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.

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!