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.