ARRANGEMENTS

Hello Everyone,

Sorry this took so long to nail down. Arrangements for Laura's memorial service are as follows:



Date: Saturday, January 3rd

Time: Ceremony 1:00-2:00pm

Memorial Reception: 2:00-4:00pm



Location: Morristown Unitarian Fellowship
21 Normandy Heights Road
Morristown, NJ 07960


Directions: http://www.muuf.org/directions.html

UPDATE!! In lieu of flowers, please consider making a donation in honor of Laura Lovell to one of the following charitable organization:

Robert Packard Center for ALS Research at Johns Hopkins
https://jhweb.dev.jhu.edu/eforms/form.do?formId=6897

OR

National Wildlife Federation (this was my mother's favorite wildlife organization, animal lover that she was!)
https://online.nwf.org/site/Donation2?df_id=6560&6560.donation=form1

Thank you all so much. We're planning a very special ceremony. Please remember that there will be an opportunity during which we welcome you to share memories and stories about Laura. Hope to see you there.

Mom and Music

Hey Everyone, Adam writing here.

Thanks for everyone's love and support through all of this. If there's one thing that Mom loved (and there were, of course, many many more than one!) it was for everyone to be around and come by and visit and talk and laugh and all that. It was her lifelong dream to just have all of her friends and family be around her everyday - laughing, talking, sharing, etc.


I just wanted to share with everyone...I was in the process of writing a "rock opera" of sorts. It was a futuristic sci-fi action story, and I had written and recorded about 6 songs. Mom was a very big inspiration for the story and even helped collaborate with me on the tale's direction.

I have posted a bunch of the stuff on a myspace.com page, and I invite you to check it out and take a listen. Sadly, there's nothing super-recent up here, but Mom was so excited to be involved in the process.

I am dedicating all of this material to Mom, and I plan to revamp one of these songs to play acoustically at her service this coming weekend, "Parade of Angels."

I hope you like it, my Mom loved it.
http://www.myspace.com/withoutmypills

Update: Sunday

Hi Everybody,
We're working on planning a memorial service for my Mom for next Saturday, 1/2/09 in Morristown, NJ. While we don't have the details ironed out yet, we know for sure that there will be important time included for family, friends and loved ones to share special, important and funny stories about Laura. This will be a very special service and it would mean very much to us all to hear your heartfelt memories. Details about time and location will follow.

Please, so many of you have asked what the family needs right now... I'd like to request that if you are inclined to contribute anything to the family at this time, in honor of my mother, please in lieu of flowers, feel free to make a donation to the Robert Packard Center for ALS Research at Johns Hopkins. Mary and my Dad did a lot of investigating about ALS research being conducted and felt this is the best place to receive our donations. They made a donation in my Mom's name and gave it as our Christmas gift. Here is a website where you can make a donation in specific honor of someone, just be sure to select - from the drop-down menu (when it asks you where you'd like to direct your contribution) the "Robert Packard Center for ALS Research". You can enter Mom's name and we'll receive a tribute card notifying us of your gift. This kind of gift will go much further in helping others who are certainly suffering from this terrible disease. Mom would love that kind of help.

https://jhweb.dev.jhu.edu/eforms/form.do?formId=6897

Thank you. Talk to you all soon.

Good-Bye

Laura Nason Lovell passed away at 3:35pm. We'll write again soon with info about arrangements, probably next Saturday.

The Cocoon

My Mom always called it a little "cocoon"... the gathering of family and loved ones that forms around a baby who has just been born. When my daughter Molly was born, Mom came and stayed with us for a couple weeks before and after the delivery to help take care of Chloe, etc. She said she was so glad to have been included in our little cocoon. I said "are you kidding? I don't know how we would have done it without you!" When Molly was just a few days old and was awake at all hours to eat, Mom used to say "why don't you feed her and then just pass her off to me to burp her and hold her until she goes back to sleep... that way you can go back to sleep and be a good Mommy to her tomorrow." That's how Mom is... she just gives and gives of herself... however she could to help you and to love you. Anyway, this is certainly a much less happy time, but the cocoon is the same. We're all just sitting bedside and helping and supporting each other and her and doing everything we can. Your thoughts and prayers mean so much... you may not be here, but you're ALL part of the cocoon as well.... we've shared all of your messages and all of your cards and Mom knows that your'e here with her. And just like a real cocoon, she will soon break out and spread her wings and fly like a beatiful butterfly.

The time is very strange right now, the hours feel like minutes and we're just waiting for her last breath. It's quite apparent to us all that Mom has all but left her body. I guess it started feeling like that yesterday when we were so sure she was about to take her last breath. It seems this is how it's going to be until the end. I'm not going to write anymore until Mom has passed away. God Bless.

Longest Day Ever...

Mom is still resting comfortably. Her oxygen level has been down in the 40%'s most of the day, she was taking 4-6 breaths per minute and her color was quite blue. Her breathing was very erratic and short and it seemed that the end was very near. Now that we just finished visiting with the hospice nurse, it seems that Mom has "rallied" a little and has pinked up and is breathing more comfortably more like 16 breaths in a minute. She's still quite sedated with the morphine, but she is comfortable. We've all been sitting by her bedside all day, crying over her and encouraging her.... now it seems a little that we can breathe, at least for the moment, maybe get some rest ourselves and see how the night goes. Will keep writing as I can. Thank you all for the prayers and encouragement.

The Final Hours

Mom is struggling in her final hours and we're doing the best we can, with the help of the hospice nurses, to keep her comfortable. I hate this disease. Annie's on her flight, Adam's catching some zzz's on the couch and Mary and I are taking turns resting on the floor of Mom's room. Her oxygen level is about 82%.

10:45pm, Christmas Night

It seems to us right now that Mom will probably not make it through this night. Her breathing is just so labored. The only comfort we can take is that the morphine seems to be helping her not feel the struggle to breathe. Adam is on his way up now and Annie's going to get on the first flight in the morning instead of the evening flight tomorrow. We are soothing her and singing to her and whispering all of our encouragement and our "I Love You's"... she is surrounded by her family... please pray for a smooth transition.

Resting Comfortably

Mom has been receiving morphine around the clock for the past 2 days and is finally resting comfortably. It's really amazing what a number it does on your head... now that she's in this "state", I keep asking myself "well, was it really all that bad? Was this really the right next step?" I've asked Mary and she's said "yes"... I've asked Annie and she's said "yes". But I guess no matter what, you can't help but feel like maybe you're overlooking some glimmer of hope that may have been there. It's so hard to remember, especially now looking at her so peacefully, that she was in such agony. The bottom line is that she is not struggling anymore... she's not struggling with that horrible feeling that it's such hard work to get a breath! She's not struggling with that paralyzing fear that was totally overtaking her...that look is NOT in her eyes anymore. She doesn't look scared... and even in this state, when I ask her if she's in any pain, she can tell me "no". When I ask her if she's OK, she isn't immediately shaking her head anymore. She's comfortable. I don't know how long she'll hang on like this but I promise to keep posting notes. Today, Mom's oxygen level is still at 96% and I'm working closely with the hospice agency and nurses who are paying close attention to Mom and her symptoms and her medication.
So, Merry Christmas, everyone. Thank you all for being out there! Thank you for all the beautiful cards and notes and gifts. They are all so heartfelt and appreciated. Thank you. Thank you for being a part of this "circle". Mary and my Dad arrived late on Tuesday night and are off spending the day with Adam and all of Sidra's family today. They'll be back late tonight. Adam, Sidra and Chris will be coming up tomorrow mid-day and staying over until Saturday. Annie is flying back tomorrow evening after spending these few days at home with her fiance. Christmas with the kids was OK... Santa brought them Rock Band for their playstation which they wanted to play in the living room so Nonny (Mom) could be a part of it... all I can say is it was very LOUD and Mom didn't notice! Still seeking sprawling farm somewhere for the two chows, please feel free to put out your feelers!

Relief...

Lots of relief to write about... first is the DOGS! What a huge relief to have this break from them! The intensity level in the house is so much lower than when they're here. They're really not bad dogs, but they are very intense... whimpering and barking and just never settling down. Annie and I dropped them off at the kennel yesterday afternoon and I immediately came home and took down the gates, gathered up their bedding and put it away, let my animals have free roam of their house again and suddenly everything was MUCH simpler!
Annie and Adam and I had a big "sit-down" on Sunday night and all agonized about these terrible decisions we find ourselves faced with... morphine vs. no morphine... to medicate or not to medicate... is she suffering or not? Is she in "pain" or not? Is there quality here? Do we honor her wishes and not medicate? We talked it round and round and round and all wished that something would just HAPPEN that would take these awful decisions out of our hands. Annie kept saying "I don't feel equipped or qualified to be making these decisions... why doesn't the doctor come and tell us what to do?" The whole time I kept thinking to myself "Well, I've done this for a living... I should know what to do... " even though it feels like we just keep going round and round and never really achieve comfort for Mom. So we sat at my kitchen table and decided that until all three of us are equally ready and convinced that morphine is the right next step, we won't really start using it in any heavy doses. Anyway, so here's the relief. I had a visit today from the hospice social worker, Mary Lou, who I know from working with her. We talked a while and she advised me that the hospice team which gathers every 2 weeks to talk about Mom's case... the team includes the medical director, a pharmacist, social worker, nurses, hospice director and chaplin... met this morning and talked about Mom and what's been going on. She said that the team feels that, at this point, Mom should be on a morphine schedule around the clock. That she is NOT comfortable and that she IS suffering. I told her we had just all talked about this and were close to being OK with this decision, etc... so I said "just let us know what to do... how much do we give?" She said "well, just work with the nurse when she comes and you guys can figure it out". When she said that... it was like a relevation... I said "you know, when the nurse comes... she basically just says to me 'Jess, you know what you're doing, just let me know what medication and supplies you need and I'll order it for you'. All of a sudden, it occured to Mary Lou and to me that I CAN NOT ADMINISTER HOSPICE CARE TO MY MOTHER! I think I've been feeling like that was my job here... I DO know what I'm doing, I know these medications, etc., but I need to just be the daughter here! I'm way too attached and I want way too much to honor my mother, that I am truly incapable of making these kinds of decisions for her. But what a huge relief... Mary Lou said "we've all been making the mistake of thinking that you could be the hospice nurse here... but you can't. Let the hospice team take these decisions out of your hands." When I was the hospice nurse, I would visit a family, have no attachment to the patient and would be able to objectively identify suffering and the need for comfort measures. I could easily help a family create a schedule for giving morphine and could assure them that this was the right time to take this measure. Can't do it here... and I don't want to. So the team feels it's time... the team members are all in complete agreement that Mom should no longer be aware of the suffering that she is enduring. They've assured us that morphine doesn't kill people, that people can go on for weeks or months on morphine... but it makes them unaware of their suffering and it will enable Mom to feel good for the first time in a long time. It's really time. Adam said the other night "well, but every once in a while she still laughs at our silly jokes". And that is so hard... we can still get her to smile, if we try hard enough (like when he had to resort to putting the rubber glove over his bald head!), but that's about 10 minutes a day... the other 23 hrs and 50 minutes, when she's awake, she's suffering. She cries out all night long in her bed and can achieve very very limited periods of comfort in her chair during the day. Mary Lou said "If you were in your mother's shoes and she was watching you like this, would she let it go on a day longer than it had to?" No. My mother loves me too much. I love her... we ALL love her too much to see her suffer the tragedy of this illness. She doesn't deserve it. She is truly the warmest, most loving and giving, the bravest and most courageous, the most fun, the most kind-hearted and caring person any of us could ever know. It's not right that she should feel as badly as she does right now.
So she hates going to bed... something about moving from the chair to the bed totally sets her off at night (we'll have to reexamine that tomorrow and see maybe about arranging where she can stay in the chair at night) and it took a large dose of medication tonight to get her comfortable where she can truly sleep... but she's sleeping and it'll be the first night in very many nights that she isn't in total angst all night long. Wishing all of you a blessed holiday.

Ruff Going.....

We decided to board the chows for 10 days over the holidays starting on Monday... just have to get a couple of Blackie's shots updated first. This'll be a nice break for everybody... Phil's planning on being home from work from 12/24 till 1/2 or 1/5. We'll be able to open the gates and all move around much easier.
Mom is continuing to have a hard time breathing... her breath is very labored and she needs to be pushed forward in her chair pretty frequently in order to feel like she can have her breath. It seems to me and Annie that Mom may be "fighting", continuing to believe that she will be turning a corner any time now and starting to get better. We're both sensing that maybe that's why she's so adamant about not using medication because she wants to be toughing it out and wants to have a clear head for this fight she has ahead of her. We keep having thoughts about whether it would be better for Mom, whether it would be more fair to her, to talk to her frankly about her prognosis... to explain that we're really pretty certain that she's not going to get better... and in fact, that what's happening is that it's getting worse. In all fairness to her, shouldn't she know that so she can better prepare herself mentally? I don't know. I remember my sister-in-law telling me about when her father was dying from esophageal cancer... and no one in the family wanted to tell him how sick he was... when he died, he had had no time to prepare himself mentally, no time or chance to communicate his final wishes or thoughts with his family, no time to think about it in that light. She has always felt that she did him a disservice by not telling him the truth. I guess that's what's running through our minds. I don't want to look back and think "maybe Mom would have been better served to know what was happening". We've all been in denial for so long, trying to remain optimistic for her, and with her. But it's not like her optimism is continuing to shine through and we're thinking about dashing her hopes! There is NO optimism anymore... it's just this anguish... every waking moment is spent in anguish.... with Mom continuing to feel like she just has to push through it. Wouldn't it be better to tell her that she's not going to push through so let's all start working together instead of letting go, becoming free of this awful state and having peace? Um, answers, please?

A Quiet Spell

Mom seems to be doing OK on the Ativan around the clock (every 4 hrs). No need for morphine or anything else right now... we're just continuing the patch for her excess secretions. It seems that her facial muscles have become weak enough that she has trouble getting her mouth closed... I think I said that already... which makes it hard to swallow ('member you tried to do it?) So the time is a little quieter because she's able to relax... but I have to say, some of her symptoms are getting scarier. The choking and breathlessness are more intense. Yesterday was the first time the nurse ever checked her 02 level when it was lower... at first it was 89%... then it came up to 90% and 91%... I think the last reading was 92%. I checked it again late last night and it was back up to 97%. It just keeps seeming like as much trouble as she's having getting an effective breath at times that her level is going to start to reflect.
Had a great shower yesterday morning... continues to be the highlight of Mom's days. The massage therapist had to cancel but will be coming Saturday morning. I believe Dave's sister, Phyllis and her husband Stan will be visiting from Philadelphia on Saturday as well. Waiting for a big snowstorm today so we probably won't be walking today. Annie and I talked about maybe trying to get Mom out and go walk around a mall or something. I know Mom gets frustrated with her lack of activity options! We'll have to see if she's up to it or not. Not much else to report for now... just busy trying to keep Christmas "normal" in the middle of everything else. Prayer to Irm today... it was 2 years ago today that she lost her mother.

A Better Day

So today's the first full day with the Fentanyl patch off... and it seems to be helping. Mom no longer has the "freaked out" look plastered on her face all the time. It's almost like once she can sense the sedating effect of a medication, she tries all the harder to fight against it. That seemed to be going on the whole time she had the patch on. So she's been agreeable to having Ativan every 4 hrs around the clock, and even though it becomes pretty evident once we pass the 3 hour point because she starts to cry out and become more agitated, it seems to help her well overall. Mom had the healing touch people visit today. Their visit is usually a half hour but today she didn't want them to stop so they wound up staying for a full hour. They don't actually really massage her but they do very light touch that's mostly intended to relax her. That's really the best we can do for her right now is find things that relax her. She loves her music and pretty much has it on all the time. On the TV it's channel 833 and it's called "soundscapes"... it's just a music station that plays quiet piano music or nice soothing voices singing. Sometimes she'll ask for a movie on but she can't really focus on it or follow it. Sometimes she'll ask for the music station which usually helps her to fall asleep. When she's in her room, we have her ipod playing its "RELAX" playlist over and over again. It's a very soothing room, with the music and we recently put a little space heater in there to warm it even more. It tends to be a little chilly since the doors are usually closed. I think I mentioned the tropical beach towel hanging in the window which she never wants us to move. It's really something to see what kinds of things have become important to Mom since she's been stuck inside of herself unable to communicate. She has new attachments to things and very strong preferences about the way things are done and the things she wants around her. It must just feel like at least these FEW THINGS are predictable to her and within her control. I just can't imagine being so totally out of control.
While it's helped to remove the patch and Mom is able to be a little more calm, the trouble with her breathing and choking is seeming to continue. She's having a lot of trouble clearing her throat and we're still having to suction her quite often. She started wearing a patch on her wrist that's supposed to help dry up her extra phlegm and saliva, but it's hard to know if it's really doing anything or not. She's having more scary choking episodes... they're really just awful. She just has no strength in her throat at all. Even her mouth and lips are so weak that sometimes she can't close her mouth without help. Have you ever tried to swallow without closing your mouth? You need much more muscle than when your mouth is closed. We did talk today to the nursing supervisor at the hospice agency... we tried to ask her our questions about treating Mom's "pain"... be it mental or physical, and how do we know when is the right time to think about using morphine regularly? The nurse told us that "pain is pain", doesn't matter what kind of pain it is. She said to continue with the Ativan on the schedule we're on... and if it seems like Mom needs something more for either agitation or trouble breathing or pain, then to give very small doses of morphine every hour or every couple hrs. The trouble breathing is very scary... and I think it'll only get more scary. It feels very important to be prepared and to have thought out and talked about what we're going to have to do. Annie asked Mom tonight, in one of her "fits", if she feels like she's just "had it"... she asked if she felt like she was tired of fighting this fight... Mom gave us a very clear "no". She's absolutely fighting. She's is living the most courageous fight any of us have ever witnessed.

To Sum It Up...

I'm not even sure what to say or write about the last few days... I'm sorry to have been out of touch. Lots of company. It's definitely harder to get to the blog when there are so many people and so much commotion. Mom is definitely having a bad stretch. We tried the Fentanyl patch a few different ways, a few different dosages, and finally decided with the help of the hospice nurse today that it's just not working. We all became afraid that this totally "freaked out" look in Mom's eyes which seems to be there all the time when she's awake, may be due to the Fentanyl. It seems that she started with this bad, "freaked out" stretch at the same time as that medication, maybe it's a coincidence but it was enough to make us all agree today to take the patch off and resort to back to our old stand-by, Ativan. We all agreed that Mom's anguish is more mental and emotional than physical pain. But she's definitely having a hard time. We're performing suction to her mouth and throat pretty constantly, she's having many more episodes of choking and being really unable to clear her throat, which feels very scary while it's happening. None of us are very sure of how to help except to thrust Mom forward in her seat and try to suction as far down her throat as we can. It's truly awful. She is pretty much crying out all the time that she's awake and doesn't seem at all able right now to calm herself in order to focus on conversation or communication. It's seeming less and less possible to "reason" with her and she remains very resistent to medication. Every single dose of any medication that she takes is a struggle. We've pretty much decided that "there will come a point"... we don't know what it is yet... but we're hoping we'll recognize it when it's upon us! There will come a point when we can no longer trust Mom's ability to make any rational decisions for herself and she'll be completely dependent on us to decide for her when and what medication is appropriate. It sucks to become the parent to your parent.
Adam came up on Sunday and helped with the lift to Mom's shower. On a brighter note, Mom LOVES her shower... she's been getting carried upstairs consistently 2x per week and she absolutely loves it. She's warm and content and quiet and cries out with anguish once she realizes that we are finally forced to shut off the water when the hot has finally run out! Adam called before he came and asked "How's Mom Doing?" I found myself just completely unsure about how to answer that question. I feel like I just have no perspective on how she's actually doing. It keeps feeling like we're just never settled into anything predictable. I wish we were... the only thing I know for sure is that the only way to manage this is to stay completely fluid and just know that from one minute to the next, we have to be ready for whatever it's going to be like today... and whatever it's like today will be very different from what it was like yesterday! It's totally unpredictable. I don't know how Mom's doing. Her vital signs remain stable, her oxygenation level is always in the upper 90%... I think today it was 96% when the nurse visited. Blood pressure is good, her pulse is always high... I think it was 118 today. Her skin is great... she's been sitting on a new Roho cushion which is like the "Cadillac" of support surfaces... intended to prevent skin breakdown. She says it's very comfortable and she doesn't seem to need to be scooted up in her seat quite as often during the day. She's still getting 4 cans of her feeding every day... and we were able to replace the little rubber stopper on her g-tube today since it was just about all the way broken. She 's well cared for, Mercy does a great job during the overnight and calls us if she ever needs help. Annie and I are mostly just around all the time during the day, Mary's been visiting since Friday so Mom's getting lots of loving attention. I think though, after these few days, we're all kind of at wits end a little bit. At least today it was warm and we were able to get in a good walk. We even stayed outside and sat in the warmth and sun today after the walk. For a minute there, it even seemed that Mom might fall asleep sitting outside. It was nice to see some sunshine on her beautiful face.

Just Wanted to Share This Picture......

Another Day

Seems like maybe the Fentanyl is starting to help Mom a little... she had a little bit of room for some smiles yesterday which we haven't seen for a couple weeks. She also did less crying out and a little more resting comfortably. Annie and I gave a shower yesterday which we could tell Mom thoroughly enjoyed. We adjusted the sprayer so that it was partly on "jet" setting and let it run on her shoulders for a while, she definitely liked that... her muscles are SO tense in that area. The awesome thing about the massage therapist coming 3x per week is that every time we turn around, she either coming today or tomorrow! So she's coming again today and Mom really loves that. We're also going to start back next week with the healing touch duo one day per week. Hospice nurse was here yesterday, all Mom's vital signs are good, her oxygenation is still good - mid-90%. Mom's lungs are still clear and the nurse thought she was breathing a little deeper than previously. We were able to get my GI doctor to put us in touch with someone in the hospital who can help us with a replacement part for Mom's feeding tube. The little plug that closes the tube is hanging on by a thread... it's all those little things! But that one, thanks to the favor from that doctor, seems to have been resolved! We're finally going to get out for a walk today... it's been so brutally cold we haven't walked at all this week... then yesterday was just raining all day! Mary is driving today, hopefully the conditions will hold out until she arrives here safely from Vermont. Tomorrow we're expecting to see Aunt Martha and Mom's college buddies Diane and George tomorrow for a visit. Planning on taking the kids to see a gingerbread house show tomorrow and so far, Phil and I have plans to have a Saturday night dinner/movie night out with some friends.

Here's a Halloween picture of Mom and Dave.

Mom's doing OK... some bit of difficult transition with the different medications... kind of feeling like we're "on our way" to some greater comfort, but not quite there yet. Annie arrived around noon today and is settling in. Great visit from my very foxy friend Nicola, her Mom and hew newborn son Aiden who was just 2 months old on 12/8. What a beatiful little baby boy, very grateful to be able to spend some time like THAT in this house right now. Some nice healthy new life felt good. Nicola is one of my oldest and dearest friends, my truest spiritual sister, for the last 20 years who is now living in Florida, just up visiting her NJ family. Thanks for doing all the driving, Nick. Irm visited with more beautiful casseroles... including our favorite "Gussie's" mac-n-cheese. The outpouring of love and support is really amazing. When I was back in the school nurse's office yesterday picking up Chloe, they had just learned about Mom living with us and were so sympathetic and so eager to help and provide information and resources and everything... and when I thought about it, I was honestly able to say to them "I think we're OK, we've got all the right resources in place and have really all the right support." That's really thanks to all of you... all of Mom's dear friends and family and all of you out there praying and sending your healing thoughts. This is such a tragic time... one that just seems to be lingering on... and it's really amazing how beautiful people come together to help each other during these times. Thank you to all of you for helping to teach me how important it is... you've all taught me forever now how important it is to show up. It reminds me of a cartoon I saw shortly after 9/11/2001... it showed a "before" picture of the NYC skyline... it was black and white and in the middle were the Twin Towers... then the "after" picture wasn't black and white anymore... it was brightly colored red, white and blue... with no Twin Towers... depicting how incredibly the country came together during that time of crisis.

Anyway, Mom had her massage today, which she never turns down. Thank God for that wonderful therapist who is so generously volunteering her time three days a week. No real laughs, no real cries, just kind of a day of angst, hopefully on our way to settling in with some pain relief. It's hard... and I think this may be harder now for me and Annie to rectify... but it's difficult that we seem to be getting to the point where taking the best care of Mom doesn't necessarily mean giving her exactly what she wants all the time. I think I've said this before but there's such a fine line between granting her wishes and taking good care of her. I don't necessarily trust her judgment all the time to make decisions that are best for her... that's really difficult to say and I hope it doesn't come off the wrong way. But for instance, Mom will tell us over and over again, adamantly... that she has no pain. She's actually NEVER admitted to having pain. But the truth is that contracted muscles HURT. You can't have chronically tensed muscles, to the point that your fingers are all gnarly and bent and twisted, without having pain. It's just hard... the nurse practitioner in Mom's ALS doctor's office said to me last week that I should "be a little forceful" about having Mom begin to use the Fentanyl patch. It's hard. I mean to disrespect my mother in NO way, and it's difficult to go against her wishes, but her wishes are so fleeting and sometimes she doesn't even remember from one minute to the next what it was that she was feeling so strongly about. She sometimes just acts combative because she desperately NEEDS some sense of control! Who wouldn't?! So, it's hard to balance.... and Annie said it tonight, "I just don't like doing things she doesn't want us to do". I know, me neither. What can I say except AARRGGHH!!!!!

Inconsolable...

Mom's been inconsolable today, mostly due, I think, to the severe contractures in her arms and hands. It's just so bothersome to her and her muscles are so tight and tense all the time that it's practically impossible for her to relax. She finally agreed today to try some different medication which is actually geared toward pain... mostly she's just been taking something for anxiety. So today she started wearing a Fentanyl patch, very small dose, which gets changed every 3 days. So the idea is that a very small dose of medication seeps in through the skin over 72 hrs... this should help her to not get "snowed" by a big dose of medication all at once. As we were talking about it and trying to decide whether to use it, I told her that if we can help her be more comfortable, she might actually feel GOOD and be able to enjoy her company and her animals and her family... where right now she is just so distressed all the time that she can not feel any joy or relaxation at all. It takes 24 hrs or so to kick in... we have our eyes on the clock!
Picked Chloe up from school AGAIN today due to her stomach pain... and since we exhausted every possible internal perspective yesterday, I suggested we stop by and see my chriopractor on the way home. He spent 30 seconds with her and diagnosed a severe psoas muscle spasm (which is a muscle around the hip that, for women, actually runs very close to the ovary... which is why her pain is right there). He adjusted her... and quickly recommended some deep tissue work which we went and got right away. This is an amazing woman who used to work on me when I had bad back trouble. She was so right on in her treatment of Chloe... I'm so mad that we spent so much time, money and radiation on that stupid ct scan yesterday! Anyway, most of the trouble is FROM walking on the crutches which she started doing on Thursday night when she reinjured her hamstring... see? It's all connected! So at least we know what we're dealing with.
Annie's working on getting back up here to stay, not sure exactly when she's going to arrive. OK, Mom's crying bad, gotta go. 23 1/2 hrs to go until she has some relief.

Just Another Manic Monday

Can't say too much about Mom since I didn't spend ANY of the day with her today... got a call from Chloe's school nurse (2nd school day in a row...) to pick her up from school due to her severe abdominal pain. Friday we spent the afternoon in the ER where they did an ultrasound... normal. Visited the pediatrician Saturday morning... take Tylenol. Went back to the pediatrician today... see a surgeon to rule out appendicitis... saw him... have a CT scan... did that (for 5 hours...), everything seems normal. No idea, maybe some kind of virus that's causing lymph node swelling in her belly. Anyway, poor Mercy who was awake with Mom all night, then had to pull the whole day shift. I called her a couple times and Mom was doing fairly well. She had her massage therapy today, which she loves (by the way, I forget if I wrote this already, but the massage therapist is going to be coming 3x per week starting this week!) I called my dear-do-anything-for-you-friend Judy, who's a nurse, to prepare Mom'd midday medication in my absense. When I got home, Mom was actually fine... spent most of the day in bed after the massage but no worse for the wear. I did talk to the hospice agency today and we got set up with some other medications, not as strong as morphine, for whenever Mom feels that she needs something.
Annie called this morning to talk about how difficult it is to be back home and to be away from Mom, when none of us know how much longer she's going to hang on. The long and short of it is that Annie's coming back up tomorrow night and is going to stay through the holiday. Mercy and I worked this evening to rearrange the downstairs so Annie can have a bedroom. I know exactly how hard it is to go away and then to be away after having been in the middle of taking care of Mom... I don't blame her at all and I'm happy to have her here. Anyway, Mom's calling, gotta run.

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.