Saturday, July 23, 2005
I hope...
...it rains tonight. A long, hard, noisy, saturating rain. And tomorrow.
It's official: When I have a bad day emotionally...
...my mother has a bad day physically.
It was a little thing that pushed me over the edge and this time the edge, for most of the day, was strictly internal. I was very careful and, I thought, successful in keeping my bad mood from my mother. The little thing was: I needed rain, today, really, really bad. Worse than yesterday. I was sure, too, it was going to rain. First, this morning. The sky was dark and the air fairly cool all morning. But I watched that storm cell pass to the southwest, both through our windows and on the Local on the 8's, without releasing a drop over us. I died a little inside. Started thinking about Seattle. How, even when the perfect summer days pissed me off with their overabundance of sunlight, I always knew it would rain soon because, well, that's what it does in Seattle. It always rains soon. Even during its 2 months of perfect summer it rains here and there.
Mom awoke at 1130 on the nose while I was indulging in my backlash fantasy about Seattle. I stopped fantasizing and swung into my mother's day, somewhat disappointed about the lack of rain but feeling pretty good. Today, as you know, was Dog Show day. That means shows about dog breeds leading up to the main show. There was also a double play of Corwin's Quest, which Mom loves, immediately preceding the breed shows. I knew it was going to be difficult to break up her run of shows. I also knew I had the best chance of keeping her up without a nap if I didn't pester her. I knew, too, her body could probably use a one day's rest from what I've been insisting on putting it through, especially since she was complaint-walking as though her knee and back were bothering her. When I asked her, she confirmed that I was right. I responded that we'd rest from exercising today. She was on her feet walking to and from the bathroom every two hours and her energy level was high enough early in the evening for her to insist on helping me with dinner, although everything was cut and marinating and, well, when you're fixing stir fry with ancho chile sauce there isn't much that the help can do.
Then, during the first hour of The Dog Show it happened again. The sky blackened. The air stilled. The thunderheads gathered. The air cooled yet again. I stood in the living room halfway between the television (I also enjoy watching the dogs) and the front windows willing the rain this way. Again, a provocative storm passed us just to the southwest, so close I could see the deluge over the Bradshaws. "It's probably raining at [my friend's house who lives in the direction I was looking] maybe two miles to the south of us," I thought. For a half hour I stared at the just out of reach storm then watched it break up and blow to the west. I couldn't help myself. I sobbed quietly. I was sure my mother didn't see.
I turned back to the dogs and suggested that we make a list of those dogs we thought we might like to have as a part of our family. My mother was enthusiastic. The list is as follows, in order of the breeds' appearance on the show:
Still, I thought I kept a pretty good lid on my feelings. I kept up my outward good humor toward my mother. I snapped at her only once (which is unusual when I'm feeling desperate) regarding dinner. She, once again, claimed she couldn't eat anymore when I'd given her a smaller than usual portion and coached her to eat it before her appestat turned off. A part of me was enjoying the dogs and the fantasy of us having one in our family, and that's the part I was sure I was keeping toward her during the entire evening, while I was internally wishing I was somewhere else, doing something else.
A movie on The Hallmark Channel in which my mother had expressed interest immediately followed the dogs. During the movie (I can't remember what it was) I cleaned the kitchen, finished evening chores and carried on light conversation with my mother during the commercials, all the while continuing my desperate thinking on that other, obstinate track. We had only one minor altercation: at 2120 my mother thought the movie was over and decided to go to bed. I had a little trouble convincing her that she'd miss part of the movie if she retired. As well, I told her that I'd prefer it if she remained up until 2200, since she awoke in the morning at 1130 and even though I knew I wasn't going to be able to keep her up until then, tonight, since she hadn't had a nap today (amazing, actually, that she never suggested napping), I thought she needed to stay up a little longer. It wasn't a major disagreement, though. Once her movie restarted she was glad that I'd warned her that she'd miss part of what she was watching.
Because her systolic blood pressure had been in the 130's at dinner I decided to take it just before she retired in case she might need a third lisinopril. I was alarmed to discover that her blood pressure was very high, 170s/70's. She'd been wearing slippers all day, since it was cooler than usual even though we weren't running the window a/c in the living room. I'd noticed in the bathroom earlier that her belly looked a bit swollen (although she hadn't coughed at all this evening) and immediately removed her slippers. Sure enough, her feet were very pudgy. I asked her to remain on the edge of her bed for a minute or two so I could take her blood pressure again. In the meantime, I retrieved a lisinopril tablet and split a furosemide in half, figuring that if her blood pressure was essentially the same I'd better give her 2.5 mg lisinopril and 20 mg furosemide. It was. I did. I also told her that, apparently, from now on, we should probably exercise every day in some way, both walkering and the therapy exercises. "It looks," I said, "as though a one day rest isn't a good idea anymore."
After I kissed her goodnight and left her room I realized that despite my efforts to keep my emotional desperation under wraps and my assumption that I'd done a passable job, I hadn't. She'd somehow detected my dolorous mood and reacted to it physically during the evening hours.
I'm not sure what lesson I'll take from this. Obviously, as is true in all relationships based on deep love, the internal fretting of one person in the relationship acutely affects the other person. If the other person's health is sensitive, as my mother's is, the reaction can include obvious physical reverberations. This is no surprise to me. I learned my first lesson in this some time ago. I know better, though, from tonight's experience, than to mask what I'm going through and assume I'm doing her a favor. I'll be thinking about this for awhile, though. Initial consideration seems to indicate that we're both better off if I'm upfront about what I'm experiencing. I get over it quickly and my mother isn't left to react to disturbing signals with physical debilitation. Humor will help, of course. We're both experienced in this.
But, anyway, tonight held a very pointed lesson for me in how my bouts of emotional desperation affect my mother. It's time to apply myself consciously to ways to alleviate this problem that are appropriate to her, me and our situation.
I'll be recording her stats from today in the morning. I'm tired, now. Time for me to sleep off my doldrums.
Later.
It was a little thing that pushed me over the edge and this time the edge, for most of the day, was strictly internal. I was very careful and, I thought, successful in keeping my bad mood from my mother. The little thing was: I needed rain, today, really, really bad. Worse than yesterday. I was sure, too, it was going to rain. First, this morning. The sky was dark and the air fairly cool all morning. But I watched that storm cell pass to the southwest, both through our windows and on the Local on the 8's, without releasing a drop over us. I died a little inside. Started thinking about Seattle. How, even when the perfect summer days pissed me off with their overabundance of sunlight, I always knew it would rain soon because, well, that's what it does in Seattle. It always rains soon. Even during its 2 months of perfect summer it rains here and there.
Mom awoke at 1130 on the nose while I was indulging in my backlash fantasy about Seattle. I stopped fantasizing and swung into my mother's day, somewhat disappointed about the lack of rain but feeling pretty good. Today, as you know, was Dog Show day. That means shows about dog breeds leading up to the main show. There was also a double play of Corwin's Quest, which Mom loves, immediately preceding the breed shows. I knew it was going to be difficult to break up her run of shows. I also knew I had the best chance of keeping her up without a nap if I didn't pester her. I knew, too, her body could probably use a one day's rest from what I've been insisting on putting it through, especially since she was complaint-walking as though her knee and back were bothering her. When I asked her, she confirmed that I was right. I responded that we'd rest from exercising today. She was on her feet walking to and from the bathroom every two hours and her energy level was high enough early in the evening for her to insist on helping me with dinner, although everything was cut and marinating and, well, when you're fixing stir fry with ancho chile sauce there isn't much that the help can do.
Then, during the first hour of The Dog Show it happened again. The sky blackened. The air stilled. The thunderheads gathered. The air cooled yet again. I stood in the living room halfway between the television (I also enjoy watching the dogs) and the front windows willing the rain this way. Again, a provocative storm passed us just to the southwest, so close I could see the deluge over the Bradshaws. "It's probably raining at [my friend's house who lives in the direction I was looking] maybe two miles to the south of us," I thought. For a half hour I stared at the just out of reach storm then watched it break up and blow to the west. I couldn't help myself. I sobbed quietly. I was sure my mother didn't see.
I turned back to the dogs and suggested that we make a list of those dogs we thought we might like to have as a part of our family. My mother was enthusiastic. The list is as follows, in order of the breeds' appearance on the show:
- Airedale
- Staffordshire Bull Terrier
- Chow Chow
- Shiba Inu
- Tibetan Spaniel
- Brussels Griffon
- Irish Wolfhound
- Otterhound
- Pharaoh Hound
- Basenji
- Newfoundland (of course)
- Tibetan Mastiff
- Rottweiler
- Akita
- Chesapeake Bay Retriever
- Wirehaired Pointing Griffon
Still, I thought I kept a pretty good lid on my feelings. I kept up my outward good humor toward my mother. I snapped at her only once (which is unusual when I'm feeling desperate) regarding dinner. She, once again, claimed she couldn't eat anymore when I'd given her a smaller than usual portion and coached her to eat it before her appestat turned off. A part of me was enjoying the dogs and the fantasy of us having one in our family, and that's the part I was sure I was keeping toward her during the entire evening, while I was internally wishing I was somewhere else, doing something else.
A movie on The Hallmark Channel in which my mother had expressed interest immediately followed the dogs. During the movie (I can't remember what it was) I cleaned the kitchen, finished evening chores and carried on light conversation with my mother during the commercials, all the while continuing my desperate thinking on that other, obstinate track. We had only one minor altercation: at 2120 my mother thought the movie was over and decided to go to bed. I had a little trouble convincing her that she'd miss part of the movie if she retired. As well, I told her that I'd prefer it if she remained up until 2200, since she awoke in the morning at 1130 and even though I knew I wasn't going to be able to keep her up until then, tonight, since she hadn't had a nap today (amazing, actually, that she never suggested napping), I thought she needed to stay up a little longer. It wasn't a major disagreement, though. Once her movie restarted she was glad that I'd warned her that she'd miss part of what she was watching.
Because her systolic blood pressure had been in the 130's at dinner I decided to take it just before she retired in case she might need a third lisinopril. I was alarmed to discover that her blood pressure was very high, 170s/70's. She'd been wearing slippers all day, since it was cooler than usual even though we weren't running the window a/c in the living room. I'd noticed in the bathroom earlier that her belly looked a bit swollen (although she hadn't coughed at all this evening) and immediately removed her slippers. Sure enough, her feet were very pudgy. I asked her to remain on the edge of her bed for a minute or two so I could take her blood pressure again. In the meantime, I retrieved a lisinopril tablet and split a furosemide in half, figuring that if her blood pressure was essentially the same I'd better give her 2.5 mg lisinopril and 20 mg furosemide. It was. I did. I also told her that, apparently, from now on, we should probably exercise every day in some way, both walkering and the therapy exercises. "It looks," I said, "as though a one day rest isn't a good idea anymore."
After I kissed her goodnight and left her room I realized that despite my efforts to keep my emotional desperation under wraps and my assumption that I'd done a passable job, I hadn't. She'd somehow detected my dolorous mood and reacted to it physically during the evening hours.
I'm not sure what lesson I'll take from this. Obviously, as is true in all relationships based on deep love, the internal fretting of one person in the relationship acutely affects the other person. If the other person's health is sensitive, as my mother's is, the reaction can include obvious physical reverberations. This is no surprise to me. I learned my first lesson in this some time ago. I know better, though, from tonight's experience, than to mask what I'm going through and assume I'm doing her a favor. I'll be thinking about this for awhile, though. Initial consideration seems to indicate that we're both better off if I'm upfront about what I'm experiencing. I get over it quickly and my mother isn't left to react to disturbing signals with physical debilitation. Humor will help, of course. We're both experienced in this.
But, anyway, tonight held a very pointed lesson for me in how my bouts of emotional desperation affect my mother. It's time to apply myself consciously to ways to alleviate this problem that are appropriate to her, me and our situation.
I'll be recording her stats from today in the morning. I'm tired, now. Time for me to sleep off my doldrums.
Later.
Today is the...
...Dog Show. Last night, when we were talking about it during one of the many commercials for it on Animal Planet, Mom remembered (bizarre, sometimes, the things she remembers) that the show usually features programs ahead of time about a couple breeds of dogs. I just checked and, sure enough, there are some of these preceding the competition, two of which are about dogs I would consider for us other than a Newfoundland: Great Danes and Greyhounds. So we'll be watching those, too. Today might be a good day to give Mom an exercise rest since she's been working so hard over the last two days. I'll let her sleep her full 12 hours, until 1130, and we'll work our day around the dog show. There's a good chance she won't take a nap today since she'll be busy watching the dogs go by.
There.
That looks better.
I can't sleep...
...so I decided to fool around with my template a little. I've received two mentions, so far, one from one of my sisters, that the three permanent posts to another one of my sisters caused the two to believe that I hadn't posted since May 11, 2005, despite the fact that I put a note in my description that the lastest post begins after those three posts. So I got rid of those posts, even though I said in the posts I wasn't going to until I'd heard from that sister and I haven't heard from her. They don't seem to be helping, I don't get that many visitors anyway and I don't want to confuse those I do get so, what the hell, into the trash bin they go.
I've got some maintenance to run on a few other sites, maybe some posting, who knows. I might be back here, too, maybe...
...later.
I've got some maintenance to run on a few other sites, maybe some posting, who knows. I might be back here, too, maybe...
...later.
Friday, July 22, 2005
Mom started into bed...
...at 2300 this evening. I didn't have a problem keeping her up. One of the cable channels was showing Mrs. Doubtfire, one of her favorite movies and one I love watching with her because it tickles her so.
Ah. It's 2330 and her light just went off (she reads in bed every night for awhile). Although I normally count down her 12 hours night sleep from when she turns off her light, tomorrow, I think, I'll try getting her up at 1100 anyway. Sort of edge her toward a somewhat shorter night. We'll see how far I can get with that.
Her exercise session went well this evening, much better than her walkering earlier today. She protested both but did them anyway. Her knee bothered her some this afternoon after the walkering session. I need to pick up a new elastic knee brace for her tomorrow. This one's becoming ragged and slack.
Although I mentioned at the exercise session write up that I've come up with a couple of ideas to help improve her walkering style so her back doesn't hurt I'm also considering that she might be better off with a cane. As she was sitting on the edge of her bed and we were indulging in our usual bedtime chat I mentioned that, although I know she isn't interested in using either a walker or a cane, the reality is that when she is out she'll have to be using one or the other for the rest of her life.
"I think that time is coming," she agreed.
"I think it's already here," I said, gently.
"I suppose you're right." I just love her wiggle responses!
I asked her what her preference would be.
I wasn't surprised when she said, "A cane".
I tend to agree that she'd probably "work" better, walking, with a cane. We talked about different styles. Of reminded her of the aluminum cane we saw an Ancient Woman using in a parking lot about a year ago with a clawed bottom. To my surprise, she remembered it. That might work for her.
There is, of course, the problem of her oxygen. With a cane either we'd have to see if there is a back pack that would work for her, considering her lack of strength, or I'd have to be right there with her, oxygen slung over my shoulder. As well, she can't sit on a cane when she's tired. But I cart the wheelchair everywhere we go when she's with me and there's no reason why I couldn'd also cart the walker. Yet another aspect is that, normally, the more she moves the more her aerobic ability improves. A couple of times last fall here in Prescott we headed out on errand trips and forgot the oxygen. She didn't have a problem. So we'll see how it goes. On Monday I'll drop by our oxygen supplier, put the question to them and see what they have to offer. Since both her wheelchair and her walker are gifts from friends whose elder people died, we have not yet used her Medicare allowance of either a wheelchair, a walker or a cane. It would be nice, I think, to have all three.
Well, it's been a good day, although sticky. The monsoon has been officially declared and the thunderheads form and dissipate, yet we're not getting much rain up here; an occasional attempt at a shower but that's all. For me it's frustrating. The humidity is seductive and I'm rain ready. I even caught Mom saying today, "I wish it would just rain and get it over with!"
This weekend I'm hoping to be able to settle back and catch up on some of the essays over at the essay site that have been waiting for a finish. That would be nice. We'll see.
Later.
Ah. It's 2330 and her light just went off (she reads in bed every night for awhile). Although I normally count down her 12 hours night sleep from when she turns off her light, tomorrow, I think, I'll try getting her up at 1100 anyway. Sort of edge her toward a somewhat shorter night. We'll see how far I can get with that.
Her exercise session went well this evening, much better than her walkering earlier today. She protested both but did them anyway. Her knee bothered her some this afternoon after the walkering session. I need to pick up a new elastic knee brace for her tomorrow. This one's becoming ragged and slack.
Although I mentioned at the exercise session write up that I've come up with a couple of ideas to help improve her walkering style so her back doesn't hurt I'm also considering that she might be better off with a cane. As she was sitting on the edge of her bed and we were indulging in our usual bedtime chat I mentioned that, although I know she isn't interested in using either a walker or a cane, the reality is that when she is out she'll have to be using one or the other for the rest of her life.
"I think that time is coming," she agreed.
"I think it's already here," I said, gently.
"I suppose you're right." I just love her wiggle responses!
I asked her what her preference would be.
I wasn't surprised when she said, "A cane".
I tend to agree that she'd probably "work" better, walking, with a cane. We talked about different styles. Of reminded her of the aluminum cane we saw an Ancient Woman using in a parking lot about a year ago with a clawed bottom. To my surprise, she remembered it. That might work for her.
There is, of course, the problem of her oxygen. With a cane either we'd have to see if there is a back pack that would work for her, considering her lack of strength, or I'd have to be right there with her, oxygen slung over my shoulder. As well, she can't sit on a cane when she's tired. But I cart the wheelchair everywhere we go when she's with me and there's no reason why I couldn'd also cart the walker. Yet another aspect is that, normally, the more she moves the more her aerobic ability improves. A couple of times last fall here in Prescott we headed out on errand trips and forgot the oxygen. She didn't have a problem. So we'll see how it goes. On Monday I'll drop by our oxygen supplier, put the question to them and see what they have to offer. Since both her wheelchair and her walker are gifts from friends whose elder people died, we have not yet used her Medicare allowance of either a wheelchair, a walker or a cane. It would be nice, I think, to have all three.
Well, it's been a good day, although sticky. The monsoon has been officially declared and the thunderheads form and dissipate, yet we're not getting much rain up here; an occasional attempt at a shower but that's all. For me it's frustrating. The humidity is seductive and I'm rain ready. I even caught Mom saying today, "I wish it would just rain and get it over with!"
This weekend I'm hoping to be able to settle back and catch up on some of the essays over at the essay site that have been waiting for a finish. That would be nice. We'll see.
Later.
Thursday, July 21, 2005
We performed therapy exercises again, today.
Mom resisted and I insisted and we did it. Afterwards I announced that we were going to do them everyday, to whatever extent we could, from now on. As well, tomorrow we'll begin practicing walkering, again. It's very humid and muggy and hot outside so I told her we'd practice in here: Back and forth in the living room and the hall, including practice approaching stairs, having her think about what to do with her walker when she gets to the stairs in order to negotiate them then I'd carry the walker up the steps and we'd continue. "Five to ten minutes, tomorrow morning, after breakfast, before you get involved with anything else."
Her face showed mild disapproval but I told her, "Look, woman. When you were falling all over your left side at the Skilled Nursing Facility and as weak as a kitten you were doing two exercise therapy sessions a day, including Sunday, one walkering session, and in a week you were getting out of bed and wandering the halls on your own [much to the attendant's consternation]. You are nowhere near as weak as you were then. You can do this."
I made this decision primarily because of the recent scary episodes of CHF we've endured. It makes sense to me that if I get her moving the episodes of feet and abdominal edema should subside. Sure enough, after tonight's exercise session, her feet didn't even swell as much as they normally do in the evening.
"Mom," I said, "do you agree with me that if there's a way to fix or avoid something without medicine, that's the better way?"
"Well, yes. Of course."
"Well, I think this is the way we can avoid your episodes of CHF. They've been alarmingly frequent, lately, and I'm not interested in pilling you up and anxiously trying to make sure you don't have a blood pressure crash or that I don't fill you so full of fluids that I precipitate a CHF episode. Does that make sense to you?"
"Well, I suppose so."
"Look at it this way. We've got nothing better to do, so let's try this."
"I suppose you're right."
All her wily little language escape pods lined up to take her out of the fray but I brushed all of them aside. So, we're going to try it again. Yet again.
Sometimes, it's not just the Ancient One who takes two steps forward and one back, it's the caregiver, too.
Anyway, if you're interested, here's how today's session went:
Today's Exercise Session
Anyway, it's getting late. Mom went to bed at 2300 so tomorrow I'll be getting her up no later than 1100. However, considering what usually happens when she starts moving, it's entirely possible she'll be up earlier. That would be nice.
Later.
Her face showed mild disapproval but I told her, "Look, woman. When you were falling all over your left side at the Skilled Nursing Facility and as weak as a kitten you were doing two exercise therapy sessions a day, including Sunday, one walkering session, and in a week you were getting out of bed and wandering the halls on your own [much to the attendant's consternation]. You are nowhere near as weak as you were then. You can do this."
I made this decision primarily because of the recent scary episodes of CHF we've endured. It makes sense to me that if I get her moving the episodes of feet and abdominal edema should subside. Sure enough, after tonight's exercise session, her feet didn't even swell as much as they normally do in the evening.
"Mom," I said, "do you agree with me that if there's a way to fix or avoid something without medicine, that's the better way?"
"Well, yes. Of course."
"Well, I think this is the way we can avoid your episodes of CHF. They've been alarmingly frequent, lately, and I'm not interested in pilling you up and anxiously trying to make sure you don't have a blood pressure crash or that I don't fill you so full of fluids that I precipitate a CHF episode. Does that make sense to you?"
"Well, I suppose so."
"Look at it this way. We've got nothing better to do, so let's try this."
"I suppose you're right."
All her wily little language escape pods lined up to take her out of the fray but I brushed all of them aside. So, we're going to try it again. Yet again.
Sometimes, it's not just the Ancient One who takes two steps forward and one back, it's the caregiver, too.
Anyway, if you're interested, here's how today's session went:
Today's Exercise Session
Anyway, it's getting late. Mom went to bed at 2300 so tomorrow I'll be getting her up no later than 1100. However, considering what usually happens when she starts moving, it's entirely possible she'll be up earlier. That would be nice.
Later.
Wednesday, July 20, 2005
I notice it's 2300...
...and her light is still on. She's reading. As soon as it goes out I'll count down her 12 hours sleep from then. And I'll be going to bed immediately. I'm tired and cranky. It was hard for me to take her fumbling and her refusal to move today. She was good about "only" a two hour nap. She was in the bathroom when I headed in to awaken her.
I know I seemed to take easily her declaration, yesterday, that she didn't want to get out anymore or move much anymore, but I told her tonight that I can't accept that if it's going to mean that I have to negotiate more CHF episodes. I don't know. I forgot to mention: During one of those week or so silences in my journaling, back there, not too long ago, I tried dropping her off at the elder day care center in the town east of us (there doesn't seem to be one here, anymore) for a couple of hours. I'd talked to them, visited the place before hand, took her prepared with both walker and wheel chair. It seemed like a fairly lively place although there were a few Ancient Ones sitting around the edges of the day room snoozing in their wheelchairs. There were, though, other activities going on, including a sing-along to records and some crafts at some of the community tables. Mom went in (bless her pride) walkering. She hadn't wanted to go but I remembered that editorial in Caregiver.com regarding how good Adult Day Care could be for an Ancient One and insisted on taking her while I did some shopping. She's never been particularly social but she loves to people watch and I figured, well, maybe the overseers there, who seemed bright, competent and inviting, would help draw her out. When I returned to fetch her she was one of the Ancients around the fringes snoozing in her wheelchair. I asked one of the caregivers what happened. How, first of all, did she go from her walker to her wheelchair? "She said her back was hurting her." Okay. I'm familiar with that one. I asked how it was that she ended up on the fringes sleeping? "She drifted off at the craft table." I can understand that one, too. This spring when MPS and her daughter visited and we purposely made cards one evening at the table and became ridiculous in our attempts to encourage Mom to participate, she didn't do anything; and this was with family members with whom she's always thrilled to visit. As I recall, she even tried to go to bed early because, I think, she found the activity uninteresting. I didn't let her go to bed until we all retired. It wasn't a knock down drag out, I just said, "No, you can stay up and wait until we all go to bed. I'll make you some coffee (very weak instant decaf)."
I was thinking about it tonight in my frustration over today, and yesterday and the day before. Sometimes the suggestions that everyone would like to promote because they sound so damned good just aren't the right suggestions. Sometimes you have to listen to your Ancient One instead of those who consider themselves experts on Ancient Ones but aren't Ancient themselves.
As far as non-movement, though, I can't listen to her anymore about that. If pestering her to move a little will keep the CHF episodes a bit beyond arm's length (and, it's just a guess whether they will or not), then I'll try it again, until I again find myself in the place where I'm badgering her and making us both miserable.
It's not possible for all of us to be either caregivers or Ancients like the models. The models, in fact, are unrealistic, devised by a society that knows almost nothing about caregiving. Sometimes the answers aren't in slick pages in magazines or on the internet, even though these places insist they have the answers. Sometimes you have to turn your back on all that well meant "in my experience" advice and figure out what's going to work for you. It's not easy in a society that doesn't encourage us all to be caregivers from the moment we begin to take notice of others in our environment, nor is it easy in a society that ignores this circumstance as though it's a minor hitch and insists that turning caregiving into a commercial enterprise and following all the happy face rules is going to work.
All this happy face, use-the-commercial-resources advice didn't work for Sandra Day O'Connor and her husband. What in the world makes those in the caregiving industry think it's going to work for the rest of us?
Time to take my cranky self to bed.
I know I seemed to take easily her declaration, yesterday, that she didn't want to get out anymore or move much anymore, but I told her tonight that I can't accept that if it's going to mean that I have to negotiate more CHF episodes. I don't know. I forgot to mention: During one of those week or so silences in my journaling, back there, not too long ago, I tried dropping her off at the elder day care center in the town east of us (there doesn't seem to be one here, anymore) for a couple of hours. I'd talked to them, visited the place before hand, took her prepared with both walker and wheel chair. It seemed like a fairly lively place although there were a few Ancient Ones sitting around the edges of the day room snoozing in their wheelchairs. There were, though, other activities going on, including a sing-along to records and some crafts at some of the community tables. Mom went in (bless her pride) walkering. She hadn't wanted to go but I remembered that editorial in Caregiver.com regarding how good Adult Day Care could be for an Ancient One and insisted on taking her while I did some shopping. She's never been particularly social but she loves to people watch and I figured, well, maybe the overseers there, who seemed bright, competent and inviting, would help draw her out. When I returned to fetch her she was one of the Ancients around the fringes snoozing in her wheelchair. I asked one of the caregivers what happened. How, first of all, did she go from her walker to her wheelchair? "She said her back was hurting her." Okay. I'm familiar with that one. I asked how it was that she ended up on the fringes sleeping? "She drifted off at the craft table." I can understand that one, too. This spring when MPS and her daughter visited and we purposely made cards one evening at the table and became ridiculous in our attempts to encourage Mom to participate, she didn't do anything; and this was with family members with whom she's always thrilled to visit. As I recall, she even tried to go to bed early because, I think, she found the activity uninteresting. I didn't let her go to bed until we all retired. It wasn't a knock down drag out, I just said, "No, you can stay up and wait until we all go to bed. I'll make you some coffee (very weak instant decaf)."
I was thinking about it tonight in my frustration over today, and yesterday and the day before. Sometimes the suggestions that everyone would like to promote because they sound so damned good just aren't the right suggestions. Sometimes you have to listen to your Ancient One instead of those who consider themselves experts on Ancient Ones but aren't Ancient themselves.
As far as non-movement, though, I can't listen to her anymore about that. If pestering her to move a little will keep the CHF episodes a bit beyond arm's length (and, it's just a guess whether they will or not), then I'll try it again, until I again find myself in the place where I'm badgering her and making us both miserable.
It's not possible for all of us to be either caregivers or Ancients like the models. The models, in fact, are unrealistic, devised by a society that knows almost nothing about caregiving. Sometimes the answers aren't in slick pages in magazines or on the internet, even though these places insist they have the answers. Sometimes you have to turn your back on all that well meant "in my experience" advice and figure out what's going to work for you. It's not easy in a society that doesn't encourage us all to be caregivers from the moment we begin to take notice of others in our environment, nor is it easy in a society that ignores this circumstance as though it's a minor hitch and insists that turning caregiving into a commercial enterprise and following all the happy face rules is going to work.
All this happy face, use-the-commercial-resources advice didn't work for Sandra Day O'Connor and her husband. What in the world makes those in the caregiving industry think it's going to work for the rest of us?
Time to take my cranky self to bed.
Tuesday, July 19, 2005
Newark. Not New York.
Earlier this evening, as I always do, as my mother always prompts me to do by asking, usually about half an hour before she retires (like a setting a timer), "So, what's on the agenda for tomorrow?", I mentioned that I need to make a trip to Costco. We're running out of paper underwear and we could use a few other things, bacon, Parmesan cheese, maybe some of those blueberries if they have them, maybe I'll make another blueberry cobbler ["Mmmm, yes, blueberry cobbler. Definitely get blueberries if they have them. Do we still have cream?" Yes, we always have cream.], more salad greens, we're going through them pretty fast these days...and, I said, "Maybe I'll wait until you're up tomorrow. We'll get you bathed, your hair looks good in that side cascade..."
"It does, doesn't it! Thanks to my hairdresser..."
"...yes, tip that hairdresser well..."
We both laugh...I'm the hairdresser...
"...we'll throw the walker and the wheelchair in the back and you can go with me, look around, people watch, you know..."
Her face scrunched. "I just don't like that wheelchair, or that walker."
"Mom," I said, "if you're going to go out, we need to use them. That's all there is to it. It's better. It's safer. And if you get a back ache from the walker the wheelchair will be handy. Good way to survey the world. Don't you want to get out and see what's going on out there?"
This is a routine speech I give about once a week, sometimes more often. We've both memorized it. And her response. It's all on the schedule.
Tonight, though, the schedule went haywire. Mom's response, "No, I don't think it's necessary." Just like that.
I did an internal double take. I couldn't let this go. I needed clarification. "You mean it's not necessary for you to go with me to Costco tomorrow or it's not necessary to get out?"
She looked at me as though she'd just discovered that she'd given birth to an inordinately stupid human. "Go to Costco, get out. Same thing."
So, we're here. Wow.
Earlier in the day I was talking to MPS. I'd previously neglected to mention to her that this is the summer when Mom isn't revving up from winter, anymore. "She's slowing down," I said, choking on some tears. "I didn't think it would be this summer, I thought she had one more in her. But I was wrong."
"I think that's okay," MPS said, both of us softly, audibly weeping. "She's happy [and she is]. She's comfortable [and she is]. She has everything she wants [and she does]. She's in her own home, she's safe, she has family there, she's not just tolerated, she's the focus of someone's loving interest, I think it's okay that she's slowing down."
Funny, this is the same conversation I had with MCS a few weeks ago. It's all true. I've been saying it. My sisters have been saying it. Not until tonight, though, did I acknowledge it, when Mom said, "No, I don't think [getting out] is necessary."
I left the room for a minute to get something, I don't remember what, and fought back tears of realization. Took a few deep breaths. Once again, it was as though someone had come up to me and said, "New York?!? No, you're in Newark, not New York."
I thanked Mom for telling me this. I needed to know this, I told her. I've suspected that we drove past New York a while ago: Each time I've pushed a little here to get her out, badgered a little there to try to get her moving through the door or, at least, do a few exercises to prepare her muscles for moving, every time she's resisted and I've decided to drop it because it's not worth her irritation or mine, I've wondered where we really are.
Now I know. The shock's worn off and I feel better.
No wonder. I can stop looking for the Empire State Building and concentrate on what's around me. Newark. Not New York.
"It does, doesn't it! Thanks to my hairdresser..."
"...yes, tip that hairdresser well..."
We both laugh...I'm the hairdresser...
"...we'll throw the walker and the wheelchair in the back and you can go with me, look around, people watch, you know..."
Her face scrunched. "I just don't like that wheelchair, or that walker."
"Mom," I said, "if you're going to go out, we need to use them. That's all there is to it. It's better. It's safer. And if you get a back ache from the walker the wheelchair will be handy. Good way to survey the world. Don't you want to get out and see what's going on out there?"
This is a routine speech I give about once a week, sometimes more often. We've both memorized it. And her response. It's all on the schedule.
Tonight, though, the schedule went haywire. Mom's response, "No, I don't think it's necessary." Just like that.
I did an internal double take. I couldn't let this go. I needed clarification. "You mean it's not necessary for you to go with me to Costco tomorrow or it's not necessary to get out?"
She looked at me as though she'd just discovered that she'd given birth to an inordinately stupid human. "Go to Costco, get out. Same thing."
So, we're here. Wow.
Earlier in the day I was talking to MPS. I'd previously neglected to mention to her that this is the summer when Mom isn't revving up from winter, anymore. "She's slowing down," I said, choking on some tears. "I didn't think it would be this summer, I thought she had one more in her. But I was wrong."
"I think that's okay," MPS said, both of us softly, audibly weeping. "She's happy [and she is]. She's comfortable [and she is]. She has everything she wants [and she does]. She's in her own home, she's safe, she has family there, she's not just tolerated, she's the focus of someone's loving interest, I think it's okay that she's slowing down."
Funny, this is the same conversation I had with MCS a few weeks ago. It's all true. I've been saying it. My sisters have been saying it. Not until tonight, though, did I acknowledge it, when Mom said, "No, I don't think [getting out] is necessary."
I left the room for a minute to get something, I don't remember what, and fought back tears of realization. Took a few deep breaths. Once again, it was as though someone had come up to me and said, "New York?!? No, you're in Newark, not New York."
I thanked Mom for telling me this. I needed to know this, I told her. I've suspected that we drove past New York a while ago: Each time I've pushed a little here to get her out, badgered a little there to try to get her moving through the door or, at least, do a few exercises to prepare her muscles for moving, every time she's resisted and I've decided to drop it because it's not worth her irritation or mine, I've wondered where we really are.
Now I know. The shock's worn off and I feel better.
No wonder. I can stop looking for the Empire State Building and concentrate on what's around me. Newark. Not New York.
