Sunday, May 8, 2011

Dan again, with the Mother's Day recap. I got to see Mom around 2:30 p.m. today, and she was at first very slow to talk. I think her speech is more garbled now than before, or perhaps more accurately, takes longer to "ungarble." Still, some things are very clear, some less so.

I sat with Mom out in one of the common areas for a good amount of time, her feeding apparatus close by. We talked a little, then called Viv, but unfortunately Mom was not that talkative. It took me a while until she was talking back and forth with me a little, at first a very little, but enough that I could ask whether she wanted to go outside for a bit, and feel secure I'd get an answer. With a "that would be lovely," I got the nurse to disconnect the feeding apparatus, and off we went to the downstairs patio.

She did seem to like the fresh air, though we still didn't have that much to say to each other. Mark called, and she still said very little. But when we were on our way back in, she began to offer some confused observations. These come and go, but they're helpful (I think.) They help her get her bearings in a way... today she said "You're not my son, you're my grandson." Well, I thanked her for her opinion of my apparently youthful disposition, but corrected her and told her "I'm your son, Danny." Etc. She looked at me intensely at this point. Then she said, "Yes, you're Dan, I know who you are," as if to say "don't be a dolt, of course you are." But she followed up with "do you have a father here?" I explained my father was her husband, who'd passed away some years ago.

On our way back in, one of the other resident's family members helped me with some of the doors, and she asked "Who was that?" I told her, family of one of the other residents. Then a stranger said "Happy Mother's Day." She looked a little threatened by that, and when we got back to the room, she asked who that was. I told her it was just a random family member, being social. She seemed to accept that.

Then for the last hour or so I think she was very with it. She looked very sad and I asked her if she was sad (a much more successful strategy, usually, than asking "what's wrong.") She said "yes." Then I went to "what's wrong," and got a reply I didn't understand. I asked if the nursing home made her sad, tried a couple of other things. She said "I'm only sad when you talk to me."

Well that was just a fine comeuppance. So I asked whether she thought I talked down to her (When she's not yet conversing I feel that I over-do the non-threatening gentle tone, and when she's "with it" I wonder if she thinks I'm talking to her like a child.) She shook her head. I told her I love her, and all her children love her, and she said "I know." She started talking about my father - "my husband" to her of course - and said she thought people had asked her about him. I recounted the conversation we'd had earlier. She said he passed away over 30 years ago. Pretty spot-on.

Her eyes got wet again, and I asked her if she missed him sometimes. No reply. I said "I know sometimes you fought but everybody does." She said something with the word "hurt" in it. (I'd checked with her a few times if anything physically hurt, so I thought she must mean the other kind.) I asked if she meant her and her husband had each other, and she nodded... I assured her we always hurt people we love, even if we don't really mean it, even if we mean it at the time but don't really mean it. She was still wet-eyed. I asked if she were sad. She said, "no, happy." I said that makes me very happy, and for the moment, that was that.

Somewhere along the way I noticed a beautiful flower arrangement Mark, Leah, and Debbie sent, so I called him back and told him they were beautiful. This gave Mom the chance to thank him as well.

She told me as I was going she had to talk to all of us. I asked if she meant getting us all together, and she said "it doesn't matter." I told her she'd keep having the chance to talk to all of us, and reminded her that Mark and Leah were coming down next Saturday.

I have only my subjective idea of this visit to describe, and perhaps wrongly, I think I know some things from it. One, that Mom's still emotionally active in there. Two, that she's got more or less connection to the facts of her life at different times, and that on a good day, some patience can be richly rewarded. And three, that there is no way of knowing whether one is writing one's own narrative wholecloth around a scanty framework of actual details.

I do feel fairly sure that she knows she's loved, and I think that this is a good thing.

Saturday, May 7, 2011

Dan here again.

We dropped by in the late morning today, around 11. Laura and I looked at the tube site, and again, we noticed more leakage than we would have liked to see. I think Laura mentioned in her last post that the stomach acid irritates and reddens her skin when there is leakage. There seemed to be a fair amount of leakage, and Laura is going to follow up next week both on that and on the care of the tube site.

Mom's eyes were open and teary, and for long while would not talk. When she did it was very hard to understand her, and I think she was sad today. He affect is so flat that it still feels like a guess. So, I talked to her for a while about Meryl's recent visit, Mark's coming visit, my recent lunch with a friend of ours from Fredericksburg, and so on. She remained hard to understand when she talked, which I told her. She said she didn't undestand (something) - the direct object got garbled. I was a little worried part of the trouble for her might be interpreting the incoming signals as well as finding the words for the outgoing. So I asked, do you understand me? She said yes, but then very clearly added, "I haven't anything to say to anyone."

Well, we spoke a bit longer anyway, and she got a bit clearer here and there, mainly in answers to questions and sentiments like "good" and "wonderful" when we told her various family members are doing well.

We'll see her again tomorrow, and I hope she's in a bit better spirits for Mother's Day.

Totally Unrelated Subject

Just wanted to brag a bit for something I can take no credit for!!





This is our newest great-niece, Molly Lynn Hanson born at 8:57 this morning in Lansing, Illinois.

Friday, May 6, 2011

The O'Keefe Finally Gets Hung at the Head of Estelle's Bed and Mini Roses From Meryl


Happy Friday!!

Not much to report today. Estelle was sleeping when I got there around 9:30AM. She'd had her shower and was finishing up with a feeding. I got the nurses to show me the site when they disconnected it and it looked pretty good. Some leakage but apparently they've talked to the doctor about it this morning, described it to him and he says that's acceptable and probably the best we're going to get. Leaving it open to air seems to be helping the healing process tremendously and it looks much less red and raw.

I did not stay long this morning - about an hour or so. It's laundry day here in the Alexandria and I've been suddenly bitten by the Spring Cleaning Bug. (I KNEW I should have gotten that darn vaccine last December!!!) If I wait more than 20 minutes to act on it, the urge will pass and it will be 2012 before I get back around to it. The cats would be happy (they hate upheaval of any sort) but poor Dan will be sadly disappointed so in the interest of marital harmony - spring clean, I will. The cats will just have to shred new papers and destroy a different section of the couch.

Shabbat Shalom and have a happy weekend!!

Thursday, May 5, 2011

Still having trouble with the feeding tube. While I was visiting Estelle this morning I checked the site to see if it was healing up any and found, to my dismay, that while the surrounding skin looked considerably better the tube itself was still leaking. There was not a feeding going on at the time but there was a goodly amount of drainage being caught in a washcloth. I questioned her nurses about it and they said that the cloth had been left there after her feeding was completed so they could show me how much it was leaking. There wasn't nearly as much as there had been but it's obviously still not leakproof by any means. We left the cloth off and I stayed another hour or so in order to check that it was not also plain old stomach acid leaking back out and the area did seem to stay dry, so that's good. It means it's only leaking the actual feeding and not a constant slow drainage but we'd really like to see it not happening at any time. That may be a pipe-dream, however, since it's hard to avoid any leakage at all. I won't settle for what there still is, however. As far as I am concerned it's still too much. It may take time for the skin to grow back around the tubing so we just have to wait and hope for now - and try to keep the area as clean and dry as possible while the skin grows back around the insertion site.

It's also ruined virtually all of Estelle's clothing, unfortunately. The combination of feeding material and stomach acid does not wash out - and it eventually eats holes in most cloth material. Because she's suffered through so many large leaks most of her tops are unwearable. We've been leaving her in a hospital gown often lately because it is easier to clean her while wearing one and because it makes no sense to put her through the hassle of being moved around enough to take her shirts on and off over her head more than once or twice a day as her clothing needs changing frequently because of the leaking. I'd brought her some of my extra big sleeping t-shirts last week and that's not working out well either so today I went to Marshall's and bought her a few pretty housecoat type gowns made out of terrycloth which zip or button from top to bottom so they don't have to keep pulling shirts over her head and two pretty "lounging" outfits with stretchy pants and large tops with buttons for "company." (I'm a big believer in "company clothing." As long as I'm not leaving the house and no one but my family is going to see me I'm really happiest in ratty clothing which is worn out and comfortable. But if I'm gonna see someone, then I break out the good jeans.) I remember Estelle seemed to follow the same pattern when we would go visit so I'm hoping this is in line with what she would have wanted for herself, too.

Regardless, until this clears up, for safety sake and to avoid further irritation and the possibility of infection, I think the hospital gowns are going to be the best bet. We've also suspended the "getting up in the chair" for a bit, too, until the inflamation and soreness which has spread across her belly is gone. When she's in a sitting position it just totally scrunches the tubing and the insertion site and causes that much more pressure on skin which is barely staying intact. The last thing we want it to do is open up - they've done a great job of avoiding that so far but it's a constant worry. So, for right now, the less pressure on the area, the better.

Other than that, Estelle looks good. Still a bit dry in the mouth and skin but better than a few days ago. She slept throughout most of my stay today but did wake up when I moved the chair back across the room when I was getting ready to leave. She said, "Oh, hello," and something I did not manage to catch and which she would not repeat so I put the chair back at her bedside and stayed another half hour but she did not speak for the rest of my visit. I tried to read her a Mother's Day card which Vivian and her family had sent but I do not know if she heard me or not. We will read it again to her tomorrow in case she did not. In the meantime there is a cork board in her room and we pin all of her cards to the board and she can look at them when she is awake.

I'll stop in again tomorrow morning to check on things. Hopefully, because it's bath day, Estelle will be awake and alert and happy that she's had her beloved shower and we can have a conversation and maybe open the blinds and the window {if it warms up outside) and she can hear the birds singing.

Tuesday, May 3, 2011

Estelle had some trouble with her feeding tube yesterday and spent the day trying to get an opening at the hospital for replacement. Unfortunately they could not fit her into the schedule so it had to wait until today.

I went to Woodbine this morning and waited for the ambulance to come and then accompanied her to the cardiovascular/GI lab around noon. Once there she was quite agitated. She does not like ambulance trips at all and this one was no exception. The hospital is less than 5 minutes away but it's still an ordeal to get moved from bed to stretcher, stretcher to bed, bed to stretcher, stretcher to bed and I think she knows it.

Once we got signed in (which was an obnoxious ordeal) she was treated promptly and very, very nicely. There was a Physician's Assistant and a fleuroscopy RN with us at all times. They examined her carefully and kindly and found that the small silicone disc which holds the tube flush against the skin was no longer in place, thus causing stomach acid and feeding material to leak back out from underneath of it. The circular disc sits around the tubing and it keeps riding up and away from the skin which allows stomach contents to bubble out of the stoma itself and spill onto the surrounding skin. They put two stitches into it - stitching the tubing to the disc which will prevent the disc from riding up. They also deflated the ballon which is inside of the stomach and re-inflated it with two additional cc's of sterile water in the hopes that it will hold the inner workings in place, as well.

They flushed it several times without any leakage, cleaned the area carefully, medicated the irritated skin and gave me written and verbal care instructions to take back to the nursing home.

Because the tube has been leaking virtually since Day 1 both nursing homes were keeping heavy gauze pads around the entire site in an attempt to collect the drainage and keep it from dripping - the dressing worked wonderful for that, but it also kept the skin underneath the dressing constantly moist and irritated. Now that it's not leaking at all we are hoping that applying an antibiotic salve and leaving it open to the air will heal it quickly.

Estelle does not verbally complain of pain in the area but we've noticed that she does constantly pick in the general vicinity and occasionally becomes agitated and pushs at the tube site quite vigerously. We are assuming it is painful for her and we are praying that this helps heal the area.

She was awake for most of the trip and the procedure. She was talking fairly often but, unfortunately, her speech was totally unintelligible at all times today.

I went back to Woodbine with her and stayed until she fell asleep. I'm sure she was exhausted from all of the moving and from the procedure itself so I hope she sleeps peacefully for the rest of the day and the night. She was quite dry from not having any fluids in over 24 hours and they were starting her feeding when I left. That should help perk her up, too.

Hope all is well with everyone else. We think of all of you often.

Weekend, April 30 - May 1, 2011

By and large, Mom's had a good weekend, and Laura and I breathed a sigh of relief.

We went to visit her early Saturday afternoon, and were surprised that Mom was awake with her eyes open, and with a bit of prompting was talking again. We took that to be a sign that she was getting her strength back after her most recent infection. The weather was warm and sunny, so we took her outside to the patio. There, she did not talk as much, but I think she enjoyed the change of scenery.

Later Saturday, Mom also had a special treat, because her friend Meryl came down to see her as well.

When Meryl came into town, we met her at the Hilton just down the street from us, had a nosh, and went straight to the nursing home. Mom and Meryl caught up a little, and again, Mom was alert and fairly "chatty," to indulge in a relative characterization. I think she enjoyed very much seeing an old friend. Sometimes Mom's silent. Sometimes she tries to speak, with mixed success; sometimes she needs more time than the average person to get the words out. And other times, like the rest of us, she hasn't anything much to say. She actually reported as much when Meryl was trying to get her to talk with her more toward the end of Saturday - "I haven't got anything to say."

We began to talk about getting back to the hotel, as Mom also seemed to be tiring out, and Mom interjected quite plainly, "It isn't time to say goodnight yet." This was music to my ears, personally, and I think much of it had to do with Mom getting a chance to see an old friend. So we decided to hang around, talk some more, not talk some more, and generally just be there for a while longer. Eventually Mom did get tired, and was okay with us leaving for the evening.

On Sunday, we returned with Meryl, and we went with Mom out to a sitting area. Meryl and Mom caught up some more, and when Mom wasn't talking much, Meryl, Laura, and I chatted amongst ourselves. The subject touched on new gizmos and gadgets, like smart phones, and the constant task of keeping up with "what's new."

I talked a little about the pioneering brown tank of a microwave oven that my father had brought home when we were kids. It was a behemoth of an appliance, and when you cooked with it, the radio immediately switched from talk or music to loud static. It had one setting, which would have been "cook" had they thought to name it (as I recall). There was an egg-timer dial you used to deliver timed microwave exposure that the food was to be subjected to. It did not turn food around automatically. The recommended procedure was to half-cook the food, stop the microwave, and turn the food around by hand, before administering the last dose of radiation. In any event, Mom remembered this little feature of our house in Fredericksburg as well, and seemed amused by the memory.

Laura will be back in the morning, and we do hope Mom continues to talk and keep her eyes open during our visits. I think she was beginning to get her strength back, but Meryl's visit was a wonderful "booster shot."