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.