Author: althea

Aug. 31: 9:15 am.  I woke up to sunshine and cool air drifting through my open window.  As I lay in bed, appreciating the loveliness of the morning, I wondered where Mom was and how the evening had gone.  All night I had dreamed that she had died and I’d been trying to figure out how we were to all going to be OK.  Lying there in bed, and actually, now as I sit and type on my front porch, I have a stronger sense of being loved by everything around me.  The tree feels maternal…the wind seems to caress…

So I talked to Mom and told her that I didn’t know how I was going move forward and make her absence OK for all those who need her.  I don’t know how I am going to make things OK for Michael and Maretta and Joe and Dad and Terry and for everyone who loves and needs her so much.  So I asked for her help.  I asked her to assist not just me but everyone in her circle so we can all help each other and make this OK.  I don’t want her death to be a detriment, a blackened mark in our lives.  I don’t want me or the kids to be lesser, sadder people because of this loss.  I know that not having her here, with us, guiding and inspiring us is a loss and a sadness that we will always have.  But I’d like us to find opportunities for this massive life change to make us deeper, more compassionate people who breathe life ever more deeply.  I hope that having lost the person who is the core of so much of what we do that we can find loving, wonderful ways of weaving that gap together so that we become a strong community with fewer members but perhaps greater spirit.

Aug. 30: 4 pm.  Not much to report on this afternoon.  Joe should come walking through the door any moment.  Mom’s been sleeping peacefully for the last six hours.  She had a period between 9 and 10 this morning when she was quite agitated and unhappy, but since that time, her breathing and snoring and body language conveys a sense of peace.
Photos from the day are in the gallery.

I crawled into Mom’s bed with her again this morning for a while.  Mary Read was here and sat by Mom’s bedside until about noon.  Her daughter, Katie, is getting married on Saturday, so she had to leave to return home.  Terry came over in the late morning, and Maretta and Kyle also came at about noon.  Maretta has knit about four feet of a shawl in the last week to help pass the time.  It’s so long now that it covers her toes.

Bryan came again for lunch, and Maretta and Kyle stayed with Mom while Terry and Bryan and I went down to the beautiful cafeteria to have lunch.  After lunch, we pretended for a while that it was just a normal, nice afternoon, and while Terry stayed with Mom, Maretta, Kyle, and I went to Carl’s Cakes to keep an appointment to test possible wedding cakes.  They were yummy.  My favorite was the lemon poppyseed.

When we returned to Hospice, Jack and my friend Anne were here, and so we got to visit with them and they got a chance to see and talk to mom.

This afternoon, Mom has been very peaceful, but her breathing continues to fluctuate between slow, easy sleep or snores and a more disturbing gasp between long moments of quiet.

4:45 pm. I’m on my way home here in a few minutes.  Joe and Becky arrived pretty recently, and Maretta is going to stay at my place tonight.  I think that we have several visitors expected this evening, and the plan is for Dad and Tom to spend the night here with Mom again.

It’s hard to see Mom seeming to lose her grip on life, but it’s much harder for me to see the affect that is having on all those who love her.  I’ve received dozens of emails from people seconding the idea that Mom has been the center, the hub of a tremendous network of people.  And we’re all hurting together as we prepare to say goodbye.

With love,
Althea

Aug. 30: 9 am.  I just arrived here this morning with Mom’s friend Mary.  There was little activity overnight.  Mom was pretty restful and Dad said that she was only restless and agitated briefly around 2 am.

When I left at 6 am, Dad had recently arrived.  Also, Mary Isaacson and her son Donald, past neighbors from the other side of our duplex, came by to visit Mom.  Mary brought a frame for Mom’s room with the pictures from Mom’s last Christmas card…a picture of the four of us kids and a photo of Mom and Dad and Andrew.  It’s a nice reminder of happier times we all had together.

Julie and Kevin took Dad to The Great Dane for dinner last night, and Michael came over to stay with Mom for the evening.  Dad went home around 10:30 to sleep for a couple hours.  Tom came in the late evening and stayed with Mom until I arrived in the morning.  Dad also came back at about 2 am and slept in the chair next to her through the night.

I took Mary Read home last night.  Bryan made us all a yummy dinner, and after a while, Maretta and Kyle came over to visit too.  I had a nice talk with one of Mom’s friends, Debbie Riccio.  Then for a few hours, I worked with Joe and Terry to set up plane flights for Joe to return home.  He’s flying in to Milwaukee this afternoon, and Becky is going to go pick him up.  Just so everyone knows, I don’t think it’s worth bothering with “bereavement fares.”  From what I’d read, they are often higher than normal tickets, and when I tried to get one for Joe, the ticket cost $250 more than the price I could get normally.

Mom’s developed a cough and a bit of a rattle in her chest at times.  It’s a beautiful day today, and I’m torn but hoping that Mom doesn’t have to struggle down this difficult road much longer.

Aug. 29: 6 pm.  I’m about to head out for the evening.  My dad’s sister, Julie, and her husband, Kevin are here now.  Mom’s friend Mary came up from Chicago and is going to stay with me tonight so she can see Mom again tomorrow morning.  Mom’s cousin, Paula, and her aunt, Carol also came over to visit.  They helped us put a nice foam pad on Mom’s bed to help her rest more comfortably.  Becky and Terry have stayed all afternoon, sitting out on the patio or sitting near Mom.  And Terry’s neighbor, Connie, came over again to see Mom this evening.

Dad’s driving back from Monroe…he was down there visiting his parents today.  He and Michael and Tom are going to work something out so someone can be with her and able to quickly respond to her throughout the night.

Today felt quite a bit like yesterday.  It seems that Mom’s condition has been relatively stable for the last 48 hours.  It’s kind of a relief to be able to take a breath here for a moment.  It also feels like some strange flower-filled twilight zone.  Fortunately, Mom snored while she slept today, which sounded very home-y and reassuring to me:)
Until later,
Althea

Aug. 29: 2 pm.  Mom’s room is full of beautiful flowers.  Daisies, sunflowers, glads…they brighten each table and bring such spirit into this lovely room. Dad brought some CDs and Mom’s Williamsburg blanket from home.  Feels more homey with the sounds and sights of Dennis Drive filling the room.

Becky (Joe’s girlfriend) came over around noon today for a visit. Bryan had brought lunch, and Terry arrived a few minutes earlier.
Becky told my mom about the wash cloths she had knit in the last week since Mom and Maretta re-taught her how to knit.  Soon after she and Terry arrived, Mom sat up and had several moments of intense anxiety.
This seems to happen every so often (every 4-6 hours), and it’s really hard to witness.  She sat up and moved like she wanted something or wanted to go somewhere, and then she would cry out in long, wailing keens.  The staff here have told us that this can be due to physical pain or discomfort, but it can also be because she is grieving heavily for herself and for all of us.  It really feels to me like it’s grief.

It’s really hard to witness her going through these intense moments.  I held her in my arms and we all touched her and talked to her.  After a while, we got some anti-anxiety meds and some pain meds.  A while later, she had a second episode, and Bryan held her for a long time.  Since then, she’s been sleeping peacefully again.  A reiki masseuse came by to offer Mom a treatment.
She gave me one too.  It felt wonderful.
That’s the update for now.
~Althea

Aug. 29: 10:30 am.  I’ll try doing this post again.  There are few things that irritate me more than trying to re-create something that I had written and proofed and thought done.  Oh well!  It think I’ll just pretend I never wrote that earlier post.  This is the first time I am sitting down to write an update of the morning.

I got here a little after 8, and when I peeked in the door to Mom’s room, she and Dad were both snoozing away in the quiet, darkened room.  So I waited in the nice sitting area across the hall until Dad woke up and the doctor stopped by.  We talked with the doctor about Mom’s pain med needs.  On top of the difficult journey she is in the process of undertaking, Mom also has a bladder infection.  I think that it has caused her quite a bit of discomfort and has led to some of her moments of anxiety the last day or so.

So we’re dealing with the bladder infection, and I helped the nurses this morning get Mom washed up and wearing some pjs.  Flowers have been coming into her room, and there are lots of sunflowers and lilies, which makes me happy.

11:45 am. I was just on the phone this morning with Joe for quite a while.  He’s at Bowdoin in Maine, and we just talked about everything that is going on here and how everyone is doing.  His classes start tomorrow, and he’s kind of wondering how he will possibly get his mind around a new set of courses given the life-altering things that are happening here at home.  Joe’s an amazing person, and he’s showing so much maturity and fortitude and empathy through this whole ordeal.
That said, I’m surrounded by amazing people.  I feel really lucky to have a community both here and afar who are pouring love and support on us all.  I think I received about 30 emails yesterday from my friends and most of Mom’s friends and family members…  It helps hold me up.

I’m feeling a little brighter than I was this morning.  While I was coming in to Hospice this morning, I was overcome with a feeling of general weariness.  I just felt like there was this big weight filling my whole torso that just wasn’t going to go away.  The fact that Mom is still here with us makes me grateful, and I’m really trying to appreciate these days of knowing that she is here and I can talk to her and touch her.  But I’m also becoming increasingly aware that she is not going to be here long and that things in our lives are never going to be the same.  I ache so much for my siblings and my dad and Terry and all Mom’s dear friends and siblings and her Mom and our extended family and everyone who is hurting right now.

Mom has made so many peoples’ lives brighter and more gracious and more true.  I feel like she’s had a positive impact on the lives of so many people.  She’s been so open about inviting us all into her circle.  My mom is the hub of a huge web, and I so hope that we can find ways of binding ourselves tighter together to keep our web intact without her physical presence at our center.

It hurts so very much to contemplate life without her.
Not just for myself, but for my children and my siblings and their spouses and children, and my poor dad, and so many of us who rely on her for her solid advice and for the way that she can subtly positively impact all our lives.

It’s just such a sad time.

Mom’s been resting very peacefully, breathing evenly and slowly for the last hour or so.  I’m glad I can sit next to her as I think through a lot of these thoughts.  It feels good to be in her presence.

With love,
Althea

 

Aug. 29: 10 am.  I just wrote a long post about Mom’s status and my thoughts and feelings, and when I hit “save” my connection had timed out, and it disappeared.
So I’ll attempt to re-create, but I need a moment to step away from the computer so I don’t smash it:)
~A

Aug. 28: 6:00 pm.  It’s been a full and long day today.  Hard to believe that when I walked in the door at 8 am this morning that I had never been here before.  This afternoon, Mom had several visitors, and she surprised us by responding verbally to most of them.  Peter and Marci brought Mom’s mother, Mum, to visit early this afternoon.  Before she left, Mum talked to my mom, and Mom opened her eyes and some form of communication passed between them.  That’s a first over the last three days.  Then when Peter said goodbye, she said “hi Peter.”  She also said, “hi” when Dana and Terry’s neighbor Connie visited.

Maretta and Kyle just came in.  Maretta hasn’t seen Mom since Sunday, and she’s having a really hard time coping with the rapid and downward changes in Mom’s health.  It’s such a sad time.

8:45 pm.  Maretta had a nice visit sitting next to Mom.  At one point, she told mom that she loved her, and Mom whispered back, “I love you too.”  It was a remarkable moment for me, because since Saturday I haven’t seen her say something like that.

Bryan brought Andrew by after work today, and he and I got in bed with Mom for a few minutes.  Mom said his name, and I think she knew he was there.  Andrew kissed her hand and said that he loved her before he left.

Maretta, Kyle, Bryan, Andrew, and I all went out to dinner after leaving.  Michael was on his way over, and Terry and Dad were still there with Mom.  Bryan had offered to go back and spend the evening with whomever was still there, but it turned out that Tom came over too, so Michael had company to pass the time.  Dad is planning on staying overnight again in the rollaway bed they have set up.

I am going to return to Hospice tomorrow morning and spend the day with Mom again.  Overall, today was a good but rather exhausting day.  It feels good to have a day with no major medical crises or major decision-making necessary.  Just a lot of adjusting and crying and talking and coping.

Mom hasn’t wanted or had anything to eat or drink since she threw up on Sunday night.  She’s been getting fairly regular doses of an anti-anxiety medication and occasional doses of morphine.  The medications seem to help.

That’s the update for tonight.  Until tomorrow,
Althea

Aug. 28:  1:30 pm.  I had a very nice, quiet morning with Mom.  I came in to the Hospice Center at about 8:15 this morning.  Dad had left just a few minutes before with Michael.  From the notes Dad left, it looks like Mom had a relatively restful night, punctuated by a few episodes of anxiety or restlessness.  When I arrived, she was sleeping peacefully.  I opened the windows and the doors and let the sunlight and morning breeze spill into the room.  I sat on the bed with Mom and told her about the beautiful morning.  I curled up with her and talked to her and sang her songs she likes.  She hasn’t eaten or drank anything as far as I can tell for the last 24 hours, and she didn’t respond at all to me, but it felt really nice to be able to hold her and stroke her hair and to tell her how I feel and that she can go when she’s ready.

A bit later in the morning, Mom’s brother Peter, and his wife Marci came by to visit.  They were followed by Michael and Terry.  I got on Mom’s gmail account to get emails that I can read to her.  Then Terry and Michael and I sat out on the beautiful private patio outside Mom’s room.

A doctor came in to check out Mom, but she wasn’t interested in being touched, so he just made sure she wasn’t wanting medication or anything and then we talked for a while.  He said that one thing that is probably happening to Mom is that her liver is breaking down from the cancer.  That means that her body isn’t able to filter the toxins from her blood system, and she’s getting a buildup of ammonia and other non-healthy chemicals in her body.  The physical effects of this match what Mom is experiencing…exhaustion/fatigue, irritability to communicate, anxiety, etc.

Apart from a couple startling moments when she got up to go to the bathroom, Mom’s been resting pretty quietly today.  She hasn’t wanted, but we have been encouraging occasional use of an anti-anxiety medication, but her alertness and responsiveness doesn’t change at all even when she is off all medications.

I posted some photos of Mom and of her room on the website.

Aug. 28:  7 am.  It’s been almost 18 hours since I was last personally tending to Mom.  After going home at 1 pm yesterday to nap, I ended up staying home for the rest of the evening.  I was on speaker phone while nurses were there a couple times.  Throughout the afternoon, Mom  was apparently sometimes very agitated and was trying to “get out.”  She also continued to be very resistant to any help or suggestions that she take food or water or medicine.  It sounds like the late afternoon and evening were a really tough time for the care givers.  Michael and Dad, Terry and Tom were there.

One thing we’ve talked about is how hard it is to have the dual role of care giver and relative.  Dad hasn’t had the space or time to allow himself to take in what is going on from the role of husband because he has been so consumed with caring for Mom’s moment-to-moment needs.  After declining (really everything but notably) the suggestion that we move Mom to the Hospice Center so Dad and Michael and I could have a needed break, Mom whispered to the nurse,”yes.”

So around 8 or 9 last night, they brought an ambulance to our house, and they took Mom to the Hospice Center in Fitchburg. Michael said it went pretty smoothly.  Poor Mom hasn’t been too cooperative for the last day or so, so I was worried about the move, but it sounds like it went alright.

It seems to me like Mom is in a similar mental place as I was when I was in labor with Andrew.  I retreated to what felt like a small, dark cave or tunnel where I felt like I was taking refuge from the pain of labor.  It was a major effort to pull myself out of that place to try to interact with a doctor or anyone.  Mom has been so mentally inverted the last day or two.  As I am getting ready this morning to drop Andrew off at daycare and head over the Hospice Center for the day, I find myself hoping that Mom will look at me when I come in her room.  That her eyes will register that I’m there.  That we could hold hands or cuddle or even talk.  But unless things have improved quite a bit since her move, I don’t think any of those things will happen.  My dear, sweet mommy has retreated to some place where she can’t reach out to us anymore.  Or maybe not.  I’ll see today.

Dad stayed with Mom at the Hospice Center overnight.  Michael was on his way to pick him up this morning.  Last night, Mom’s brother Peter and his wife Marci drove up from Iowa to be with us.

I’ll bring my laptop to Hospice today in case the center has wireless internet.  I’ve received some really nice emails from people in the last days and weeks.  Thank you so much.  It feels really good to know that so many people care about Mom and about Dad and about me.

That’s the update for now.
~Althea