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.