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.