9.23.11

AYNSLEY:
Mom passed away this afternoon around 1:30pm. Dad was on the phone with me at the time; Gary and I were at the airport, waiting to get on a flight that was delayed by an hour. Ross was with her in her room at the Kline. Gary and I were supposed to be in the air, but due to weather in New York, we were able to just turn around and head right back.

So many family and friends came to us this afternoon; the courtyard was full of our support network. The nursing staff all came in to the room as we were leaving, wanting to show their support, giving everyone hugs and crying more than us.

My overwhelming emotion today is relief. I am so glad that our flight was delayed, that Gary and I were together, that this was at the end (though now middle) of a wonderful, long visit where I had lots of quality time with my mom. I'm relieved that Mom didn't suffer for days or weeks, that her decline the last few days was so rapid that she didn't really have time to be horrendously uncomfortable. Throughout the past 9 months, still the most uncomfortable I've seen her was those first few days in December at the hospital. This morning she was lucid, in and out of sleep, but still completely aware of her surroundings and who was with her.

Mom didn't want to have to say goodbye to anyone. So we didn't. We left everything at "I love you."

Today is the autumnal equinox, the first day of fall. Traditionally, this is a day for giving thanks, finding balance and preparing to turn more inwards. It's a time when we focus on our physical bodies, nourishing them with harvest abundance, and practicing feeling rooted to the earth. It makes sense that on today of all days, Mom realized her physical self was no longer serving her needs. That her spirit was too fierce for the broken body and needed to be released.

We are also a few days short of Rosh Hashanah, the Jewish New Year. There is a prayer that says that God chooses each person who will die in the year to come, on Rosh Hashanah it is written and on Yom Kippur it is sealed. Another story I've told myself is that Mom was on the list to pass this year, but God gave us the entire year to spend with her.

We are still working on memorial arrangements-I will post them here on Sunday when we finalize the details. In the meantime, we have fielded many questions about making donations in Mom's honor. We are so honored to even be asked this question and of course whatever charity you'd like to support in Mom's memory is such a gift. However, if you're looking for guidance, we can suggest a few that are very close to Mom's heart:

Solomike Early Childhood Center
To donate, please mail your contribution to:
Temple B'nai Torah, Solomike ECC
15727 NE 4th Street
Bellevue WA 98008

Metropolitan Seattle Sickle Cell Task Force
To donate, please mail your contribution to:
Metropolitan Seattle Sickle Cell Task Force
P.O. Box 20194
Seattle, WA 98102

Mom's Random Acts of Kindness (RAK) Group:
This is a group that meets once a month with a rotating host. The host chooses a charity that they'd like to support and presents their information to the entire group, educating them on what the charity does, how their money will help them and why they chose them. The group then makes an anonymous donation to that charity.
To donate, please mail your contribution to:
RAK c/o Eileen Putter
14011 SE 49th PL
Bellevue WA 98006

9.22.11

AYNSLEY:

As predicted, Mom did get a great massage today. The PT assigned to us now was a massage therapist before she became a physical therapist and came in today to give Mom a very enjoyable massage. (Mom had PT sessions approved through insurance and since she can't do any therapy now, might as well get a massage!) That may have been the day's highlight.

The lows were many. I spent last night with Mom. She took a Benadryl before going to sleep and slept for 9 hours straight, which made me nervous in the middle of the night. I kept waking up and looking over at her, making sure she was breathing and in a semi-comfortable position. Finally, at 5am, she woke up to go to the bathroom. She then slept in 2-3 hour bursts for the rest of the day, but when awake mentioned that she didn't want any more Benadryl. It knocked her out too much.

This morning was the first morning Mom didn't eat breakfast. Every day for at least the last six months, Mom has had a bowl of Cheerios with a chopped up banana in whole milk. Not an enormous amount of nutrition, but she always ate it all and at least we knew she had eaten something for breakfast. (On occasion, someone would bring her Starbucks oatmeal, which she would eat to mix things up, but most of the time it's the Cheerios). This morning she couldn't manage that. She had a bite of cinnamon bread, but that was it. Two bites of quiche for lunch and three bites of a tuna sandwich for dinner, with pieces of melon and nectarine thrown it. Ross mentioned that he was concerned about her lack of nutrition to NP, who gently said that often when a body is in decline, appetite goes away. Digesting food requires a lot of energy and blood is diverted from the lungs, liver and brain and Mom's organs probably don't want to spare it for a meal.

We were able to double Mom's oxygen consumption (now at 10L) by adding another O2 tank to her room and connecting the tubes to her breathing tube. This helped bring her oxygen saturation up to the low 90 percent, when yesterday and this morning they were hovering in the low 80s. She had another chest x ray and found more pneumonia, which will be treated with a different course of antibiotics starting tonight or tomorrow. Almost as soon as the second O2 tank was hooked up, Mom felt more comfortable. NP gently suggested that maybe it's time to switch our course of treatment to a more comfort-based approach, which comes with a lot more resources and benefits. We'll have a hospice nurse come check on Mom daily and whenever we call and already have had access to more people checking in to see what we need.

I know that hospice care is usually the last step in a person's life. But instead of being devastated by this choice, we all feel relieved and know it's the right path. Mom has clearly been uncomfortable the past few weeks and it's been very difficult for her to transcend the discomfort in her body. The past few days have seen a significant decline; on Tuesday, she was able to walk to the bathroom with a walker and today she can barely stand when being held up. Hospice is the best thing now; once she agreed with NP, which happened instantly, she visibly became more relaxed. As Gary put it, it's really the brave choice. And that's Mom all the way.

9.21.11

AYNSLEY:

I arrived at the Kline at 10:30 this morning to find Mom asleep after taking a Benadryl about an hour earlier. Mom's rash has been itching her a lot lately and she's been getting some relief from a topical cream, but NP suggested taking Benadryl at night to see if that helped, also. Well, last night it was the last pill to come in and since Mom had already brushed her teeth (she takes her pills in yogurt) and doubled her morphine, she decided to wait until this morning to take it. The good news: it helped a lot with the itching. The bad news: Mom was conked out all day. Seriously, all day-she woke up in thirty minute intervals, to use the bathroom and to eat fractions of her meals. She attempted physical therapy, but couldn't get any farther than sitting on the edge of the bed and doing some stretches: standing up, her legs would almost buckle and someone would have to hold her up.

She also had a little bit of disorientation, which I truly think was due to the fatigue and sleepiness. Everything she was saying made sense, she would just forget who was in the room. Her oldest friend was in town visiting over the weekend and just left today; about an hour after she left, Mom asked how long she was planning to stay in her house. Since it was just me and Mom, I asked her if she meant Gary and me in our apartment with the baby and she shook her head and said she was asking her friend, but then remembered that she had left. Things like that.

We'll have to wait and see if she is equally weak tomorrow not taking the Benadryl during the day-she agreed that was a bad idea. She has physical therapy scheduled with an actual PT instead of walking with the aide, so we'll have a better idea of where she's at.

And now, a digression: Last Wednesday we got the unfortunate news that Mom's amazing PT had been let go. This is a woman who had gotten Mom walking without a walker, using the white cane for the blind to fly up and down the hallways. She had built up her balance, core strength, leg strength, stability and was really responsible for all of the autonomy Mom had gained over the summer. When I think back to six months ago at my bridal shower, Mom was able to sit up in a wheelchair for about an hour. The last time I was here, three weeks ago, she was sitting up on the side of the bed, unpropped, for all of her meals, walking to the bathroom with a walker and standing alone at the sink (we'd spot her, but that was it) to wash her hands, wash up and brush her teeth. That was 100% due to her PT. We've all had a week to process her being gone and just can't quite come to terms with it. She is such a talented, knowledge and compassionate therapist; we sorely miss her. And I think tomorrow we'll miss her even more: Mom is clearly weaker than she's been in a long time and I trust her former PT so much to know what's appropriate and to find ways to help Mom in the state she's in. The replacements are all lovely people, but I know we're not going to get any more meaningful therapy. Oh, well, I'm hopeful Mom will at least get a nice massage.

9.20.11

AYNSLEY:

Today was a crazy, full, emotional day. Mom and I had a wonderful girl's night last night (which really just means sleeping a lot) and then were able to spend the entire morning together. Fabulous NP came in and chatted with us-Mom is going to start doubling her dose of morphine at night and stop with the oxycodon-this should keep her more comfortable for longer lengths of time and I always think it's best to not have to mix meds. Mom also noticed a little lump in her left leg, which is the one that's always tight due to surgery she had about 8 years ago. A couple of days ago, I was massaging it and hit a spot that made Mom jump-she noticed it again today and had an ultrasound to rule out a blood clot. She also has been having some lymph edema in her right arm that was looked at, too-again, to rule out clots. We should get those results tomorrow.

Mom had her bath this morning, which I always love. The highlight today was a shampoo! This is really the first time that I've been here when she has enough hair to wash and the aide who does the bath let me wash Mom's hair. I tried to be all salon scalp massage-y, though I'm sure it was woefully inadequate. But it was nice to be able to participate in that way. Bath day also means weigh day and, as expected, Mom has lost more weight. Her appetite has really diminished and she's fought nausea a few times this week. It seems to be short lived and she hasn't actually been sick, but that definitely doesn't help arrest any weight loss.

She napped a bit this morning and walked a very little bit this afternoon. It's a struggle to maintain an oxygen saturation above 90 even at rest, so exercise pushes her over the edge quite quickly. But she was in good spirits all day, enjoying her guests and chatting. The Kline's rabbi came in and we devised a plan for making Rosh Hashanah special even though Mom will still be at the Kline and everyday does sort of feel the same. As Dad often says, our life is sort of like Groundhog's Day. A round challah with raisins is on the list.

Dad is staying the night with her tonight, so Gary and I get to have some time to catch up and talk and I have an opportunity to unwind. Gary's work has a Seattle office, so he's working during the days, which is such an awesome benefit for me of his job. Tomorrow he'll go to work and I'll go back to the Kline to spend more QT with Mom.

9.19.11

AYNSLEY:

I arrived at the Kline today around noon, just as Mom was finishing up her chi gong session. This morning they practiced for about an hour, and she felt pretty good afterwards. About an hour later, Mom began PT, where she walked the hall a little bit (with lots of breaks as her oxygen levels fell) and rode the bike for seven or eight minutes, again, with breaks. It's a tricky balance, finding the right oxygen level for her comfort. Too low and she's dizzy, short of breath and anxious but too high and her nose dries out and she's uncomfortable too.

After riding the bike, we thought it would be nice to sit outside for a few minutes since the weather was nicer than it's been in about a week. It was still a bit too cold for Mom to be comfortable, so that was short-lived, but I still think even a few minutes in the fresh air are good.

When she got back to her room, Mom fell asleep for about three hours, the first nap of the day since at least 11am. When she woke up, she was really uncomfortable: her stomach was aching, her body was aching, she was nauseous...not pleasant. It took about an hour and a half, but slowly and surely she did feel better and was even able to eat a little bit of macaroni and cheese for dinner. Her appetite has dramatically decreased since my arrival on Wednesday; it's a bit worrisome for me.

We've had several visitors over the past few days and have even more scheduled through the end of the week. If you haven't yet made arrangements to come by, please don't. Mom is having enough trouble simply breathing; entertaining numerous people is a bit too much right now. I know that everyone has good intentions and, especially with so dramatic a decline, they want to rush in and see her, but it's overwhelming and not good for her (or me) right now. If you want to come, please please please let one of us know and ask if it's okay to come on a certain day at a certain time. If you don't hear back, don't come. And if you do hear back and someone says it's not a great time, please don't take it personally. As I've said, we've had lots of visitors that we're planning on-unplanned drop-ins really throw her for a loop.

Gary arrived tonight safe and sound and joined us for a casual dinner at the Kline before going to my parent's house with my dad. I'm so happy to have him here, happy to be spending tonight with Mom and happy to know that we still have a few days to all be together.

9.18.11

AYNSLEY:

Today seemed to be another status quo day. Mom is clearly weak-if she wants to sit on the side of the bed, as she usually does for meals, she needs to have pillows propped behind her to support her back and keep her upright. When she gets up to walk to the bathroom, we need to help her stand and keep her stabilized-I've taken to standing directly behind her when she washes her hands at the sink. She likes this, saying she's being supported by the Pea. And it is fine, it's just so many degrees behind where she was at my last visit.

It continues to be a struggle to breathe. Her oxygen machine is set to the highest amount it can give, 5L, at least a few times throughout the day. We all constantly remind her to take deep breathes through her nose (as that's where the oxygen tube is) to relieve shortness of breath and hopefully keep her as comfortable as possible. Though her lung capacity is the same or diminishing, she hasn't had the disorientation or confusion that I saw during my first night with her. Last night when she woke up coughing at 4am, she was 100% alert and requested her inhaler immediately, which I gave her and her breathing got easier.

Before turning in for the night last night, she requested oxycodon, the first time I've seen her take a full dose. I asked her where her pain was, concerned that it was in her chest again, and she just said "all over." I think there's a lot of general achiness and discomfort due to being in bed all the time now-her tailbone and lower back are often very sore. She asked me to help her stretch this morning, which I did, but she quickly realized it was uncomfortable and requested an ankle and calf massage instead. We did both, but the limitations of her muscles was a surprise to her.

Her appetite is low and she's tired a lot. She had a busy morning with visitors, but fell asleep for a champion nap from 3-6pm, which was great. She dozed on and off before that, but this was real sleep, which she needed.

I'm very excited to have Gary arriving tomorrow evening, everything is so much more manageable for me when he's around.

9.17.11

AYNSLEY:

Mom had a lot of visitors today, so she didn't have many napping opportunities. But she was so happy to see everyone that she didn't seem to mind. She drifted in and out of conversations and sleep throughout the afternoon but spent the evening alert and chatty. Though she didn't do any walking or physical therapy types of things today, she did sit upright in an arm chair on two occasions, the first one for close to an hour. Her BFF, who happens to also be a PT, recommended it for improving her breathing and Mom noticed the different right away. She said it was more difficult to breathe sitting upright in the chair because she was taking much bigger breaths-the bed allows her breaths to be shallow, which may be more comfortable, but not necessarily better for her body.

We keep increasing the oxygen level on her machine-now she's getting about 4.5 liters constantly and 5 liters when she gets up to walk to the bathroom. Today was day two of antibiotics for the pneumonia-perhaps they will help and she will be able to breathe a little bit better tomorrow.