Wednesday, October 23, 2013

The ending of days

"Gone the tears that you have wept, you'll dance in freedom ever after."

My mom is dying.

My mom is actively dying.

Mom is 90, in an advanced stage of dementia, with macular degeneration, no quality of life and no will to live.

All things considered, she looked pretty well as recently as a month ago.


Mom has been in hospice care since May, 2011. More than two years now.

On Sunday night at about 10 p.m. I got a call from a hospice worker. She was calling, according to protocol, to let me know my mom had fallen and had some cuts and bruises. Hospice made the decision to put her back on continuous care.

Mom has periodically had continuous care, usually after a fall or once when she had a viral infection. When she is in a stable state, hospice provides services, such as bathing her three times a week. A chaplain and a social worker visit her regularly. Sometimes volunteers visit her. Her case is managed by a team led by a registered nurse.

The hospice worker assured me that this wasn't an emergency, so I went to bed.

About 1 a.m. the phone rang. My mom was complaining of pain in her leg. In a sleepy state, I gave permission for her to be taken to a hospital emergency room for an X-ray.

At about 3 a.m. the phone rang again.

Mom had a fractured hip. Either she'd fallen and fractured it or the bone had broken causing her to fall.

I wrongly thought that a fracture was milder than a break. Something like a fissure or a crack that would mend on its own in time.

The hospice worker said the treatment options were surgery or pain management. I couldn't imagine my mom, in her mentally diminished and frail state, undergoing surgery. Pain management was clearly the way to go.

I also asked that she not be admitted to the hospital. I asked for her to go back to her assisted living residence.

In April 2011 mom was taken to the hospital after a fall, admitted and kept there for a week. She came out in a much weakened state, from which she never fully recovered. A month later, she was still in a decline. My brother and I were united and adamant about not wanting her to go back into the hospital. That is when she was admitted into the hospice care program.

We have been in agreement since that time. We do not want her going back into the hospital.

So in the wee hours on Monday morning, mom went home to her room at the assisted living residence. Hospice put her on 24-hour crisis care, and started her on hydrocodone.

In the morning I did some research on hip fractures and it was all bad. The surgery is a difficult one, especially so for the elderly, with a long and painful recovery and rehabilitation period. My mom would not want to go through that. My brother and I would not want her to go through that.

On Tuesday my mom still had significant discomfort and her hospice team lead recommended stepping up the pain management and starting Mom on morphine.

Now we wait. There is no mortality benchmark, no one size fits all time frame for a hospice patient on morphine to live or die. Some patients receive palliative morphine for weeks, even months. Some pass away within hours.

Mom is conscious but unresponsive. She is being offered food and water but we are not forcing her to take any. The kindest ending I can imagine would be for her to simply drift off into sweet everlasting sleep.

Not knowing when it will happen is the hardest part right now. That and being so far away.

I've been told that hearing is the last sense to go, and that if I talk to my mom she'd hear me and know I was there, even if she couldn't acknowledge it or respond. The wild card here is her dementia. The last time I saw her, she had no idea who I was. So there's no particular reason to think that my presence or my voice would give her any comfort.

Then again, maybe it would be better to err on the safe side. I'm thinking about it constantly, almost obsessively. The next few days will be pivotal. I think if she doesn't die right away, she may live a little while longer. If she makes it to the weekend, then maybe I will try to go see her again next week.

In so many ways I just want this to be over. I really lost both my parents when my dad died, three years ago this coming November. I just haven't been able to mourn for them yet. As soon as we buried my dad, my mom spiraled into this terrible, demanding, long, slow tailspin of ever-increasing cognitive impairment, ever-declining physical ability, and most recently, an unrelenting desire to die. "Give me a pill," she'd say, often, to anyone and everyone. "Help me to pass."

Her life had lost all purpose. She wasn't living, she was existing, that is all.

I'm already talking about her in the past tense.

Her heart still beats, her lungs still expand and contract, her body is still alive, but my mom is long gone.

She is a Holocaust survivor and an atheist. I have no real personal faith, but I'm asking the powers in the universe anyway.

Soon, soon, please, please, let her body rest.

This is Mom and me last spring. She still knew me then.



"You've been taken by the wind, you have known the kiss of sorrow
Doors that would not let you in, outcast and a stranger

You have come by way of sorrow, you have come by way of tears
But you'll reach the destiny, meant to find you all these years
Meant to find you all these years

You have drunk a bitter wine, with none to be your comfort
You who once were left behind, will be welcome at love's table

You have come by way of sorrow, you have taken a long way home
But the love that waits for you, you will someday come to know
You will one day come to know.

All the nights that joy has slept, will awake to days of laughter
Gone the tears that you have wept, you'll dance in freedom ever after

You have come by way of sorrow, you've come over a stony ground
But when love calls out your name, you will lay you burden down
You will lay you burden down."

Julie Miller

1 comment:

Cathie said...

Dear Liz, I wish you to be as brave as you can be. All of it is such a heartache, and I understand (and feel) every word you write. You know I loved your mom dearly, and I also feel I lost her three years ago when you dad went... My thoughts and love are with you now. May she go peacefully.

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Thanks for your comment! I will post it as soon as I receive it. Liz