Sat. 7/30-Sun. 7/31

Well, yesterday (Saturday) Mom was fairly chatty, at least at first. She kept mentioning family in England, and we were able to call through. But between how soft her voice is, and I suppose a little difficulty once we called, she didn't manage much over the phone. Her confusion seemed a little cleared up, and she's finished her last course of antibiotics for the last UTI. She also wanted very much to get a glass of water, which of course, she still can't have. Usually, when she is more out of it, it does not bother her. I can only imagine what that must be like, and I usually try not to imagine it (ever her fluids all have to come through the G-tube.) She still has the upper respiratory infection/cough, which does not sound so terrible, but produces a lot of secretions, and we all worry about aspiration (the nurses use a suction pump to try to clear that out, but Mom tends to bite down on the hose - so they have mixed success.) Today, I stopped in and she was adamantly asleep the whole time. Despite a few attempts involving loud "hellos" and a jostle or two, she barely opened her eyes to acknowledge me. So, after a pretty short stay I departed again. Sometimes, I suppose, she'd rather rest.

Sat. 7/23 - Sun. 7/24

A very brief note today. Saturday I spent a good deal of time with Mom again, and she is back to talking more. I think Laura's recent thought about the UTI connection to her silent periods is spot on. Of course her conversation is never fluid, but Mom was able to talk with me. We called over the pond to Marlene, and also talked to Merryl, and then Mom had had enough of the phone calls for the day. I played guitar for her for a long time, punctuated occasionally by rearrangements of chairs so her roommate could squeeze by. I left a little after five, and told her I'd bring a newspaper and read from it to her, and we could call Viv and Jenny, and she replied "the usual." Well, unfortunately the usual didn't work out so well. She was in the common dining hall when I came in, asleep in front of the television. I tried a bit to wake her, then waited for a little while just watching some inane movie about King Solomon's mines. She never did wake up today while I was there... but seemed to be having quite the satisfying nap.

Well, that's all for this week. I hope all are well, happy, and rested.

Dan

Thursday, July 21. 2011

Finally - we have semi-computer access. Not great, not even good, but better!! Blogging from an IPhone isn't all it's cracked up to be.

Anyhow - a brief update.

Estelle is hanging in there. She's done with her 5 day course of antibiotic for the Upper Respiratory Infection and starting another course for a UTI which was diagnosed yesterday. I think we had mentioned that we had noticed a connection between an decrease in her lethargy whenver she was on an antibiotic and were concerned that she may be suffering from undiagnosed Urinary Tract Infections which got better incidental to antibiotics which were administered for other infections. I mentioned it to her doctor on Monday and he agreed it was a possibility and ordered a urine culture which came back positive for infection yesterday.

I am patting myself on the back here today because I am two for two this week. My own mother has similar problems only she tends to get very weepy and confused when she has a UTI. She called me crying twice this weekend and so I asked her nurse on Monday to check her urine, also, and she, too, was positive.

It is common in older people for the only sign of a UTI to be mental status changes and it's hard to pick up on - especially when, as in Estelle's case, the patient is fairly non-verbal to begin with.

I'm going to try to get the doctor to agree to check her regularily from now on. It's not optimal because it involves getting a urine sample with a catheter each time but an undiagnosed UTI can quickly turn into a full blown kidney infection so, weighing one outcome against the other, I think the regularily scheduled cath is the lesser of the two evils. Plus, she is more alert when she is infection free and I'm sure she probably feels better, too.

Her breathing has eased somewhat and she is coughing frequently now. The nurses are trying to suction her as often as needed but it's an uphill battle because she really fights the suction and proper suctioning requires a good deal of cooperation to succeed 100%. They are doing the best they can under the circumstances and she seems to be able to clear some of it herself so we are hoping it continues to clear up with a combination of the two.

It is desperately hot here in Virginia - as it seems to be everywhere. Everyone please take care in this heat wave - I could never figure out why women in the South were always pictured with umbrellas when it wasn't even raining but now I understand.

My son is coming for a visit from Oregon next week - the temperature there seldom reaches 80 degrees - I am afraid he is not going to like it here very much. He claims to love the heat but I don't think he quite "gets it" and I'm positive he doesn't understand the word "humidity." His wife grew up in Florida so maybe she can prepare him before they arrive.

I certainly hope so.

Monday, July 18, 2011

Still no computer access so this is all one-finger typing on an I-Phone. Please excuse the brevity and typing errors. Estelle is marginally better today and the doctor discontinued her IV fluids. There is no active pneumonia on the chest x-Ray but it did show a slight worsening of her cardiomyopathy (enlarged heart) and a bit more area of plural effusion in her lungs. Both of these are indicitve of congestive heart failure which she was found to have back in (I think somewhere around) October when she was rushed to the hospital from the Manor.

I spoke at length to her doctor today and there's really nothing they can do that is not already being done. He's fine tuning her heart medications and keeping her on oxygen and breathing treatments for now but CHF is not a curable condition although it can be treated and the patient can be kept comfortable - which they are doing. It is, however, most likely going to be progressive. This is also what we were td by the cardiologist at CentraState Hospital last year.

Meanwhile, she seems more comfortable today and the raspy breathing is much better. The doctor also ordered a urine culture and we are going to start doing them whenever Dan or I notice she is getting more non-responsive when we visit. He agreed with us that there is a possible connection and it is worth looking into.

I wish there were better news to give everyone but this is not unexpected or insurmountable. It's just one more "thing" to be aware of and to try to keep on top of for family and staff.

Sunday. July 17, 2011

So sorry. We have no Internet access and will not have it again for several more days. Estelle has been having some raspy breathing and the doctor has ordered breathing treatments, antibiotics and a chest x-ray which is being done today. She has no fever and her vitals are stable at this time.

Thursday, July 7, 2011

When I first arrived around 9AM, Estelle seemed to be sleeping very soundly so I first straightened her room a bit and hung all of her new cards on her board and then, when I was attempting to check on her feeding tube site (which she seldom wakes up for when I do) she opened her eyes and loudly said either, "Don't bother me," or "Don't bother with me," thereby scaring the life out of me.

I explained who I was (because she often does not recognize me) and what I was doing and she said, "I know all that." I asked her if I could check it and she said sure and so I continued and it looked unchanged. It's still leaking a bit but not badly and her skin remains with the same amount of reddened area as usual. It does not seem to get any better but it certainly is no worse and I suppose that is a good thing.

I sat down and tried to talk to her but she wasn't very responsive. When I asked her how she was she said, "Oh, not so good," but I could not get her to elaborate at all. I went down the list of things which could be hurting and she either said "no," or did not respond to any of them.

I told her about our new car and the broken window and she was silent for about 10 minutes and then, clearly, said, "What did you say?" I repeated it and she said, "Oh, that's terrible," and she asked me what kind of car we had gotten "this time," which was kind of funny because we have had the same car for almost as long as I have known her.

After that it was all downhill. I asked her if there was anyone she wanted to call and she did not respond. I spoke about the weather, I mentioned names of friends and family, I told her about my son's impending visit but she did not respond to any of it.

I stayed for awhile longer without any successful conversation. She appeared to be sleeping when I left. I told her good bye and that we would be back in a day or two but I am unsure if she was aware I was leaving or if she heard what I had said.

Her speech, what little she did say, was very clear, however, and that was a happy thing for me. I often have trouble understanding her but there was very little difficulty today.

Hopefully the weekend will cool down enough that Dan can take her outside for a bit.

Sunday, 7/3/11

Well, I did not make it back today (Monday.) Yesterday Mom was alert again, and we made a few phone calls. Mom was especially sweet with Vivien, saying she wished she could lend a hand with Viv's housework and kids. She seemed very with it. She also said she should learn to use the phone again herself. I showed her the phone on her bed table, and put it on her lap, and I started out trying to get her to recognize where the numbers were on it. I could not get her to touch the numbers, and she showed no sign of connecting the object -- the phone set -- with what she wanted to do (i.e., learning to use it herself.) When Mom is most with it, I get enthusiastic about ideas like "if only she [i]could,[/i]" but then I hit reality. I realize she wants to [i]be talking on the phone herself,[/i] but that she cannot connect the phone set as it appears in reality with that desire. Of course, the desire itself has to last long enough for any effort to be rewarded. She has a seemingly insurmountable wall between such a desire, and doing the physical things it takes to bring about the thing she wants (in this case, move her hand to the number pad.) In any event, she also opined yesterday that she should have everybody's address... Jenni thought that might be because she has always been so good about sending people cards on birthdays, holidays and the like.

Laura's going to pursue getting a monthly urine culture. She's noticed that antibiotics for infections sometimes result in a much more lucid state, and she's wondering if some of Mom's confusion is linked to UTIs that are coming and going undiagnosed; we'll see. So far she's made no progress on doing even very simple things, and this time a week or two ago I was wondering if she'd spoken with me for the last time (she had one of those days when she did not speak the whole time while I was visiting.) It was like that on my first visit with her Saturday as well, although if you read that entry, you know that she ended the visit with two words (after silence for an hour.)

But it's possible that there are frequent UTIs we don't know about. If so, they can be addressed with yet other antibiotics, and with a catheter to minimize the effects of her current arrangement. We'll see... consistent ability to focus may just be beyond her, or it could be completely within her power, but made that much more difficult because of repeated infections. If she can focus, considering what's important one day to be important the next day, one can take the next step and attempt to teach her to use the call button (that idea went nowhere when I originally seized on it,) and perhaps, eventually, the phone. Even if she could hold it to her own ear for incoming calls, that would be terrific. But one step at a time... if indeed any of it comes to pass.

Dan

Saturday, 7/2/11

Hello again, friends and relatives. Mom was in the dining hall today when I came in this afternoon. There's a big television there, and it's not unusual for her to spend some time there a few times a week. She does not socialize, but she hears the talk around her, and of course the television is always on. I'm not exactly certain that she gets anything out of it, truth be told, but I doubt she'd prefer to be secluded in her room.

I stayed around an hour this afternoon, and tried to talk to her. She looked at me but did not speak to me at all, until I was almost out the door. I said I was going, but that I'd come back later in the day. She surprised me by answering "I'm sorry." I'm thinking it's possible that she's lost a bit of the selective filter most of us have, which allows us to zoom in on a familiar voice that's close by. Or perhaps there was just so much going on there that she was overwhelmed and withdrew. It was truly as if she could not communicate at all. But I also know that she's spent many visits in her room at about the same level of communicativeness. So who knows.

I returned this evening a little before seven, and it was a different story. We traded greetings (a pretty good sign right there,) and I told her a story about our rear passenger side window getting blasted out by a stray rock hurled from a landscaper's weedwacker last week. I told her we'd brought the car in to get the window done, and they'd taken care of it right away. She let me off a hook she may have believed I thought I was on, opining, "Well, you can't do everything."

I asked her if she'd like to call someone, and she answered - I loved this - "I want to call everyone." So, I did try everyone, and reached one friend (Jenni). They had a nice few words together. I asked if she enjoyed the call, and she said "it's a warm gift."

Sometimes I think although she's got far less facility with speaking, some of the things she says are much more poetic. Maybe it's the act of reaching for words that mean the right thing, where most of us simply talk.

In any event, we talked a little more, then I played guitar for her until a little after eight. More tomorrow,

Dan