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.

Making Time

In my last post, I wrote about time.  I was feeling disappointed because I was expecting a large amount of time off from work, and it didn't happen.  If you happen to read that earlier post and it sounds whiney, it probably is. 

The beautiful thing about disappointment is how you handle it in the aftermath.  I decided, so as not to let my brain explode, that would start immediately to take back my time.  Writing about it helped a lot.  As I wrote, I remembered that time is an illusion anyways.  Then I realized I could create more time in my life if I wanted too.  I don't mean by bending the perception of the universe (although that is fun to try too), but dammit- how much time do I spend watching TV again?  Jeezuz!

I had this list of stuff I wanted to do when I got my vacation, but why couldn't I make time to do a lot of that stuff now?  The next day  I started going to the gym again.  I went every day for a week until they were closed on Sunday.  Monday, Furly went into the hospital for three days.  After that he quit drinking, and therefore, I cut way back myself.  You forget how much energy and time is wasted just consuming sometimes.  I was ready for creating, not consuming.  After a week of dealing with doctors and stuff, I got right back on the horse and worked out every day again this week.

So, I have conquered the first thing (Oh and I started writing, right?)  I spend less time sitting and watching the tube than before.  I need to start tackling some of the other things on the list too.  I want to take  a yoga class.  I want to record my next album.  I want to book more shows and take care of the house and see my friends and all of that.  I can't blame not doing those things on having to go to work. 

The silver lining here is plain: If I hadn't thought so long what I could do with extra time, I would not be so motivated to make some.  If I hadn't expected a big change in my life, I wouldn't have known that I wanted one.  And so, "up from the ashes grow the roses of success"!