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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

Aug. 27:  7 pm.  I’m feeling pretty ragged tonight.  I think the effects of being up last night and a really full, hard day.
I left Mom’s house at about 1:30 to go home to nap.  Mom had been sleeping and crying, but was generally very quiet from 5 am to 1 pm.  In the afternoon, Dad napped in one of the kids’ beds while Michael sat and kept watch over Mom.  It was a good thing he was right there, because at one point she decided to stand up and was apparently unsteady enough that she probably would have fallen if he hadn’t been there to steady her.

I called home at about 5:45 tonight, and the nurse was meeting with Dad and Michael.  They went up and tended to Mom, and gave her some liquid oral medication to help deal with anxiety and confusion.  We asked if we could have some too because we are anxious and confused.  The nurse didn’t seem to think that was a good idea.

I was on speaker phone for much of that visit.  It sounds like Mom will be staying at home tonight, and we may look at moving her to the Hospice center tomorrow.  In a little bit, I expect to hear back from Dad and Michael to work out a schedule for watching over Mom through the night.  That’s the pretty low update for now…
~Althea

Aug. 27: 12:20 pm.  Our Hospice nurses and social worker have recently left, and I finished making some initial phone calls, so now it’s time for a web update.  And the update is that we are going to hold tight.

The nurses and our social worker talked to us quite a bit about what has been going on over the last couple days.  They also did an examination of my mom up in her room.  At this time, they don’t feel like she has any care needs that aren’t being attended to here at home.

After last night’s events, my dad is feeling really overwhelmed and like she needs greater, more 24 hour care than what we are able to provide here at home.  Right now, though, Mom isn’t interested in moving from the bed at all and declined several suggestions that we move her to the Hospice center.

At the moment, Dad and Terry and Michael have gone out to get some lunch, Maretta is holding down the fort at my house, her fiance, Kyle, is on the way down to see her from St. Paul, and Joe just arrived with his friends from their multi-thousand-mile-trip to Bowdoin.  Mom has been sleeping for the last seven hours or so.

So we’re in a bit of a holding pattern. We have someone from Hospice coming by early this afternoon to help Mom do some self-care.  Then we have another nurse coming by this evening.  Michael and Dad and I are going to figure out a way of doing shifts so that someone is able to respond to any of Mom’s needs throughout the night while the rest of us get some rest.

The nurses seemed to think that in the next 24 hours or so we would be able to tell if Mom has hit a plateau of sorts or if she is going to experience more of a decline. In terms of care, the entire emphasis at this point is on keeping her comfortable and safe.  Feels like it’s been a big day already!

I’ll continue to update as the situation moves forward.
~Althea

Aug. 27: 7 am.  This sure isn’t easy.  I feel like with things with Mom’s health that we’ve been kind of feeling our way along and getting through half-days, making Mom comfortable and tending to her needs.  It makes it hard to see where we’ve been and where we’re going.  The last day or two, though, have been mostly unremarkable but overall pretty troubling and hard.

Mom’s become slowly but increasingly confused and unresponsive and so very, very tired.  Last night we called Hospice and spoke to a nurse because we were concerned about her confused mental state and about how little food she’s eaten in the last day.  The nurse was very kind but said that all the symptoms and signs that Mom is exhibiting are normal for someone in a declining state.  She has medications for pain and for nausea and for anxiety, so that’s mostly what they have for treatments for her right now.

I took Maretta home with me last night.  The last week or so has really worn her ragged, and I worry that she has reach the limits of her ability to deal with Mom and the situation at home for at least a while.

At about 3 am, my dad called me at home because Mom had thrown up in bed.  I came over to help him clean up, and a Hospice nurse came over around 4 am to check on Mom and to talk with us.
Mom is in tough shape, and for the moment, her approach to questioning reminds me a bit of Andrew…”No” to most questions…and that includes mostly queries about medicine or drink or blankets.  She says she just wants to sleep.

At this point, Mom is sleeping in bed.  Actually, in the baby monitor I have sitting next to me, I can hear both Mom and Dad breathing sleepily together.

Our social worker, Mary, and our RN, Jenny, are going to come over this morning…we should find out what time about 8:30 am.  I’ll post an update after our conversation with them.
~Althea

Aug. 26: Here’s an update straight from Dennis Drive.  Mom’s sleeping on the couch, and Andrew is not sleeping from his crib up in Joe’s room.  Hmm.  We’ll have to see if we can’t fix that.  The little guy needs a nap!
I titled this post “down days” because Mom has been sleeping a tremendous amount the last few days.  I think she might be taking a lesson from Liberty, the family cat, about good sleep habits.  Sleep 22 hours, wake for two.  Mom has had some perkier moments, but in general, even when she’s awake, she’s been pretty weary and hasn’t been “clicking” mentally as well as normal.  That’s pretty frustrating for her.
She’s doing alright.  Taking lots of pain meds and sleeping lots. Not much to report beyond that.  We’re all concerned about her, but she’s pretty comfortable, and I think we’re doing everything that can be done to help her right now.
I continue to be paged from the young one upstairs.  Signing off for now…