Tuesday, November 26, 2013

Deciding on Hospice

There's so little left of what used to be my mother.  She's toothless and listless.  She's not eating because she's not hungry.  Even chocolate can't entice her to put sustenance into her body; the same large bag of Hershey's Kisses has been in the bowl at the side of her chair for two months now.  When G'ma's not eating chocolate, you know there is something amiss.

She's still sparkly when I walk in the door, but there's no gleam of recognition beyond responding in kind to the smile in my eyes.  She knows she's supposed to be glad that I am there; she just doesn't remember why.  I remember when that kind of forgetfulness made me very sad. Now, it's just part of the gestalt.

She weighs less than I do, which is wrong on so very many levels.  Losing twenty pounds since May has left her without any padding. Her pants fall down unless her underwear is bunched up, preventing gravity from undressing her in public.  She's always cold, without fat to keep her warm. Add together her lack of energy, her thin skin, and the lack of adipose tissue and you are looking at a recipe for pressure sores.

She has no oomph at all.  Standing up from her recliner is a major effort.  Once she's up, she's too pooped to pop, too tired to move her legs to walk, too achy to exert the effort needed to get to the dining room. The staff has been wheeling her to her seat for the past week or two; there's just not enough time to spend assisting her with the walker.

Once she's at the table, she stares at the pureed food before her and falls asleep.  The ladies who sit with her are understanding and supportive.  There is no judgment, just an acceptance of the fact that she is fading away.

Pain medication is available to her upon request.  The problem is that she forgets to ask for it. G'ma's never been a complainer. When she winces as she's being dressed and aide will request Tramadol or Vicodin; aspirin and Advil have long since lost their effectiveness.  The heavier drugs leave her even more lethargic and non-responsive, though.  It's a difficult ledge on which to balance.

The med tech at the pod castle called a hospice care provider and signed my mother up for services. The fact that she was not entitled to make that decision or that phone call did not impede her.  I received a call from a nurse who was just about to go in and see your mom. She saw G'ma, I canceled the agency with a phone call.

Instead, I called Casa de la Luz, a hospice provider whose first order of business was to assess my emotional situation, then set up an appointment.  The intake nurse met us at the pod castle on Saturday morning.  She brought paperwork and information and a packet of papers and booklets to be read at my leisure.  That was quite different from the med tech's preferred agency, which left only the permission to treat sheet in G'ma's room. Does the med tech get a kick back from the agency?  One wonders.

If you are taking notes, this is the first lesson I learned: shop around and choose a place that warms your heart. Convenience for the care givers is secondary to your own well being.  I felt bullied into following the med tech's orders.  It took TBG quite some time to talk me down off the ledge and aim me in the right direction. Clear thinking is among the first things to disappear as the end nears.

The treating nurse met us this morning at the pod castle. She had no paperwork for me, just a warm smile and a gentle manner with my mom. She saw the lumps which are disturbing but will remain untreated. She measured the circumference of G'ma's upper arm and pronounced her skin and bones. It still makes G'ma laugh to imagine that she weighs less than I do so that is where we took the conversation. There is little left to waste away. She is a structure over an emptying shell.

There will be a hospice provided high-low-raise-the-head-special-mattress-equipped bed arriving this afternoon and, once again, I'll be asking the Fire Chief to move the regular bed out of her room and into.... where?  No charity wants a used mattress; I've called and been refused so many times that I'm giving up. Perhaps one of the caregivers would like it; they are not allowed to ask for items but may accept them if they are offered.  These are the details that distract me from the fact that my mother is transitioning.

That's the current terminology - transitioning.  It's a lovely word, reminiscent of the nesting I did before Big Cuter was born. I was moving from one part of life to another. It was happening without much effort on my part, just as it is for my mom. I washed and folded and straightened and decorated and waited.  She sits and yawns and sleeps and smiles and waits.

What goes around comes around and I am not enjoying this carousel ride at all. I'm well supported and not surprised and I know there is nothing I can do except keep her happy and pain-free and unafraid. Hospice offered a chaplaincy visit, but G'ma's response was classic.  For one brief moment, my mother was back.  With a raised eyebrow and a tilt of her head, she responded to "Do you want a Rabbi to come and visit with you?" simply and totally G'ma: "No. What the hell for?"

If she can smile, so can I.  I am so going to school on being a very old person by watching my mom dwindle.  As always, she's showing me the way.

10 comments:

  1. AB...Reading this has left me a mess of fears, tears and then a nod, a chuckle & knowing half-smile. I've written you before explaining how your experiencing is foreshadowing my own experience here in Michigan with my Mother & Father. Dad is much close to what you've described but I've noticed that Mum seems to be making a real effort lately to catch up to him.

    I cannot express how grateful I am for your continued openness and honesty as you live through and report on The TRANSITIONING. Ach, how I loathe the "terminology of the moment" turning a real life heartbreak into a soothing sounding walk in the freaking park somewhere."Oh my, I think I shall transition from this park bench to the gazebo by the Lilly Pond...Oh yes, how lovely"

    It really isn't quite like that is it now?!

    Anyway, thanks a bunch once more for sharing this difficult journey with us...I certainly appreciate it.

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    1. Glad to hear from you thormoo....I think of you as I write these, hopeful that some of my experiences can be of use in other lives. So glad to hear that this is more than whining in public :)

      I like transitioning more than fading but not as much as I'd like "feeling just fine today, thank you for asking!" As Mick says, though, 'You can't always get what you want"

      Carry on, my friend, and know that we in the blogosphere are here and we have your back, through the ether.
      a/b

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  2. Hospice is the most wonderful invention. I have used Hospice of the Valley for all my relatives, my only regret has been, not calling them sooner. Hospice helped in so many ways, but the emotional support for the family members remaining behind, was by far the best. I have even attended one of their support groups, Daughters without Mothers. It was extremly helpful when I was depressed after the loss of my mother and mother in law. I am so glad you stood up for your mom and called the Hospice you wanted. You will NEVER regret contacting them.

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    1. It is, as you say, Ellyn, more for me than for G'ma. She just feels the love, without considering the source. I will be availing myself of their counseling services for sure.
      a/b

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  3. I am sending hugs. This was inevitable but it's hard. I have heard nothing but wonderful things about Casa de la Luz. So glad you are letting them help you both. xoxoxo

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  4. It's tough to make such decisions. When my husband's mother left her assisted living facility, we offered the ones who had helped her to take anything they wanted. We then gave the rest to Good Will. On mattresses my suggestion would be Craigslist which gives a place to contact with those who need something and those who have it. We use it regularly for our sales of livestock and just got a 6 month old kitten after we lost our beloved 4 year old. It's free and costs you nothing if you don't get someone interested.

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    1. An aide in the pod castle took the bed... or will take it as soon as he figures out that neither a station wagon nor a mini-van will fit the mattress, box spring and frame. Third time's the charm, I hope!

      Craigslist is where the rest of the stuff will go, when it's time.
      a/b

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So.... what did you think? I'm interested.....

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