Sunday Morning, 12/7

Did I say this already? Life is better when my sister is here! I took Annie and Eric to the airport last night after their nice long stay. Annie's not planning on coming back until her winter break starts sometime after the 19th. My Mom always had a saying "take a movie in your head"... or "I just had a movie in my head". Mostly she'd be talking to my kids about how they were doing something dangerous... and she'd say "ya know, I just had a movie in my head that you were climbing upon top of that table and then the table fell over and you got really hurt!"... stuff like that. But it was such a funny notion to everybody... having a movie in your head... that it started meaning other things. Anyway, I've tried to be conscious about taking movies in my head of what goes on here, little snapshots of things that happen that I want to try to hold on to later and remember. It seems that a lot of them happen when Annie and I are both taking care of Mom. We'll be working together to get Mom dressed and ready for a walk and we'll each have a sock in our hands and will be standing next to each other each putting a sock on Mom's foot, I'll quick try to take a picture of that sweet moment. I think once you consciously take a picture of a memory, you're more likely to be able to hold on to it. I thought about taking a picture of Adam blowing up the rubber glove with his nose, but it turns out I didn't even have to... I think it's permanently etched itself whether I like it or not.
Anyway, Mom had a tough day yesterday and last night, it seems funny now that my last entry was that things were seeming quiet. Wish I had taken THAT picture in my head! Saturday night was totally sleepless, yesterday day was totally sleepless and when I got back from the airport last night, Mom actually conveyed to me that she felt like she was "suffering". She was just way too tense, crying out in distress and sheer agony, unable to regroup or relax. The relaxation is becoming more and more elusive unless she's medicated. At least she's open and welcoming to the medication... but as we go, the medication itself needs to be adjusted to be stronger or different to keep achieving the same level of comfort. We're going to consult the doctor tomorrow and see if he can recommend something a little stronger than Ativan, but not as strong as morphine... the only reason we have morphine here is that the hospice provides it in a symptom relief kit each time a patient goes on hospice. Aunt Martha was talking yesterday about when Mom's mother died and how effective it was to use Demerol... it reminded us that there are lots of medications in the middle that might not be so sedating. We'll look into that.
Adam and his family are coming for the day today, maybe Adam will get a chance to beef up our mural a little. He'll probably give a hand with the lift to the shower.
Going out with the girls this morning and Phil's mother to breakfast and to get our Christmas tree. That'll be nice for Mom to look at once it's up... it's going to sit right in front of her chair in the living room.

Quiet Days

It's been a quiet couple of day, Annie and Eric are still visiting and are leaving tomorrow. Adam is coming up tonight and again for the day on Sunday. I guess it feels mostly like Mom is quieting, not sure how else to say it. Mercy said last night was very quiet, Mom hardly woke up at all except when she needed some repositioning to help with her breathing. Then she got up this morning, got all washed up and dressed and has been sleeping in her bed ever since. Annie and I were just commenting yesterday also that Mom hasn't cried in quite a while... there was a time when she was getting very emotional (emotional outbursts are kind of part of this illness) pretty often, but now she doesn't seem to have the energy. Both her physical and emotional energy seem to be low. She cried a little bit on the morning that Adam got engaged... I put him on speakerphone and he told Mom how it all happened and about the engagement ring (which is the same one that Mom's father gave her mother when they got engaged in 1939!). Mom was very happy and cried a little in joy, but there hasn't been much since then.
Last night, Annie and Eric and I decided to start a colorful little mural on Mom's ceiling... it has a few flowers and butterflies, etc in bright colors... kind of right above her head. There's a towel hanging in the window right next to her bed... just to provide a little more privacy... and it happens to be a colorful, tropical print that always catches her eyes. She actually spends a lot of time with her eyes on that towel, which is probably what gave us the idea for the mural. It's a little um... amateur... so we're excited that Adam, the Artist is coming tonight. Hopefully he can help to bring it all together. Maybe we can take a picture when it's finished so you can see.
Which reminds me, a lot of you have been telling me that you'd like to post comments but you can't figure out how to get onto the blog. If anyone would like to email comments (especially fun memories) directly to me, I can post them in this main blog spot where people can easily see them. Sorry it's giving trouble. My email is sibona@optonline.net. If you have memories, I know a lot of you grew up with Mom and went to college and raised kids... (those of you who have the memories and the stories know who you are!!) Just type up your silly stories and send them and I'll just cut and paste them. All of you who know Laura know that she's a "stitch" and has always been so much fun to be around... let's share those good memories. And also please feel free to send your pictures. I'm running out! And haven't you seen enough of Mom in her bathing suit?

The Rest of The Day

So, at least for the time being, Mom seems to be holding her own. The hospice nurse was BESIDE HERSELF when she saw how different Mom looks today from yesterday. She had no explanation, although she did say that in most cases when people are suffering from CO2 retention, they're not able to correct it... I told her that Mom did have a period overnight when it almost looked like she was slipping back into that kind of "comatose" state... but then she just kind of got herself out of it by becoming more restless and vocal and agitated... nurse didn't have any idea. Mom has been expressing a little bit today that she is indeed having some trouble breathing, the nurse sat with Mom for a little while and talked about the use of morphine for difficulty breathing... I had asked her to talk about it a little bit to try and help Mom not be so scared of the idea. I don't know if that's possible or not, it IS a very scary drug, one that most people associate with "the end", but in Mom's case, it's also likely that it would be very helpful when she starts feeling like she can't get enough air. Mom wasn't happy about the talk but she sat and listened and became a little more informed. I like that the nurse kept reinforcing that it's really Mom's decision... that it's all up to her... that it'll all be by her wishes. Mom needs to hear that. She is still so strong and wants to have as much control as she can over her body and her care.
Anyway, the day was pretty smooth. Annie and Eric decided to stay even though Mom has made this turnaround. We had a good walk, and Mom spent most of the day up in the chair. Had a nice visit from Irm this evening... she showed up with casseroles in hand, including keilbasa and sauerkraut... which has been a family favorite since Mom used to make it when we were kids. That was probably the last time Annie or I even had it! It was 2 years ago this month that Irm lost her mother. I am in awe of her giving and her endless thoughtfulness. Mercy will take over the night shift tonight so Annie and I can get some sleep.

Wednesday morning

Adam spent some time yesterday evening, and Annie and Eric (her fiance) arrived around 10pm last night. Annie and I slept in with Mom and I don't think any of us slept all night. At one point, it seemed that she was going to start having the same kind of hard time that she had the night before, Annie and I were trying to ask her if she felt like she was having a hard time breathing because she certainly LOOKED like she was struggling a great deal. She kept herself awake all night... as I think happens with this illness, insomnia is common... people with ALS are scared to let themselves relax too much because they're scared they'll stop breathing. She has to stay alert and keep making herself breathe... it's actually really horrible to watch and it's hard to not feel that she's suffering. Anyway, the night went like that, we were all awake all night, but then today she's seeming more like her normal self of 2 days ago... with maybe slightly more labored breathing, but alert and answering questions and everything. Very strange. The same nurse that came yesterday is coming back this morning so Annie and I are anxious to hear her take on this turnaround. It's hard to imagine that someone could look like Mom looked yesterday and then completely turn a corner. Maybe this is her "rally" day... not sure. But Annie and I were able to share with each other how conflicted we both felt yesterday... certainly terrified to think that Mom's life could be coming to an end, but at the same time... a bit relieved to think that she doesn't have to go on like this anymore. It's kind of crazy to feel both of those things, without feeling guilty or cold or heartless. It's just that we know this doesn't have a happy outcome and we know that this is no longer the Laura, Mom, Babe or Nonny that we have all known. Annie's trying to decide whether to stay till the weekend as planned or go home and come back. Adam is planning on coming back tonight. Will try to update after the nurse visits.

5:45pm, 12/2

Crazy day, not sure where this ride is headed! Mom was pretty much out of it all day today, unable to recognize the presence of anybody, unable to respond to voices, able to respond to pain (like trying to stretch out her arms). She slept soundly, no medication... definitely struggling for breath most of the day. Annie's on a flight arriving in a few hours and Adam's on his way up from the beach. Then around 3pm when she finally woke up, she seemed to "come to" a bit, at least a little able to recognize when Mercy or I were sitting with her, able to respond to our voices, able again to answer some "yes" and "no" questions. My Dad looked up that online that the CO2 retention makes sense that maybe Mom can't quite clear the CO2 while she's sleeping but then once she's awake she's able to breathe better. Her comfort has not been as easy since she's been awake... but she slept very comfortably during the day. Adam just got here, Phil and Molly just got home... lots of dogs barking... will write more later.

9:45am Tuesday Morning

Mary, the nurse, was here.. she's been a nurse for 30+ years and knows MUCH better than me what's going on with Mom. She checked her all out and believes that she's probably retaining too much carbon dioxide that it's making her very sleepy and not responsive. Her breathing is very shallow... and it kind of all makes sense now because what we've been seeing the last few days is that she's making a groaning sound every time she exhales. That's most likely due to the weakness in her diaphragm, it must help her to push the air out of her lungs. Mary assured me that CO2 retention is very comfortable (which IS what it looks like) and that as her carbon dioxide climbs, eventually her oxygen will decrease. Mercifully, we shouldn't see any signs of "air hunger" which is what all the ALS literature warns us of! She hasn't had any medication now for almost 7 hours and is resting very comfortably with the sun shining in the window and landing right on her warm face. I'll keep you posted.

Morning of 12/2

Just wanted to give an update, and will try to do more during the day today. Mom hasn't really been responsive since about 3:30am this morning. Mercy called me down when she was concerned that Mom seemed to be only staring at the ceiling. Since that time, she doesn't seem to be able to respond to our voices and her eyes are very fixed and not reacting to light or any movement in front of her. She is responding to pain and has let us know that she doesn't want her arms stretched. Hospice nurse is arriving now, will write more later.