Ups and downs and being a new auntie

    I started to write about the morning my mom died, but I just can't.  Instead I want to note that the first day I really felt like the world was a lovely place again was the day I got to see my new nephew.
    He was born October 14th and Furly and I went to visit him the next day.  His name is Cade Merritt Sullivan, and he is a perfect little fuzzy bean.  When he cries, his mom says, "I know, it's hard to be a human," and I think, "Don't we know it sister?"  Her own mother passed away the same day Cade was born, just a couple hours later. I can't imagine what the combination of those two experiences feel like.  The little one is grandmotherless and all his family grieving, and yet our hearts are lifted in his presence.
    What is it about a baby that brings us so much hope, even with the knowledge of inevitable grief and pain and death that comes with life?  Is it the unwritten story we can imagine and hope to watch unfold?  Is it reaching into the past to find our own stories written in their faces?  Maybe they just smell good and feel good; a device of natural selection so we don't just leave them in the woods. 
    I am so happy for my brother and his wife, and a tiny bit envious.  Don't get me wrong; I don't want my own children, but my brother and his wife have a family now that they can focus on.  All of my brothers have families.  We have mom's dog and four cats.  I am so lost right now without my mom to care for.
    So we do little projects.  We painted the front room and we're going to make it our bedroom.  I planted a few things in the yard.  We watch TV.  We eat.  We drink.  I try to get up every day and say, "What do you want to do today?"  For so long we didn't get to choose what we would do, it seemed novel at first.  Day by day it becomes more burdensome.
What do I want to do today?  Nothing. 

TO DO LIST:
Read
Write
Cry
Call about cat spay
Call Mom's CPA
Walk the dog

Grief at 27 days: cry cry cry

It has been almost four weeks since my mom passed away.  I have cried every day for six weeks, usually in the morning, but not always.

It's okay though.  Sometimes I am crying because I am mad: it seems so unfair that she had to die.  Some days I cry because I remember a time when I could have taken better care of her.  Mostly I cry because I miss her so much and I know I will never see her again.

I talk to her though, and when I do it's as though I can hear her in my mind, telling me exactly what I know she would tell me.  This should make me feel better, but instead I just cry harder.

This grief is like nothing I have ever experienced.  I feel like the shoreline, slowly being stripped away and changed with each passing wave.  Every day is a flood of memories, both good and bad, full of useless "what ifs" and "whys."   My mind is a train and I can only sometimes switch the tracks, and then I can go to work or talk to another person.  At home alone, I have no respite.  I wash the dishes, fold the clothes, sweep the floor and all the while my mind is barreling down the track.

So my husband and I try to go to the river every day, we snuggle with our little kitties and take walks and in general try to be kind to ourselves.  We let ourselves cry and we give ourselves time, but we pick ourselves back up and try to move on.  I think Mom would be proud of us and how we are handling ourselves even if every day I cry and say "I love you, Mom," and I don't know if that will ever stop. 

She's been gone 6 days and I am hurting.

She's gone she's gone she's gone.  
My head hurts and I can't sleep and all I do is sleep but mostly eat and drink and
one moment
I am being pulled in a hundred directions
people needing something needing comfort needing assurance needing decisions and also a shoulder and I am supposed to be the shoulder and shoulder the burden but I think I need something
and the next moment
I am alone.
And I miss her.

And I had to hold her dead and cold body while the overnight nurse yanked off her last soiled diaper.
And my husband helped the man place her on the cart, cover her, and strap her in
(Bring out yer dead)
And I wouldn't complain- no I'm not complaining- because there were many blessings
And I'll have memories to last a lifetime...

But I wish I could hug her
or sit and drink coffee with her and talk like in the old days.
She would tell me I put myself under too much pressure. 
She would tell me to try to have a little fun.
She would not be sick, but the fierce and tenacious woman who raised me.
If I close my eyes, I am almost there.

A bit about our hospice team and an emotional day.

     Yesterday was a weird day.  Mom woke up feeling good, which is terrific.  She also ate three separate times, albeit only a few bites each time.  She even got a massage from Velinda, the hospice masseuse; she often declines if her mood is no good, so it was another good sign.  She was awake for a full nine hours in row too; on the other hand, she slept the next fifteen in a row too.
     Anne, the nurse, pulled me aside and told me Mom seemed weak.  I cried a bit about how this was actually a "good day" compared to the weekend.  I did not say that I had cried all weekend.  Anne asked me if Mom and I have talked about the "end of life stuff."  We did, months ago, but haven't in awhile.  I also confessed I have no idea how to talk to my family about what's going on.  Anne gave me a number to price cremation and said Murray, the slightly goofy and unsettling, "bereavement counselor" will give me a call, (if Anne remembers to tell him).  She has the worst memory, but Mom loves her dearly.
     Mom named one of her kittens Annie, and says it is after Nurse Anne.  Anne loves Mom too.  She went to Disneyland on vacation, and brought Mom home some Minnie Mouse ears.  For three weeks, Mom wore her ears every time Anne came around.  Margarita, another health aide, loves Mom too.  Twice now, I have seen her start to cry when Mom was declining.  She turns away so Mom cannot see her, but I do.  She has come to see us twice a week for five months now, and she is truly incredible.  She can change all of Mom's sheets and clothes in the blink of an eye.  More than once Mom has said, "Don't you need to change the sheets, Margarita?" only to be told it had already been done.  Roxanne, or "Roxy" as Mom calls her, has only been coming for a few weeks, but you can tell Margarita likes working with her, so we immediately liked and trusted her.  She is supposed to be helping Mom get in her wheelchair, but after the first week and a half, Mom hasn't wanted to do that any more.  (She went for three wheelchair rides before it got too hard for her.)  
     When Mom admitted she didn't want to get in her chair again, she got very upset and started to cry.  She said she felt like she had "failed" us.  It was very sad, and of course we all assured her she had not failed us; that all we want is for her to be happy.  It was very emotional for all of us. 
      I am trying not to freak out, but I am super sad and anxious and my brain goes a mile a minute.  I am supposed to go away for four days this weekend, and though I'm sure she'll still be here when I come home, I feel guilty for not spending every waking minute with her, because "the end" seems to be looming.  She is encouraging me to go, but I can tell she is a little scared for me to be gone too.
    Well, I could keep going, but I have worn myself out, and probably whoever is reading too. 

LIFE IS PRECIOUS- EVERY MOMENT OF IT- BUT ESPECIALLY
THE MOMENTS FILLED WITH LOVE.

Rough week...

It's been a weird couple of days.  Mom is sleeping more, eating less and didn't want to get in her wheelchair at all this week.  She is tired and sore and confused.  She sleeps almost all day day and eats almost nothing.  The nurse and two aides came today, and I told them how much she had eaten and slept lately.  Anne, the nurse, said she was "concerned" about the amount of confusion Mom has, and Margarita got glassy eyed and said something about "when she declines"  she would cry a lot.  I told her I had cried all the day before. 
I am scared of how I will handle things in the future.  I already feel on the brink "losing it" most of the time. 
I'm also supposed to go on a weekend trip soon- one I have had planned since December- and already I am super scared of leaving Mom and Furly for four days.  I am freaking out.
I still can't sleep that well, I am drinking like a fish and wish I could get more of that Xanax my friend brought to me:  if I didn't have "responsibilities" I would be F-ing up a lot more than I am.  I would be looking for the kind of trouble I don't usually look for.  Again, I am scared about how I will be acting before too long.
Furly dreams of dead babies filling the lake, and I dream of packing up to run away but never quite getting there.
I want to be good and do right, and I am just scared, and so is Furly.  At least I am not alone in all of this.  He loves Mom as if she were his own.  I am so grateful for him and for the time I have with Mom.

I got to hear a choir sing today.

I attended my friend, Lisa Chew's choral performance today.  It had been a long time since I had heard that many voices together, (easily 40 people).  It was an awesome feeling.  The waves of sound washed over me like the ocean pulsing away at high tide.  I sat in the back of the concert hall and shed tears of pure joy, thankful for my ears and the acoustics of the wood and the shape of the room and the baby laughing in the audience, and the pure humanity, fragile and raw and vibrating for the sake of harmony and unity, spelling out the sounds of the heart and echoing the songs of the spheres.

There is little in this life I am more grateful for than music.  It stirs my deepest depths and brings me peace even where there would be none. 

More notes Mom at home on hospice

Awhile back a wrote a bit about having my mom come home on hospice care.  That was four months ago now, and rather than looking back and reflecting on what I was feeling then (I'll let you, the reader, do that) I'd like to tell you how things feel now to me.

I am tired all the time; tired, and grateful, and scared and mad and sad and crazy all the time.  I cry because I do not want to go to the store.  I want to sleep all the time, and I am scared to sleep all the time.  I yell at my husband at least once a day.  I pretend it is all his fault. 

Good things happen every day.  Mom went out in her wheelchair today.  The five of us- Mom, Furly, two health aides and me- marched up and down the sidewalk, talking about the pretty flowers and how our neighbors were building a fence- like it was the most normal thing in the world- like it hadn't been months since she was outside before last week- like we just tool around all the time with her entourage and it's no big deal.  We were like a little parade.  It was very jovial.  The health aides admitted they were glad to be out in the sun.  They had just attended (another) funeral.

We are lucky.  We have family that visits and helps.  We have the best team of healthcare folks you could imagine.  We have each other.  There are many things we can learn right now.  Every moment is full of possibilities.  That goes for all of us- the living and the dying.  Who is living that is not also dying?  Just because you are "dying" doesn't mean you aren't also living.

Also, we never really talk about dying.  We only ever say "What do you want to do NOW?"  We are squeezing life out of days and weeks and even months.  Sometimes I am tired though, and do not want my whole life to be about squeezing out Mom's life.  I start to miss my own life, and in that same thought I feel guilty.  And at the same time I feel proud because it is not so easy.  And at the same time I feel honored that she trusts me.

I feel so many, many, things. 

Hospice House part 3

The house is a wreck.  There are piles of stuff everywhere.  The taxes haven't been done.  The car needs to go in.  I haven't been to work in a week.  My husband (aka my right hand man) had a pacemaker put in last Thursday, so I haven't had my usual help.  He's feeling better now, but I am afraid I have gone back into "do it all myself" mode.  I can't sleep well, I never relax and I feel like I am going bonkers.  I can't hold my liquor these days, because I am just to tired.  I can't meditate or do my yoga- I'm too anxious about time.


Thank God for my garden.  It's right outside the house and it's brimming with produce right now.  I have to thin the parsley every day.  I picked peas this morning too, having to get right down in the plants to find each plumped up pod.  I spend much of my days washing lettuce, cooking greens and shelling peas in the kitchen next to my mom's room.  The produce in my garden, like my time, is precious and must not go to waste.  Plus, since spring has arrived there is planting to do.  I wondered today if my mom will live to see the next batch of peas:  the ones she helped me plant just a few weeks before she broke her hip.

Notes from a hospice house: 2

It's very quiet here today.  No nurses or home health people come by on Fridays.  Mom is napping and my husband, Furly is out.  I have a baby monitor set up in her room, but only the sound of the oxygen machine is coming through: every few seconds it makes a sound like a short, exasperated sigh, and over time this sound has become weirdly soothing to me.  Even her dog is sleeping, which tells me for sure she is sound asleep.

I'm glad she's asleep.  She has had a rough day.  She is really having a hard time coming to terms.  No one could possible blame her.  She can't get out of bed.  She can't even sit up by herself.  The worst part of this limitation is she can't take herself to the bathroom or even change her own soiled briefs.  This obviously brings up some awkward feelings, as her mind is as nearly as sharp as ever.  In addition, the pain of her hip makes her reluctant to "go."  The nurses are getting concerned.

They tried to put her on her side yesterday.  It did not go well: even though they used all kinds of cushions for support, by the time they were out the door for 10 minutes, Mom said she was too scared to be alone because of the pain.  I had to put her back on her back.  Later on, her massage therapist came for the first time.  She gave Mom a special foot rub that was supposed to help her go too, and taught it to me.  She's had prunes and prune juice and a daily laxative- long story short we've tried everything. 

There's a long list of humiliating things about getting older and needing care.  I think we can safely put having to talk about your bowels all the time to that list.

Notes from a hospice house: (part 1)

My mom lives with my husband and me.  Two weeks ago she became bedridden and was put on hospice care.  It has been a confusing and emotional time for all of us.  For the sake of my sanity and to somehow make sense of all the thoughts in my head, I am going to try and write about my experience as a caretaker and all the thoughts and feelings that come into play.  My main goal is to be honest and open about what our day to day life is like.  Needing to share these daily moments feels a little selfish, but I hope in the process to honor my mom and all of the people who support her; our family, friends and hospice care team.




Now for some preliminary information.


   How We got Here/ The Catch 22:
     1.  Mom was having treatment for cancer.
     2.  Treatment made her weak and she fell and broke her hip.
     3.  Her health is too bad to have the surgery to fix her hip.
     4.  Without surgery, she can't be transferred to continue treatment.
     5.  Without treatment, the cancer is terminal.
     6.  Now she's in hospice care.


All I have left to say today is that I am really sad.  Mom mom's situation totally sucks, and it breaks my heart.   I have been doing pretty well until today.  For some reason I just can't stop crying, so I decided to write.  My mind is full of "what if's" and "if only," and I absolutely know there is no good in it.  Writing helps me to process all the noise in my head, and I do seem to be feeling better.


I love my mom, and I know this time is a gift.