Merrimac

It is Memorial Day weekend, and Jeanne, Cleo and I are spending it at a vacation rental condo in Merrimac, WI, just outside of Baraboo. We've stayed here a few times before, and though we never brought Mom here, memories of her are redolent. This is where we used to come as respite from Mom. It started with weekends, and we would have Jeanne's mom stay with my mom. We picked this place because it was not too far from home, maybe 2 hours, and because we could bring Cleo.

The first weekend we came here to stay, Ella, Jeanne's mom, came to our house, and we were showing her where stuff was, and just talking. Mom was still mobile, and somewhat functional. Her bedroom door was closed. All of a sudden we heard a bang. We went running into Mom's room, and she was sitting on the floor, dazed. She had been dressing herself (we laid her clothes out the night before), went to sit on a chair, and the chair scooted out from under her, hitting the wall as she hit the floor. In addition, she had her bra on over her shirt, a clear sign to us that the Alzheimer's was progressing. Her eyes were open, but she was out of it. We got her to lay down, and I called 911.

Before the paramedics arrived, she snapped out of whatever state she was in. She would not remain seated on the floor, so we helped her up and into a chair in the living room. When the paramedics got there, they ran all sorts of tests on her blood, her oxygen level, sugar level, and I don't remember what all. Her levels were better than most people's. The paramedics said they could take her to the hospital for more tests, but we decided against it. Then we had to debate whether to go for the weekend or not. Ella, who is also a nurse's aide, was still willing to stay with her, and Mom seemed just fine. So after much back and forth, we decided to go. Mom and Ella were fine for the weekend, but I immediately came down with such a bad cold that I slept most of the time we were here. I think it was the first time since Mom had come to live with us that I let myself relax, and with my defenses down, the cold attacked with a vengeance. Who knew how long it had been waiting for that opportunity?

The next time we came here for a weekend, Mom had, of course, degenerated some more, and Ella ended up calling us multiple times with questions and problems. We were on our way home at the end of the weekend, but stopped in Madison, and hoped to spend some time with Jerri and Dave and the girls, who had taken a weekend there. Ella called again, and this time we had to cut our visit short and come home. Mom had figured out how to "work" Ella, or maybe it was how to play her. Anyway, she was becoming too difficult for Ella to manage, so we came home.

The next time we were scheduled to come to Merrimac, we actually put Mom in a respite center for 2 weeks. The first day, we were going to Spring Green with friends to see a play, then we would come to Merrimac for a week, then spend a week at home. On that first day, the morning of which we took Mom to the respite center, we were driving home after the play when I got a phone call. It was the respite center Director of Nursing, who had assured us on our pre-stay tour that they would take good care of Mom. Mom had fallen and broken 4 ribs. I was furious. How could they have let this happen? I'm pretty sure we had taken all the steps ahead of time to check this place out. They had a well-regarded adult day care program, and had just started the respite program. Unfortunately, they had not worked all the kinks out yet.

We had informed them that Mom was at high risk of falling, so they had one of the "safe" rooms reserved for her. But the previous tenant's family did not come pick him up when they were supposed to, so instead of moving him, they temporarily put Mom in a different room. There was an electric eye motion detector over the bed she was resting in, but somehow she got out of bed without setting it off. I don't know why she fell, but she did, and apparently hit her ribs on the bed frame. An aide went in to check her at one point, and found her lying on the floor. They called 911 and sent her to the hospital, who at first thought she hadn't broken anything. The next day they called to inform us that on a second reading of her xrays, they could see she had broken 4 ribs.

But that night of the day she fell, Jeanne and I went over to the center as soon as we got home. I believe it was around 10 p.m. when we had a meeting with the director, director of nursing, and a few others at the center. They heard all our frustrations and disappointments, and they apologized and explained as best they could what happened. Tears were shed on both sides, more on theirs, actually. Ultimately, Jeanne and I decided that we really needed the break, and we would let Mom stay there the rest of the 2 weeks. But we cancelled our stay here in Merrimac, and just stayed home, so we were close should anything else happen. Which it did, and on the day we tried to take a day trip to Watertown. Another on-the-road phone call from the center. Mom's lips were horribly swollen. I had them call Mom's doctor and ask him what he thought. He thought they should send her to the ER and have her checked out. So I agreed, and turned the car around.

She was at the ER, only had been sent there with just a jacket on, no shirt underneath. The swelling was going down. Everyone kept asking if she was on a specific medication which I don't recall right now. She wasn't. They kept insisting that the type of swelling she had was only seen in patients with an allergic reaction to this specific med. My suspicion is that somehow they gave her someone else's meds. After those two weeks, we never went back that center, except to meet once again with the top administrators, who agreed to pay for the condo rental, since we cancelled too late for a refund. The owner wasn't going to make us pay, but it wasn't her fault, and she would have been able to rent to condo to someone else, as it was the July 4th week, so we insisted the center pay us so we could pay the condo owner.

Eventually, with Mom in a different respite facility, we tried to come up here one other weekend. I don't even remember what happened with Mom that weekend, but we again had to cancel. The owner said she would keep our deposit, and we should come when we no longer had to worry about something coming up with Mom that would force us to cancel. That was over 2 years ago, and we are finally here.

So yes, though Mom was never here, this vacation space is overflowing with her memory. Jeanne and I decided today that we probably won't be coming back after this weekend.

Now or Never

Kiana, Mom, and Avri

Dec. 2009

I was ready to write again the day after my last post. Guess what? It didn't happen. I'm always waiting for the correct amount of time and energy, never quite figuring out that I need to write what I can when I can, and let the rest fall by the wayside. Let's see, I was going to write about the visit to the neurologist, the last two respite stays for Mom, Christmas, and I don't even remember what else. My brother's visit. Oh, yeah, getting fired from daycare over a parking dispute. Mom is now home with us 24/7. I hope to be able to write about some of this at some point.

We brought Mom home from respite today. When we checked her in on Thursday, they weighed her. She was down to 78 pounds, fully dressed, including shoes. She still eats and drinks, but less and less all the time. The neurologist says she isn't metabolizing everything she is eating. She sleeps most of the time, which does make having her home all the time a little easier.

The picture above was actually taken a week before Christmas. Jerri and Dave were taking the girls to Florida for their first DisneyWorld visit, and didn't want them to leave without saying goodbye to Mary. There was some concern that she wouldn't make it to Christmas. You can see from the picture that she was momentarily awake and alert. She had already tuned back out before the next picture.

Anyway, when Mom came home from her December respite, she had deteriorated significantly, and we were no longer sure she would make it to Christmas. Jerri and Dave knew Kiana in particular would be upset if she didn't get a chance to say goodbye, and I wanted a last picture. Well, as usual, Mom rebounded, and though she's still losing weight, she is also still here, and shows no signs of dying this week. That's about all we can predict.

And about all I have time to write tonight. As my subject line says, my new approach to blogging (for today at least) is now or never. So this isn't much, but it's better than nothing. I hope to write more again soon.

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.

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!

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.