans and baby carrots) and strawberries. She has always loved fruits and vegetables, so getting her to eat healthy is not a problem. She can no longer use utensils, so eats it all with her fingers. She still has an amazingly good appetite, especially for a woman of her size. At this time of night, however, all she wants to do is go to bed, so keeping her awake and focused on her food is the big challenge.

The latest development with her health is that she has developed a problem with her right wrist. Though right-handed, she's been functioning as a lefty for years, protecting her arthritic right shoulder. Late last week, her right wrist started hanging as though limp. Her arm is not limp, and she still has plenty of grip strength in her right hand. We bought her a wrist brace and called her doctor, who suspects that it's wrist drop.

When Mom was receiving home hospice, they would occasionally send out Maureen, the most amazing Occupational Therapist. She was a miracle worker with Mom. We knew that she worked for a home health agency in addition to the hospice, so we called her to see if she could come out to provide some help for Mom. Long story short, the agency won't send anyone out to help. Even though Wikidoc says physical or occupational therapy can help (and what self-respecting health care provider doesn't rely on Wikidoc?), they say there is nothing they can do. Nothing they are willing to do seems more to the point, and that opinion comes from previous experience trying to get private physical or occupation therapy for Mom in the home. Basically, Medicare pays so far above the billing cost, they won't bother even with private pay home care, since it only pays what they're asking, instead of above and beyond. And you wonder why we're frustrated with the health care system?

Beginnings

Everything has a beginning. Our life together, that is Barb's and my life together. Our life together with Mary, both while she was still on her own in Green Bay/Sister Bay and once she came to live with us. There's the beginning of the Alzheimer's and the beginning of our really providing care for Mary. And with time, some of these beginnings have become fluid, have begun to run together.

They go unrecognized or, maybe, just seem unrecognizable. Some go unrecognized by choice. Others become repressed memory, I suppose. Still, something inside me says that trying to sort through, to recognize and articulate some of our beginnings might be helpful, helpful to you, the reader, as you follow along with us on this jouney we're on, Mary, Barb, and me. And helpful to us as we continue our journey.

One of the first and most consistent questions we hear is "When did she start . . . ." When did she begin chewing her pills instead of swallowing them? Then, the follow-up, "Have you tried . . . .? Have you tried grinding them up and putting them in pudding, applesauce, to hide the disgusting bitterness of the medicine she has to swallow?

From the beginning, she's been incredibly creative in adapting to her illness, to organizing her life of diminishing skill, in an attempt to maintain as much independence as is possible; possible given the many dead ends that pop up each day.

Barb began this blog in hopes of finding some relief from the particular stress we live with. Her mother, Mary, fades further into a fog each day as Alzheimer's does its work, that is, as the disease obliterates greater and greater chunks of her brain. Mary lives with us and we are her primary caregivers. Barb invited me to blog along with her. She wondered if I might find contributing to this blog helpful, too.



Like so many things, time will tell.


This week, as I began preparing to write, I discovered our brand of stress is being considered, is in the running for inclusion in the newest DSM III. Caregivers' Syndrome is what some are calling it. The arguments for and against identifying our stress as a "Mental Illness" are the familiar arguments, "legitimatize/stigmatize." Proponents say that idenitfying it in this way will make it more real, make it legitimate and provide ways for those suffering from it to realize they need help, to find pathways to the help they need. Opponents say that naming it will label those suffering with it and push them deeper into the isolation that accerbates the suffering they experience. I'm not sure I want to write about identifying or naming, about stimatizing or legitimizing, about opponents or proponents. Such arguments don't interest me the way they may have once.



I do know, for me, this is a beginning, writing to Mary in this format. Last year, I worked with a writing coach for a while. She suggested that I write my letters to Mary and put them aside to sort through and edit, to review and revisit later. That approach has not been very helpful.

So, I'll begin anew here, to make my contributions here as letters to Mary - for myself. And we'll see how that goes.



welcome to our journey,
jes

Free Association after Respite

Tonight Mom comes home from her 4-day respite stay. I got a phone call this morning at 6:45 from the nursing home. They noticed her right ankle was swollen and red. It's not unusual for Mom to have edema in her ankles, especially the right one. We put her feet up on a foam wedge overnight, but we don't ask the nursing home to do it. When we got to the facility to take Mom to day care, the ankle was bright red, which is not so common, and it was hot. She might have cellulitis, the nurse suggested, and the day care nurse seconded that guess. We'll watch it for a few days, and if necessary, contact her doctor for an antibiotic.

Other than the ankle situation, Mom seemed more alert than she did yesterday morning. We also found out that yesterday morning they gave her a shower, which would explain her lethargy. The whole shower/bath phenomenon wears Mom out. We give her a sponge bath every morning, which is not so hard on her, but we have the day care give her a tub bath once a week. It's a special tub where she transfers from her wheel chair to a chair that slides into the tub, and fills up to near her shoulders, I think. So it's more vertical than horizontal. It doesn't help that Mom has always been slightly afraid of water, especially any water that gets in her face, like a shower.

Mom's fear of water is one of the best indicators of what she would do for her children. Until I was in second grade, we lived across the street from a YW, so Mom dutifully took us to swim classes there, but did not participate herself. We would spend a week or so every summer at my paternal grandmother's cottage on Lake Bemidji in Minnesota. It was a wonderful place on a beautiful lake (my grandmother was a different story, maybe for another time), and Dad loved going out fishing with Grandma in the boat; we kids would often go along, though Mom usually opted out. But nothing kept us from swimming and playing in the lake as much as possible. Mom would often sit on the deck to supervise, and on occasion would venture in the water herself.

It took me years to recognize how both the swimming and the boat rides required extra sacrifice on her part. Her fear of the water made those experiences unpleasant at best for her. Eventually, Mom even took her own swimming lessons at the YW, so she could feel better about watching us in the lake and in hotel swimming pools on our longer family vacations. In my mind, that was a true act of motherly selflessness, confronting her fear in order to take better care of us. She never complained about her fear of water, and would just mention it once in a while if we would nag her about joining us for a swim or a boat ride. We were all water-loving tadpoles, and in the self-absorbed way of children, couldn't seem to retain awareness of Mom's aversion to water.

One more story about Mom's fear of water. After Dad died (1991), we would all do our things to give her some social outlets. One time my brother John went to visit her, and took her to the movies. Mom didn't particularly like movies either, or at least, she was very particular about which movies she liked. She loved On Golden Pond, for example, which did not fit with her water phobia. But when John took her to see Titanic, that was too much. She told me the next time we talked that she didn't really like it much, especially the scenes with all the people in the water after the wreck. I still have never seen Titanic, but have seen bits and pieces, including the part she referred to. It would never have occurred to me that the film would cause her a problem. To this day, I don't know if John knows those scenes bothered her.

Writing for Health

Some new evidence that writing is good for your health: http://www.utne.com/Some-Writing-Each-Day-Keeps-the-Doctor-Away.aspx

For this very reason, and because writing once a week seems a bit paltrey, I am going to try to write more often, even if the posts are shorter.

On a related note, I'm a little concerned that my last post sounded like whining. But today, I'm tired. Mom goes into respite after day care today. She'll be in through Tuesday, though on Monday we pick her up, take her to day care, and then take her back to the nursing home after day care. On Tuesday we check her out of the nursing home, take her to day care, and then bring her home afterward. It's not much, but it means we can go out to dinner tonight, we can do whatever we want on Saturday and Sunday, including the Art Crawl on Saturday night and Jeanne's birthday celebration on Sunday. I'm on Spring Break next week, so we'll have the days while Mom is at day care to do what we want. And we get to SLEEP. These are all things we either can't do, or are constrained in doing when Mom is home.

In arranging the respite with Mom's doctor, I was leaving a voice mail and completely blanked on my cell phone number. When she called back, the doctor affirmed that if I can't even remember my cell phone number, I must really need the break that respite provides.

I also realized in thinking about my previous post that I hadn't really said anything about Mom. She is, as one of my stepdaughters said, "a tank." Other than the Alzheimer's and some arthritis, she is completely healthy, and very strong. Yet it is harder and harder for her to walk or stand, even with assistance (she can do neither on her own), because her brain can no longer send the proper signals. She was taken off hospice care after a year of mental degeneration, but no significant physical degeneration. They said there was simply no evidence that she would die in the next 6 months. I think she doesn't know how to let go; I can't believe she still wants to be alive, given her condition. And I don't know what to do to help her.

Being Tired

It's late Sunday morning. Mom is napping, so I get a chance for what I hope to be a once-a-week blog. I'm tired. Jeanne and I are tired all the time. Though Mom goes to bed early--around 7:00--we don't eat supper until she's in bed. We watch maybe an hour of tv, then clean up, take Cleo out one last time, and try to be in bed between 9 & 10. Last night we rented Changeling, which at 140 minutes, kept us up later than usual.

Every night we get up sometime between 1 & 3 a.m. in order to change and toilet Mom. Even with the super-duper Depends we rig up for her, if we don't change her once a night, she and the bed will be soaked by the morning. This process usually takes a half hour, and then we often end up talking before going back to sleep. It's one of the few times we're not doing something else, and besides, there just always seems to be more to talk about at 2 a.m. than at 2 p.m.

So last night we talked for another hour after taking care of Mom. Then I went right back to sleep, as usual; it's never that easy for Jeanne. On the weekends, instead of getting up at 6, as we do during the week, we sleep in until sometime between 7 & 8. We skip our showers, and just go downstairs and get Mom up.

This nightly sleep interruption takes a toll on us. The reason I chose this topic to write on today is because here it is, the middle of the day, and I just want to rest my head, which feels like it weighs 40 pounds. Today we'll have time to take a nap later, but napping when Mom does means not getting our own work or leisure done during that time. When she's awake, we're feeding her or toileting her or trying to keep her awake so she'll sleep at night. There's always a trade-off. Simply put, caregiving means never getting enough sleep.

And while that's true for parents of infants as well, slowly that continues to improve. As the child grows, so does hope that a full night's sleep will one day be possible. For me, I can only hope for a full night's sleep for those few days a month we put her in respite care (temporary nursing home care), and when she dies. It will not get better before then.

And now it's time to get Mom up from her nap.

How it began

Mom had been diagnosed with Alzheimer's for a few years before we began being concerned. First off, she was never completely clear about how definitive the diagnosis was. The doctor never called her back, she said, so she called the office and spoke with the nurse. Secondly, she seemed to be have more mild memory problems than the kinds of symptoms I associated with Alzheimer's. "You probably do have some type of dementia," I would tell her, "but I don't think it's Alzheimer's." My brother John made her stop driving after he learned about her accident. I wasn't so sure; I'd seen the police report stating it was not her fault. Then we found out about the previous accident she hadn't told us about. A letter from her insurer came saying they were discontinuing her insurance. A friend from church helped her sell the car, and John showed her how to ride a local cab service around town.

Of her 4 children, none of us lived in town. My oldest brother, Paul, lived the closest, just about 20-30 minutes away. John and I each lived 2 hours (in different directions) from Green Bay, and my sister Kathy lived in Seattle. Dad had died 13 years earlier. Pretty soon Jeanne and I were driving up every other weekend to take her shopping, pay her bills, and make meals to put in the freezer. Meals on Wheels delivered her a lunch on the weekdays. Eventually, the siblings agreed that we needed a family meeting to decide what to do, since it was quickly becoming clear that she could no longer live alone. In the meantime, Jeanne and I had been asking her if she would be willing to come live with us. She always said that no, she didn't want to be a bother, and she would go to Woodside, the Lutheran nursing home Dad died in. She didn't want to live in Milwaukee. Shortly before the family meeting, we tried again.

"Mom, what if we bought a house outside of Milwaukee? We could get a dog!" Mom loved animals, but refused to get another dog after her beloved Westie, Touzie, died years before. There was too much pain in losing a pet, and she was concerned about being able to continue to care for a dog. This time she agreed.

The family meeting was in January, 2004. Maybe I'll go over the details some other time, but the outcome was that all agreed that Mom would come live with Jeanne and me, and that we had better hurry up and find a house.

Mom spent Easter weekend that year with John and his wife Vicki. He called me that weekend, saying that he would not let her go back and live in her condo alone even for another week. We'd actually found a house already, had our offer accepted, and the closing date was near. But we still lived in our warehouse loft apartment. We weren't ready for Mom yet, but we made it happen. She lived with us at the apartment until we were able to move our stuff and her stuff from her condo.

That was just about 5 years ago. This blog is meant to be my way of continuing to process all that caregiving entails. The rigors and stress of careiving are not something I could ever have anticipated. Would I have agreed to do it if I'd known? That's a question I can't answer.