A Happier Thought

I felt compelled to share a bit of a sunnier perspective this morning after last night's entry... Annie and I gave Mom a shower yesterday, which is a project... Phil carried her up the stairs and Annie and I carried her down after she was done. The shower is nice and hot, and we were both commenting during the shower about how good it must feel to Mom to be so warmed up... usually her warmth is a bit of an issue, being a "southerner" in recent years... and she doesn't like any covers on her, she doesn't like anything touching her arms or hands, and she often doesn't like her legs or feet covered. Her feet are often like ice-cubes and she doesn't like to wear socks. Anyway, whoever is NOT doing the washing during the shower is using the hand-held sprayer to keep Mom warm while she's sitting on the seat in the shower... she's kind of being warmed the whole time. So after Annie and I were done washing, I said "OK, Mom, all done..." and I turned off the water preparing to dry her off. As soon as I turned off the water, she cried out... indicating clearly that she wanted the water back on. Her face and head were down and she was all huddled up sitting on her chair, but she was clear that she was NOT ready to get out of the warm water. So we turned it back on, glad for the clear direction from her, and kept warming her under the water. After another 5 minutes or so, we asked her again if she was ready to be done... and she just looked up an gave a little laugh, telling us again that she was very content. Content. If we could have had enough warm water, Mom would STILL be sitting in that shower. It felt so wonderful to FIND something that could feel good to her, and how good must it feel to her to be able to feel good and content, if even for those few minutes. She's been getting a real shower twice per week, and none of us ever even realized that she had a particular feeling about it... that's the bitch about the loss of words and communication, you just can't tell anything that she's feeling or thinking unless you THINK to ask her that particular question! Anyway, glad to have learned that. The other thing we were thinking about as we spent that extra time warming her up is how much she likes the massage therapy and how good that feels and how far it goes to helping her relax. So we asked her and she agreed to have someone come 2-3 more times per week to give her more massage. I worked with a nurse who was a massage therapist on the side, and I'm going to contact her on Monday and see if she'll come a couple times a week to work on Mom. That felt like the right focus... comfort measures. We might not be able to give her what she wants, we might not know what she wants or what she's thinking, but we CAN do things for her that feel good.
The other thought I had this morning, as I was dropping Annie off at the airport, is this thing that Mom always used to do anytime we were parting... anytime I was dropping her off or she was dropping me off or we were leaving each other, at an airport or at our houses or whatever... she would always look as long as she possibly could, waving good-bye until we were truly completely out of each other's sight. That always felt like such a loving gesture... to not just drop off and go... but to keep saying good-bye for as long as you could. She could be all the way down the street in her car driving away, and be barely able to even see me standing at my front door, but I could still see that she was turned all the way around, looking behind her and still waving until she was completely out of sight. I loved that I always knew she would still be looking... I though about that as Annie was leaving this morning... I'll have to remember to mention to her so we can look for each other next time. I guess it comes from having to say good-bye to family so often since we're all so spread apart... the parting is always so sad, and somehow that little gesture keeps you together just a little longer.
Anyway, we're letting Mom sleep in today, I asked Mercy to maybe not start the morning care quite so early... she's usually bathing Mom by 8am. I remember learning about this illness that it's not uncommon for your days and nights to get mixed up. Maybe that's been part of the problem is that we're expecting she's going to get tired and go to sleep when we do! Maybe she needs to be on a different scheduled.
Love to you all.

Rough Coupla Days...

Rough couple of days with Mom... it feels like her agitation and frustration is at an all-time high. Couple of sleepless nights, Mercy actually said that last night was her worst night here so far. Dad and Mary left to go home yesterday morning, Annie has a flight home tomorrow. I miss everyone terribly when they leave. My brother and Ladylove got engaged this morning, and Chloe and Annie and I went to look at bridesmaids' dresses for Annie's wedding. There's a lot of happiness... we have to just keep walking forward. For all you prayers out there, and even those of you who aren't... please just say a prayer for Mom tonight that she has a restful night and that her suffering is kept at a minimum. Please pray that we can know how to best help her, because mostly I feel like we don't have a clue... the helplessness is just awful. Annie and I kept asking tonight if Mom was having trouble breathing, she seems to have trouble, from the sounds of her breathing and the heaving of her breath... but she keeps saying "no". She just can't get comfortable. Pray that tomorrow is a brighter day. Will write more tomorrow.

Happy Thanksgiving

(You'll have to read on to find out about THAT picture!) Sorry to have been out of touch for so long, it's been a busy week. My Dad and Mary arrived late Tuesday night and Annie arrived Wednesday mid-day. Adam and Chris joined us for dinner on Wednesday afternoon but spent Thanksgiving with Ladylove's family. (They're heading off to West Virginia this morning to meet Sidra's mother and step-father for the first time). It's so good to be surrounded by family, the house fills up with love all buzzing around Mom. She's had a comfortable week, but hasn't felt much like partaking in any festivities. We've had some good walks which she definitely looks forward to and wants every day. Several times, as there was hustle and bustle and as meals were taking place, we asked her if she wanted to come and join in, sit in her wheelchair in the kitchen or with us while we're eating or anything at all... but she always declined. She is seeming a bit more withdrawn and less engaged this week, maybe it's just not noticeable with more people around. We've all noticed it's a bit harder to get a smile out of her, she's wanting to be in her own quiet most of the time. She spends most time in her bed with her soothing music on, and spends some time n her chair with a movie on or with the soothing music station on in the background. Usually movies seem to make her eyes heavy and she falls asleep. She is making better use of medication to help her not feel so frustrated and restless, so I'm sure it's partly due to that.

We were able to have a beautiful Thanksgiving dinner, thanks mostly to Mary and my Dad cooking everything! We were all able to give thanks for our togetherness and for this incredible family love. We were able to remember Dave and hope that he's resting peacefully (although Annie maintains that he's up in Heavin "shaking things up" up there!) He's certainly alive and well within this family and we had lots of good memories of him. It's always hard to know how Mom is coping with the loss of him. I think she's mostly afraid to delve into any more sadness than what is on her plate any any given moment. I think she also stops herself from crying when she can because she can't really manage the tears and stuffy nose very well without help. First holiday for Annie without her Dad, we're glad she could be here with us. We're hoping to do some bridesmaid dress shopping while she's here (she's getting married in April!).

Family silliness is always good for keeping the mood light... Adam is especially good at that. At one point, as my Dad was remembering how silly Howie Mandel used to be with the latex glove over his head... Adam decided to give that a try... stretching it over his bald head and blowing through his nose to inflate the fingers like a cockscomb. While we don't recommend anyone try this at home, it was great for a laugh! Unfortunately, these are the depths to which we stoop during these desperate times!

Dad and Mary are driving back to Vermont this morning and Annie will be here until Sunday. Aunt Martha will visit on Saturday. Hope you've all had a wonderful Thanksgiving holiday with your families.

Heavy Hearts

Gosh... I've had to write and rewrite this entry a few times already! It's just a particularly blue day and I seem to be having trouble sugar-coating it! So, having said just that... everything is going OK. This is a picture of me and Mom during her surprise 60th birthday week on Sullivan's Island. What a great time that was... we all totally surprised her with a party, including her best friends, and all of our staying for a whole week... Dave even arranged with her job for her to be off for the week. It was a great house right on the beach with a pool... good time. Today was a bit of a warmer day and we were able to get out and have a good walk in the new wheelchair without too many layers on. Mom is seeming a bit sleepier these last few days but was able to be up in her chair most of the day today. Adam, Ladylove and her son, Chase came up for the day yesterday, as well as Mom's good friend from childhood, Renee, and her daughter, Rebecca. Renee is awlays a bit of sunshine... she's easy to be around and likes to laugh and be happy. Adam gave a lift into the shower so Mom got a proper washin'. We all enjoyed yet another beautiful meal from my good friend, Irm. I told her she's my casserole-rock-star!! (Irm, I just can't thank you enough... you'll never know how much I appreciate these meals at this time.)

I know I've said this before, but I continue to be thankful for Mercy being in our lives at this time. The better I get to know her, but more I appreciate her open and caring heart. She is really very intuitive about Mom and I don't ever get the sense that she thinks about this as a "job". She has a very genuine and open nature about her that often helps to create the most amazing groundwork for beautiful conversation among the 3 of us. Tonight she was talking about things she can tell about Mom even though Mom can't talk to her... and she's often right-on... with her comments about Mom's strength and easy-going spirit... tonight she lay the groundwork for me to be able to tell Mom how many beautiful gifts she has given to me. I'm very glad to have had the chance to tell her that... it's been on my mind, wanting to tell her how many gifts she's given and how very precious they are to me. I was able to tell her through talking to Mercy, which helped it to not be a sad or sappy conversation, but somehow joyful and loving. I think it must be helping to have her be able to be a mediator of sorts... helping us to say things that maybe we'd never get to. I don't know if that all even makes any sense... anyway, I'm just trying to say that we're lucky to have her with us. She's very conscientious and intuitive and has good ideas about Mom's care.

So we're readying for the holiday... Mary and my Dad are coming tomorrow night and staying through Friday, Annie is arriving mid-afternoon on Wednesday and staying till Sunday. Since the dining room has been converted into Mom's bedroom, we've decided to set up a table in our family room and have our Thanksgiving dinner there. Friday night, Phil and the girls and I will go to Phil's sister's for a post-turkey day dinner.

Wishing you all a wonderful Thanksgiving season... give many thanks, and don't forget to say the important things to the people you love.

First Day with New Wheelchair

New fancy-schmancy wheelchair got delivered last evening, too late to go out last night. Mom was on it first thing this morning though! Aunt Martha visited and helped with the trip into town. We bundled up and loaded into the car... we saw a tag on the new wheelchair that says it weighs 55 lbs... no small feat! But we bundled up, loaded up and headed off to the library in search of new movies. Our library has a great new wing, great handicapped access, great media center. We picked up about 7 new movies and opted against a stroll around town because 1: it's way too cold, and 2: we didn't quite time the outing correctly with Mom's feeding... we couldn't have made it much longer before she needed to eat. So we loaded up, drove home, unloaded, unbundled and got back in bed. Mom is opting mostly for time in bed these days, she isn't too able to get very comfortable in the chair without needing constant adjustment and readjustment. Had a visit with Aunt Martha for a while and then a pretty quiet day... until the witching hour... which feels like it's gone on longer than usual tonight. Mercy is a real trooper and knows at leat as well as I do, if not better, what Mom is needing most of the time. It seems in the last few days that her right thumb, which we've always counted on for her "thumbs up" which indicates "yes"... doesn't seem to be working as well. Now we kind of just have to watch for a slight movement of the right arm at all, but she told me today she can't really do thumbs up anymore. This does make the yes's and no's harder to tell apart. Especially if she's in bed, she isn't as freed up to shake her head back and forth to say no as she would be sitting up in the chair. I keep trying to hang on to a meditation I heard once... where you just envision yourself "floating" down a river, being carried by the water, and making sure to NOT try and grab on to any roots or rocks you might see on the bank of the river... just float. I think of that often... I don't know how it's going to be from one day to the next, so trying to count on regularity or normalcy or predictability will NOT work in this case. We just have to float and try to not hang on to anything that might have been there yesterday, it might not be the same today. I try to get this from Mom too... she's always been a good "floater", able to just go along for the ride, able to be the tail of the kite, realizing always that her view and her ride was probably better than it was for those of us who have had a need to steer!

Adam's coming tomorrow for a visit and shower, and Mom's good friend Renee and her daughter Rebecca (who I haven't seen since I was probably 9 years old!) Chloe's finally agreed to give up her crutches today, she's very anxious to get back to dancing... we'll have to look into a physical therapy eval on Monday and see if we can get that going for her hamstring. Molly's over her little cold/virus from this past week but has come down with pink-eye in the last couple days. Dogs are fine, the shuffling of them from room to room, through gate after gate is becoming a little more routine.. althought my cats are crapping in my houseplants (I imagine they're probably literally having the shit scared out of them by these two huge dogs in their house!), and Phil's putting in record number of hours vaccuuming and raking leaves!

A Big Smile

Here's Mom on the beach, Jersey Shore, 2004.

I'm so thankful to have these extra services provided by the hospice agency... once per week, Mom gets a visit from a volunteer massage therapist and once per week, she gets visited by the pair of healing touch volunteers. The massage therapist came today for the 2nd time, with her tube of non-scented oil/lotion just for Mom. She stayed for almost an hour and a half, and when I walked in after she finished and asked Mom how the massage was, she was SO relaxed... and she made her "yes" sound, the one where her face is all relaxed... and a beautiful, relaxed smile spread across her face... the likes of which we haven't seen in the last few week it seems. It was so heart warming and just made me so thankful to have that kind of help that can come in and just provide an hour of feel-good, especially since it can feel like day in and day out, we're not really able to bring her that feeling. Most of the time, even if Mom is seeming OK, and she might just be lying in bed and watching TV or listening to music... if I walk up and ask her "are you OK?"... she'll usually shake her head "no". And OF COURSE she's not OK... but this was just such a nice smile, for just those few moments, she could feel OK, she could feel as good as she can feel. The therapist didn't want to skip next week, even with the holiday, since she feels like she's just getting to know Mom. I'm thankful for her dedication and for her volunteering her time in such a meaningful way.

Adam drove up last night in order to carry Mom up the stairs so she could have a "proper" shower. He wants to come every Wednesday as well as every weekend. What a lot of driving, takes him over an hour, I think he got here around 7:30pm last night. But it was a good shower... even the best bed bath can't come close to having hot water run over you to clean you.

We had our walk today, the wind wasn't blowing nearly as hard so it didn't feel as cold. Still waiting on the souped-up wheelchair before we attempt any longer walk. Right now we're just going around our long block, probably 1/2 mile or so. Even though Mom can't talk about it, I know she likes the walk, she's very clear to ask for it... we always know that's what she's asking for when she says "no" to going in her chair AND "no" to going to bed... that's how she tell us... she means "NO, offer me something else, I don't want either of those choices!"

We're not really watching movies like I thought we would... I think we went through all the ones I borrowed from the library, but they didn't really get watched... only played. Mostly, it seems that Mom prefers having her "soothing" music on to watching a movie. I don't think she has the focus or the attention or the comfort to be able to watch a whole movie. More and more she just likes the music. Mercy was trying to work the ipod the other day to get Mom's music back on, but she accidentally landed on "Dancing Queen"... That was definitely NOT what Mom wanted to listen to. I never knew my mother had such strong feelings against ABBA. They rock!

Thursday, 11/18

Such a cold and blistery day here... Mom still wants to walk every day but we're needing more and more layers, which she isn't used to. South Carolina this is NOT. We walked today and I love giving her that outdoor time, I just don't know when to be concerned that it's not good for her. With her arms so contracted, it's very difficult to get anything on her upper body like a coat or long sleeves. Today she had on her usual t-shirt, a sweat jacket over it, then we wrapped her in a big crocheted poncho, warm mittens and a hat, sweat pants and a blanket wrapped around her lower body. I try to ask her a bunch of times while we're walking if she's warm enough but she kind of becomes truly "speechless" while we're out. Molly is home sick again today (3rd day this week) and by the middle of the day we decided to go out for a bite to eat with one of my girlfriends. Mom became very upset and was crying very hard that I couldn't take her with me. My girlfriend, Judy, was my matron of honor when I got married... and Mom and Judy and I spent a day together before my wedding, running errands... I remember we had a nice girls' afternoon, Mom really liked Judy. I don't know if that was on her mind today, but it broke my heart to have to tell her she had to get left behind. It was almost enough to make me stay home, but I know I have to get myself out sometimes for my own sanity. I don't know if she was remembering that afternoon, but she just didn't understand why I couldn't just quick throw her in the car with us. I tried to explain that it just wasn't that easy to be spontaneous like that, and that she wouldn't be comfortable sitting in her wheelchair... but nothing I said mattered. She just wanted to go out with the girls. What a true tragedy.

It was enough, however, to make me call the hospice nurse and ask her to get us a high-back, reclining wheelchair (what we have now is just a "transport" wheelchair, intended for quick trips from car to doctor's office, etc) so we can take longer trips out and she can even be up in it in different rooms of the house if she wants. The tragedy is that in her mind, she doesn't think of herself as a sick person. She doesn't seem to always understand what the limitation is. How can she be that sick when your mind is rearing to go? Judy said she'd be happy to help after we get the wheelchair, she can come over and help me with Mom, maybe just go to the mall for a cruise around. I find malls a particularly fun place to be, especially right before the holidays! (NOT!!) Judy's a nurse too and took care of her own mother for many months at the end of her life.

The healing touch duo of Peggy and Debbie came yesterday and did about a half hour of healing touch work on Mom... they said, fortunately, none of her energy centers were particular congested... THAT'S a big relief! It must have been very restful to Mom, she was able to fall asleep and become very relaxed. They're going to come back next Tuesday. Massage therapist is coming back tomorrow... so regularly on Tuesdays and Thursdays we'll have some good relaxation.

The nurse came today who regularly supervises Mercy and we had some talk about some of the difficulties in adjusting to sharing your home with someone who has such different cultural practices. I don't have any trouble with most of it... but yesterday, I walked down into the basement where Mercy has her bedroom... and she had a bunch of her special fruits and vegetables kind of spread out on the carpet, all in a neat row... um, ripening? I became a little concerned about the amount of food and food stuff in the basement, not wanting to attract any critters. I think we also decided with the nurse that we may need to call back in some help from one of the home health aides available to us through the hospice agency. Mercy and I have it down pretty well, but the times that Mercy needs to go downstairs and rest, don't always work out for me trying to balance family time... like her dinner break tends to be right around 6pm. Well, that's an absolute witching hour in this house. Kids are in the middle of homework, after-school activities and dinnertime. I find it impossible to be fully available to everybody for everything they need at that hour. But I know, especially because Mercy is not getting solid sleep overnight, that she needs to be able to take her breaks. The nurse recommended setting a schedule so we both know when the other is most available. I always hesitate saying anything because I don't want Mercy to take anything as a complaint of her performance and then have her not feel like taking such good care of Mom. It's a very fine balance, I guess. But anyway, maybe if the other aide can come in from 1-5pm 3x per week, then at least on those days, I can focus on getting my kids situated while Mercy is having dinner and showering. We'll see. It's all just such a learning experience.

But overall, I think Mom is feeling OK. Her arms are definitely looser with all the stretching she's getting. She's loving the walks and isn't talking so much this week about her homesickness. We're going through lots of movies borrowed from the library... just wishing it were May instead of November. Talk soon.

Monday, 11/17

Had a great weekend with Adam and Annie... one that truly drove home the importance of family. In the end, it really is all we have. Lots of good time with Mom, I think we're much better at keeping her laughing when we're all together. Annie really has a gift for impersonating ("indoginating"?) the doggies and what their voices would sound like. She truly channels the dogs and what they might be thinking and saying.... it's an absolute riot. Mom really gets a kick out of it. We've continued to go for a walk outside every day which she has definitely come to look forward to. Yesterday, we even made an attempt at a family outing. We talked to Mom about maybe doing something like this every weekend when Adam and Phil can both be around for the heavy lifting... she's all for it! We piled her in the car, almost having to pack up like you do with a newborn, kind of ready for anything and bringing everything you might possibly need for comfort... and drove out west into Chester/Long Valley. There's a great farm out there where we like to take our kids sometimes... it's a farmstand with a few fields of live animals; goats, sheep, horses, chickens, rabbits and pigs. We bought a few bags of carrots in the stand and fed the animals. It would have been a great time, Mom would probably have loved sitting and watching the animals for a while, but it was too flippin' cold! It was a very windy, cold, brisk day and we don't want to chance any illness! She absolutely liked being out and had some good laughs in the car... just being in the middle of everybody was always fun for her... especially Adam and Phil who tend to just feed off of each other in a very funny way! It was just a good reminder that even though we're all bracing ourselves for the worst which has yet to come, Mom is still very much alive and living and wanting to be out... she does not want to be sitting here, day in and day out. We talked about next weekend maybe taking a road trip down toward Adam's house... to Point Pleasant to visit Jenkinson's Aquarium (Mom is a huge fan of the aquarium) and then maybe taking a dip in his hot tub. She liked this idea... it's a bit of a long car ride and it IS November... so we'll just see what happens. But the exerience has certainly helped us to be clearer about our intentions at this moment in time.

Adam is going to start coming on Wednesdays as well on as on the weekends so Mom can get a proper shower in the middle of the week. Chloe is getting along with her injured leg. Doggies are settling in OK... we take turns walking them with us. Daisy comes one day and then the chows come the next (although Daisy pretty much gets to come even when the chows come... just cause she's so easy and walks off the leash... so I guess what I mean to say is that every other day the chows get to come... I can't help it! They're such high maintenance!) Thank you all for your comments and emails. I read every word and appreciate your support more than you can know. Please pull out your old photos. The photo at top of page is Mom holding baby Adam.... probably his first summer, so 1971. The always was a stylin' beach babe!

Family

Here is a picture of Mom with Adam's son, Chris, taking a plunge during our Italy trip, 2006. (Please send your pictures!) It is such a blessing to be surrounded by so much family. Annie, Adam and Chris all arrived around noon today. It feels so good to have Annie here, especially because I know how difficult it is to be so far away. It seemed like a good idea at the time to have Mom here so Annie could have some time to grieve her Dad and to settle matters and care for the house, etc. But she is so far away from all the rest of her family, it makes me wish we could all be together.

Another rainy day in NJ... but despite the rain, Mom wanted another walk this morning. Mercy and I even tried to convince her to wait a couple hours, wait until Adam and Annie get here so we can all go together, we'll get soaking wet... but Mom wanted to go! And we did! And we did get soaking wet! We put a plastic rain poncho over Mom and she stayed relatively dry, and even though her face couldn't tell us, I believe that she was enjoying being outside. It was a warm rain, not cold... unseasonably warm for November in NJ. We'll try to walk every day. Aunt Martha arrived mid afternoon, nice that she comes every weekend, I know Mom appreciates the family connection.

The days are tough with Mom. We make the best of each day, but she has great difficulty getting comfortable and achieving any kind of relaxation. She is so determined to make the best of it with as little medication as possible. I know every time she does take any medication, it's with great angst. It's hard to accept that sometimes. It seems like it would be so much easier for her to just get the help with sleep and with relaxation and with pain, but I can tell she feels there is honor in being stronger and toughing it out. We have to just respect that and obey it and do our best to help her. She is an incredibly strong woman, and we all continue to learn about grace and beauty from her every day.

A Nice Friday

Here's a 6/2006 picture of Mom at the pool at our villa in Tuscany. Still a rainy time in NJ but Mercy and I got Mom out for a great walk yesterday. There was a light spray of rain falling... not drops, just mist. Mom was definitely up for it. As we were walking, I think we ALL realized how nice it is to be out of the house that we're going to attempt several times per week. (Mercy suggested every day... I think that's what we'll shoot for). Poor Mercy though... she's not a very in-shape person and I'm afraid that even that walk around our block gave her some back trouble. So last night, in the middle of settling Mom in for the night, we had to get Mercy stretched out! She and I had a long talk yesterday... I've been feeling like I wouldn't be surprised if I woke up one day and she was packed and ready to leave. She makes comments to Mom sometimes like "Oh, I can't stay here, I can't take this". We talked about it and she explained to me that she feels like she and Mom get on just fine but then every time I walk in the room, Mom cries or needs something that Mercy couldn't give. I told her the story about when I was 9 and I was in an accident that ruptured my spleen... I had to have surgery and spend a night or two in ICU after my surgery... I was completely petrified. I remember the next morning when Mom and Dave arrived to visit me... and to see my mother's face, I couldn't even speak. I immediately began to cry at the sight of her. She ran up to me and was right away trying to figure out what was wrong thinking I was in pain... when Dave said "I think she's just glad to see you." That's all it was. I was just so glad to see her that I cried. I tried to tell Mercy that my mother will always have more to say, more reaction, more needs for me just because I'm her daughter. She told me that she's afraid I'll think she's not doing a good job. Obviously that's not the case... I do ask Mom pretty regularly if everything is good with Mercy. She always says "yes". Even last night I had to ask Mom... "does it bother you when Mercy is singing her gospels that loud?" But Mom said No. Mercy does a lot of praying and singing and is quite loud about it... but here again is my mother teaching me to see the beauty. Once she said it doesn't bother her, I thought "Oh, good, yeah, I guess it's kind of beautiful".

So the walk was good. Mom also had a visit yesterday from a massage volunteer who works for the hospice agency. Her name was Kathy and she was wonderful with Mom. She's going to come once a week as well as we'll receive visits from a "healing touch" volunteer once a week. I guess that's like a very light massage aimed at moving around healing energy. Mom's open to it, that's all that matters.

Mom didn't get out of the bed yesterday... maybe she was tired from the walk and the massage... and then the early evening hour hit and that's just always a tough time of night. We're beginning to recognize it together so at least we can know it's "normal". She told me yesterday that she's very homesick. She misses her home and her things and there's definitely part of her that wants to be there right now instead of here. I just can't imagine what she feels... her whole everything being all turned around, and now so much is unfamiliar. We'll all continue to do everything we can to help her feel at home. I'm sure part of it must be her feeling that if she were home, she'll feel again like she did 2 months ago... which was definitely better than she feels today!

Chloe pulled her hamstring and ligament in dance class on Thursday night and has wound up on crutches, no gym or dance for 2 weeks, and she'll need 2 weeks of physical therapy. She really did a job. That was a little bit of a "wrench" but we're learning to just take things as they come.

Rainy November Day in NJ

Here's a picture of Mom and Dave at Halloween a few years back. Annie got this picture from Dave's good friend, Jim. Those of you out there who have pictures, PLEASE SHARE! What a fun way to spread the beauty of this woman! Please send them to me (sibona@optonline.net) and I'll post them. Give me any deatils you can, like dates, circumstances, etc. Anyway, Mercy and I had talked to Mom about getting out for a walk today and maybe a couple times per week... but this has been the most dank, rainy day. No outing today. Mom opted to get back in bed by about 2pm again today, had a little trouble getting relaxed again, but at least we're beginning to know that that's our routine. The afternoon/evening is harder than the morning. Hopefully tomorrow will be sunnier and we can get out. She also said she might like to get in the car and take a ride through the countryside. The dogs are getting on OK, I'm actually getting to know them a bit too. Took all 3 dogs for a walk this morning (before the rain) in the woods. Cubby and Blacky were obviously on their leashes and Daisy just kind of ran along. I've never been in the habit of leashing her unless absolutely necessary... she's actually scared to leave my side! So that was good... helped Mom's dogs to run off some energy. Phil's still in Baltimore, coming home tonight. Calm day. I went to the library last night and borrowed a bunch more VHS movies for Mom to watch so we started the day off with Jerry McGuire. Irm had brought a big tub of movies when she brought Mom her big TV for her room... but we've watched just about all of them (except for WWII: A Music Video... sorry, Irm, definitely saving that one for some kind of "special" day!). Looking forward to Adam and Annie this weekend. Please send fun pictures!

Wednesday, 11/12

An end is in sight to this bad 2 day stretch. Mom had a rough time with comfort and agitation for the last couple of days. No one got any sleep Monday night which made for a bad day yesterday. Finally last night Mom agreed to some stronger medication to help her calm down and sleep. It really worked well but I know how much she doesn't like to take anything. We'll see if she accepts it again tonight. Doctor also just prescribed a muscle relaxant to help her arms... the contractures in her arms seem to be where most of her discomfort is coming from. Just gave the first dose of that now. Today she's just relaxing, had a visit from the hospice nurse as well as from Mom's, um... how should we call him... childhood-friend, one-time-brief-college-romance, used-to-be-married-to-her-best-friend-who-is-now-married-to-her-ex-husband, attorney person. (Jim used to be married to Mary, who is still my mother's best friend... all the way from college... who is now married to my father).... so I guess he's kind of like my ex-step-father-in-law...??? Anyway, he came to visit and was very nice and tender with Mom. She cried, of course, at such a friendly face. Annie and Adam are both coming on Saturday. Offered to wash Mom's hair today but she made clear that she only wants it washed when Adam comes on the weekends and she can be carried upstairs to the regular shower. Phil's away tonight on business, promised the girls we'd have breakfast for dinner... a favorite when Daddy's away!

Monday, 11/10

Didn't get around to walking the dogs like I had hoped, but I think Cubby (in picture w/ Mom in April) is still recovering from her couple-mile walk in the woods on Sunday. She's moving a little stiff today and not wanting to move around too much. Anyway, other than that, it was as "normal" a day as there is! The social worker from the VNA, Mary Lou Daly, (coincidentally a childhood friend of Mary's sister!) - who makes monthly, and as needed, visits to all hospice patients - came today. She spent some time talking to Mom - through me - and assured her that we'd make her "as comfortable as possible". I always just WISH so hard that I could know how she is really reacting and feeling when people say things like that to her. I remember thinking the same thing when the doctor came for his initial housecall that first day. He calmly explained to her how this disease is progressive and that it will ultimately affect her breathing and how there are things we can do, some of which are invasive (ventilatory support) and some of which aren't (morphine), but that we would do whatever she wished in order for her to be comfortable. What is going through her mind? Is she sitting there still thinking she's going to beat this thing? Is she mentally preparing herself for this last bit of decline? Is she scared? Is she at peace? It's just impossible. And because we can't know, can't guess, and because she can't tell us, I never know how to approach it or what to say to her. I told Mary Lou today about a poem that I remember seeing floating around the VNA in some of our hospice literature, it's by Henry Van Dyke... and that I know my mom used to always enclose the same poem in sympathy cards whenever she had occasion to send one. I think about that poem often and wonder if it would bring HER comfort as she thought it had brought comfort to so many other people. Mary Lou suggested I approach it with her... but I don't think I can. What if she's TOTALLY NOT thinking like that? What if that totally freaks her out? My inclination is to do no harm... it's not my job to try and "make progress" or help her progress toward peace and acceptance, even though I truly wish this for her. I tried to even say to her the other day when her college friend was leaving and she was so sad for a while afterward... I tried to remind her that people come to visit because they love her so much. But even THAT feels to me like we're talking about her dying! I just don't know what to say, I wish I could read her mind. Tonight I was sitting with her on the edge of her bed and she was moaning and groaning inconsolably... as I was trying so hard to figure out what was bothering her, she started turning her head to her left. Turning her head and looking to the left. I was trying and trying to figure out... and I started questioning whether she was trying to show me something on the side of her head... I started worrying that I was missing some signal that she had pain. Is it in your ear? Is your hair tangled somewhere? Does your head hurt? It is your neck? I started massaging her neck and shoulder, cleaned her ear with a q-tip, moved all her hair to the other side of her head, changed her pillow, raised and lowered the head of the bed... Mercy came back in and started worrying with me... Mom was still moaning and groaning and becoming increasingly more frustrated, we were obviously NOT getting what she was trying to tell us! Mercy suggested we try to sit her up so she could look over Mom's head and neck and back... on and on and on we went... probably 20 minutes like this, both of us so scared we're not able to identify her pain! Mercy finally said "do you need to use the commode?" Well, yes. She wasn't turning her head to show me anything on her face, she was trying to LOOK AT THE COMMODE to signal that she had to use it. How much worse can it be? When she gets upset and frustrated, it's just impossible. How can she not be upset and frustrated? Here is the poem Mom always sent in sympathy, she always thought it brought comfort:

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other. Then someone at my side says: "there, she is gone!" "Gone where?" Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port. Her diminished size is in me, not in her. And just at the moment when someone at my side says: "There, she is gone!" there are other eyes watching her coming, and other voices ready to take up the glad shout: "Here she comes!"

Mercy turned 50 today, we helped her celebrate with a candle atop the littlest carrot cake you've ever seen, and a whispered rendition of Happy Birthday. She cried and cried and thanked us for making her day. She's a sweet spirit and we're lucky to have her help.

End of Weekend, 11/9

Here is a picture of Mom with my daughter, Chloe, and Adam's son, Christopher, in 2006 when we all vacationed in Italy. So sorry to have not written all weekend. It was a very full weekend, full of lots of love and family and support and help... and of course... tears. My Dad and Mary arrived Friday afternoon and we feasted on some of Irm's casseroles! (Thank you, thank you, thank you!... in fact, while we were eating, my dear friend, Irm, showed up at the door with yet another tasty dish! What a wonderful thing!) Aunt Martha came for a visit Saturday morning and was here while Phil and Molly went to her last soccer game. Mom also got a visit Saturday afternoon from her college friends, Diane and George, who drove from Pennsylvania. I remember seeing pictures of Diane in Mom's wedding album... and Diane brought a picture of her wedding where Mom and Mary were both bridesmaids! They stayed a while and had a nice visit. Mom seemed very content to sit in the middle of her college buddies. She napped on and off as she needed to and finally after a few hours asked to retire to the bedroom, she had lots of tears as they were leaving, but we just reminded her how much people love her. Adam and Ladylove were here on Saturday too and only just left an hour ago on Sunday evening. Mom got lots of pampering and record-number of arm-stretches! Adam and Phil carried her to the 2nd floor so she could have a proper shower which I think she appreciated. We figured we'd do this every weekend when Adam is visiting, Mercy will keep doing morning sponge bathing and I'll keep washing her hair once or twice during the week. Everything is going well with Mercy... a few bumps along the way... mostly to do with the doggies, but we're working to smooth it all out. Mercy let us know that she couldn't hack it with the dogs sleeping in the room with them. They were jumping on her bed while she was sleeping so they could see out the window and chewing on their feet NOISILY during the night. We promised Mercy that we would fix the problem, and we promptly went about trying to resettle the dogs into the kitchen to sleep. Since they were having so much trouble relaxing in there last night, we decided to make use of some "Rescue Remedy" which is a holistic "anti-anxiety" remedy found in our local health food store, safe for people and animals (FUN FOR THE WHOLE FAMILY!) to help them calm down. Not sure yet how well it's working but we'll keep trying to "normalize" it all for them. They've had some good walks in the woods this weekend and I'm hoping now that my kids are back to school this week, I can try to get them in a routine where we walk every day. My Daisy, on the other hand... back to the vet tomorrow with her oozing wound and abcess under her tail. She's still on the antibiotics, but the vet may need to place a drain or two to help her wounds to drain properly. She just keeps licking the one... which IS, after all, what dogs do... but is probably contributing to its constant drainage and bleeding.

Mom's been asking for the Ativan pretty regularly and I'm certain it's helping her to be able to relax and get some rest. She and Mercy get on well, Mercy is finding nice, gentle ways of communicating with Mom and we often catch her singing softly. And then when she's in her basement room by herself and we're all upstairs... she is NOT singing softly... she is down there totally getting it on with her Ghana-self! She's singing and carrying on and sounding like she's just having a blast! It's fun to listen to and is a testament to her fun-loving nature. So hopefully tomorrow can be the beginning of a nice stretch of some routine time. Annie is planning on visiting next weekend. Tomorrow (Monday) will be her first day back at school... she attempted to return last Wednesday but it proved to be too soon. She and Eric have been busy ripping up carpeting at Mom and Dave's house which will need to be replaced before they can move in there. I look forward to my Sister's visit, and I'm sure Mom does too. Thank you all for reading and contributing. I'll try to get back to writing every day, even though sometimes it feels as if there isn't that much different to report.

A Little Sunshine - 11/6

I've been feeling a little uncomfortable about giving Mom the Ativan at night, mostly because I'm not really clear how she feels about it. Something doesn't feel quite right about giving medication to someone who can't easily protest. I gave it to her again this morning, first time she's had it during the day, and while she seemed agreeable, I just haven't been completely sure. So tonight, she started to have increased restlessness again and Mercy and I were both having trouble helping her to relax. I asked her outright if she wanted me to give her some more medication to help her calm down and she almost gave a little laugh of relief.... which really surprised me but also relieved me! It was the first real true sign that she is willing to accept some "better living through chemistry"! It opened up the discussion about the use of this medication... I asked her if she wanted me to offer it to her more often, and she gave me a clear "yes". I told her she can have it every 4 hours if she feels she needs it, even though it doesn't right now seem that she needs it that often. Anyway, I gave it to her and it really works like magic for her. It's the only time that we're able to view a little Laura sunshine, the only time we can get past the ever-present distress. We even had a little joke about this constant spreading of her feet (it's one of those things that often keeps her awake at night, whoever is sleeping with her has to get up numerous times during the night to spread her feet apart so they're not touching)... anyway, I made a joke about how I thought there must be magnets in her feet and that's what keeps pulling them together. It must have struck her funny because she actually had a little happiness and laughter over the magnetic feet! It just warmed my heart. I wrote yesterday about how FUN my Mom is and how much she has always liked to laugh. That's the kind of thing that always made her laugh, just the silly stuff. It was nice to be able to see that little bit of her come through.

The rest of the day was quiet. Mercy is in the habit of giving a sponge bath in the morning but doesn't wash Mom's hair, which is quite long and silver and beautiful these days. So today I did the hair washing with the hanging bag system and the draining head tray. Worked OK. We also did lots of arm work and she wore her arm braces a few times... they're designed to help prevent further contractures in her arms. Starting next week, the hospice agency is providing a weekly volunteer massage therapist as well as a volunteer who is certified in "healing touch" work. Don't know much about that but it's a special kind of light touch designed to stimulate healing energy and bring about relaxation. Mom said she's open to try it. Mostly, I think just the extra hour of relaxation time will be good for her. Lots of family coming this weekend... my Dad and Mary as well as Adam and Ladylove. Mercy spent lots of time today preparing her food ahead of time...her Ghana cooking is quite interesting and usually smells delicious. Phil and I heard Mercy singing to Mom tonight as she was getting her into bed. We thank God for Mercy.

Wed, 11/5

Everything is going mostly smoothly at home these last 2 days. Mercy is taking good care of Mom. The lifting is quite intense for her and she seems to have aggravated an old back injury. I think tomorrow we may start using our new hoyer lift which is a hydraulic lifting device for just this kind of situation. We can probably use it for lifting back and forth to the commode and in and out of bed/wheelchair. But all in all, Mercy is very patient and caring and has good intuition about Mom and what she needs. She's gotten the feeding down and has learned all the little tricks to positioning Mom comfortably. We seem to be working well together, when she has a bad night with Mom, I'm around during the day to relieve her so she can get some rest. Then she's around later in the day when I need to be helping the kids and shuffling the dogs around between rooms and in and out of gates! Molly accidentally let Daisy into the kitchen tonight when Mom's dogs were there, there was another bad fight and Daisy got bitten on her opposite hind leg. I was thinking to keep her home until her antibiotics were finished, but I may wind up having to ask my neighbor friends to take her, medication and all. Mom's dogs actually fought with each other today which I've never seen before. I'm afraid Cubby got a good mouthful of Blackie's ear and they were full-on growling at each other. I'm sure they're pretty turned around about where they are and what they're doing here!

Mom seems to be doing OK, just not very able to get comfortable for very long at all. Right now it seems very hard to tell the difference between when she's saying "yes" and when she's saying "no". Sometimes I have to ask her again and again and I'm trying so hard to read her face but still can't tell which she's saying. Then when I ask too many times and she gets too frustrated, she winds up yelling her answer... which must feel to her like she's really TELLING me but I STILL can't understand! It's just all frustration, all the time. Alot of people have asked if we've tried a "blinking system" where she blinks once for yes and twice for no, but she really doesn't have the focus to do that. Her eyes are so WIDE and scared-looking all the time, I don't think she could do the blinks. Plus, mostly I think she doesn't want a "system". She wants to just be able to communicate! Sometimes I hold up my right hand for "yes" and left hand for "no" and ask her to look at one or the other. It's pretty easy to follow her eye movements, but more frequently, she seems to be getting confused about which hand is which or she'll look from hand to hand, like she's having a little trouble making sense of the command. I don't know. Can you imagine not being able to communicate even yes or no to the most simple questions all aimed at achieving bodily comfort? It's just the most frustrating thing I could ever think could happen to somebody. My Mom has just always been the most giving person... so giving of herself in such a patient and selfless way. She was always so fun to vacation with because she would just go along with whatever everybody was doing. She always just went along, that's how she was. In the middle of a big group of people all trying to decide which way to go, what vacation activities to partake in... she was NEVER controlling or demanding or selfish, she just went along with whatever everybody else decided, whatever sounded fun. In January when we vacationed in Hawaii... even though she was sick and not getting around well, she did everything! She went kayaking down a river to the Pacific Ocean, she went riding on an ATV through the red dirt of Kauai, and she put her sneakers on and walked to the beach every day. She went up and down the stairs from one floor of our house to another without complaint and at the end of the day she sipped her glass of wine while relaxing in the hot tub. She was always just so happy to be with everybody, she was happy just that we all got together and got silly and made her laugh. She was always happy to just be in the mix... laughing and being silly. When it feels like the most frustrating thing in the world that she is in this condition, we just try to remember her that way. She would NEVER want to be demanding, she would HATE that she has to be this way. You can still look deep into her blue eyes, you can still see her in there, full of love and laughter.

Monday, 11/3 - Have Mercy On Us!

Mercy, our new live-in caregiver, arrived around 10am this morning. So far so good. She's from Ghana where she has 3 daughters attending university. She works here so she can send her money home for them, and she goes home to visit every 2 years for 1 month. She has a big, bright, wide-open face and she, so far, seems very warm and very, very compassionate. She's actually been overwhelmed with emotion a couple times over Mom and her difficulty communicating. I have great hope that she will be a good person to help us care for Mom. Mom seems to really like her, makes good eye contact with her and has not had any problem with any of her care so far. Aside from having the help caring for Mom, one of the best things about her being here is that I can step away for a while and come back in with a fresh face and smile for Mom rather than just being all work and tasks for her.

Annie left a little after 1pm today and was planning on driving straight through, 13 hours, back to South Carolina. My thoughts are with you, My Sister, as you return home to this emptiness. Looking forward to your next visit over Thanksgiving. Before Annie left today, Mom was trying to write something over and over again on her whiteboard. We could tell that it was something that Mom desperately wanted Annie to bring back with her next time she comes up from SC. We finally identified that Mom was asking Annie to bring her walker with her. It's been several months since Mom has been able to walk with her walker. I hope that it's an indication that she's feeling hopeful and optimistic and well. There's really no point in her feeling any other way. I asked her if she was visualizing that she would be able to walk with it once Annie brings it back up and she said "yes". Annie and I both just said "OK, let's bring it!" What we wouldn't give to help Mom have her legs and her strength again. She loved to walk barefoot in the sand after a long jog or walk on the boardwalk in the summertime.

Took Daisy to the vet for her bite wound. She's on 10 days of antibiotics and some doggie pain-killers! She's definitely not herself today, and it's obvious she can't quite figure out why her nice little world has turned so completely upsidedown... but HEY, join the club!!! I think she'll stay home with us until she's over the injury then will go stay with our friends for as long as Mom's dogs are here. Not much else to report today. Mom had some Ativan again tonight to help quell the 8pm "witching hour"... seems to be a tough time of night for her, tough to quiet her mind and relax for the night's sleep. My Dad and Mary are coming to visit this weekend along with Adam and his ladylove, Sidra. Good Night, All.

Sunday - 11/2

Mom's doggies are here to stay, Mom's Cubby and my Daisy had an altercation today. They haven't been getting along and have been mostly separated in the house, but I guess we took our eyes off them today and Cubby got a good tooth-grip on Daisy's side. Daisy will definitely have to go stay with our neighbors for the time being. The cats, not sure yet. They may be wise enough to make themselves scarce. Time will tell. We've decided to keep the dogs here until Thanksgiving when Annie will be visiting again. By that time we should be settled in and should be better able to tell how it's all going. Most important thing is that it's Mom's wish to have her dogs around her. Adam and Annie and I spent the day tending to Mom. Annie and I visited the specialty surgical supply store in search of the right bed-bath accessories... found a 2.5 gallon bag that hangs over the bed and has a sprayer thing that helps you bathe somebody in the bed. We'll try it out tomorrow. Mom was mostly pretty discontented today, difficulty getting comfortable, more discomfort in her legs, wants her arms stretched out constantly. Annie and I finally decided to encourage Mom tonight to take something to help her relax. She's been very reluctant all along to take any medication, especially something that might alter her mood, but she is SO tense and SO agitated so much of the time that we were in agreement that she couldn't go on like this. She was agreeable to a small amount of Ativan which, so far tonight, seems to be helping to take the edge off. Hopefully she'll have a better night's sleep tonight than last night. Interesting segment on 60 minuts about a man with ALS who was trialing a device where you wear a ski-cap of sorts with a bunch of electrodes attached to it, and by simply thinking of a word, the word appeared on a computer screen. It was really amazing, will have to look at it more closely online tomorrow. It's specifically for people who are non-verbal, it can read your brain activity and translate it onto the computer where it can be read. Amazing concept. More tomorrow. Thank you all for following and for your comments and wishes. Please keep the support coming.

Saturday, 11/1 - Lots of Family Love

It's amazing how much more comfortable Mom is when there are plenty of us to go around. Many thanks to Aunt Martha who showed up first thing this morning and stayed while Phil and I went to Molly's soccer game. She gave Mom a great shoulder and neck massage that helped Mom to actually doze off in her chair. Chair has been great, Mom spent most of the day in it today, it totally enabled her to be out in the middle of the family rather than stuck in her room. A little more comfort today than yesterday. Annie arrived with the doggies around mid-day and much of the day has been trying to sort out the animals! Mom's two chows, Cubby and Blackie, got all shaved and groomed for the trip... but even in all of their groomed splendor, I think they probably won't get along with my Daisy. We're trying it out with some gates in an attempt to keep them away from each other but it's still a bit logistically challenging right now. My two kitties are a whole different story. I think they're better off just moving out lest they risk becoming somebody's lunch! Mom is definitely happy to have her dogs around her and that's what's important, her face totally lit up when she saw them. If we can help her have that wonderful comfort of home at this time, the rest can certainly be worked out. (Probably won't see much of Phil, however, without a vacuum in his hand!) Adam and Chris arrived shortly after Annie and Mom has been very well tended all day by her three kids. I find it much easier to have laughter and keep the mood light when Adam and Annie and I are working together. We're able to kind of have fun conversation around Mom... conversation that isn't so easy when it's just the two of us. That seems to help her feel lighter and maybe concentrate a little less on her discomfort. Many many mucho thanks to my good friend, Irm... whose mother I cared for in her final hours... who brought over MANY home-cooked casseroles and dishes to serve many people, along with a beautiful larger TV for Mom to have in her room. It has a VCR built in to the bottom and Irm and her husband put together a huge tub of VHS videos for Mom to choose from. That's a great comfort because the TV that I had put in there previously I think was too small for her to see very well. All little steps toward creating a comfortable environment. Annie had a good talk with Mom about some serious stuff during which Mom expressed to Annie that she would rather Annie and her fiance move in to Mom and Dave's house rather than put it on the market. Annie's going to sell her townhouse and live in Mom's house for the time being until the market is more favorable for the sale of it. Annie's doing an absolute beautiful and totally grown-up job of sorting through all of the financial affairs and making wonderful decisions about how to best manage everything. She's surrounding herself with all the right people to help her and, despite her own time of grief, is showing tremendous courage as she pushes on with all of the responsibilities that have landed on her shoulders. I feel very blessed today to have the love and support of my brother and sister, and feel honored to be caring together for our mother.