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Wednesday, July 17, 2013

Discharge Blues

It's been seven weeks since the phone rang with the news that G'ma had fallen and couldn't get up. The story just continues to make waves in our lives.  Usually, they are gentle swells.  Yesterday, I was in the middle of a tsunami.

The original home health care company discharged her.  They didn't tell me.  They just did it.  Apparently, when there are no skilled nursing needs, they cancel the connection.  The fact that her physical therapy was still an issue to be addressed didn't register on their radar.  She was done.  That was the reason the PT never returned to the pod-castle.  She wasn't on the list.

I didn't bother arguing with them.  If they don't want the case (and the dollars that come with it) they don't need it.  Her primary care physician (PCP.... because he reappears in this saga and I don't want to type it all out over and over again) was happy to send a referral to another agency.  They were happy to send a PT to see my mom.

Of course, no one told me.  I didn't know that the appointment had been made.  I didn't know that it had been kept.  I didn't know that she'd been up and walking.  Why should anyone tell me?  I'm only the Reliable Informant, the Primary Contact Person, the one who comes to visit and pays the bills and brings the supplies. Why should I know?  That must have been their reasoning; I can't figure it out otherwise.

The new PT showed up on Friday and got her up and walking.  She made it down the hallway, and then complained of pain... "Just a little."  For G'ma, that's tantamount to screaming in agony and writhing on the floor. Although much of her old self is lost, she's still able to cover her aches and ouches.  She doesn't want to disturb the status quo. She's not looking to attract attention to herself.  She wants to be fine, so she tells herself that she's fine, and she answers inquiries the same way.  That she was wincing and saying that she hurt was a clear signal that something was wrong.  The caregivers sat her down on the seat of her walker and wheeled her the rest of the way to the dining room.

Visiting over the weekend, I had found a bright red folder that the new home care agency had left behind. Inside, there were documents to be signed and care plans to be followed and reminders that throw rugs are dangerous.  There was also a calendar; 2:30 pm on July 15th had been penciled in.  I was there for the appointment.

Jane, the third PT, began by asking the basic demographics.  G'ma was, as always, pleasantly confused. She gave her birth date and her social security number and that was about it.  "When did you fall?"  led to "I fell?" and "How do you feel" led to "With my fingers."  I stepped in and provided the answers I could, right up to the question that stopped me in my tracks.  When had she seen the surgeon for her follow-up visit?

Never.  I didn't know that she was supposed to see him.  The paperwork which accompanied her home from the hospital mentioned only her blood work and recommended follow-up by her PCP.  I did that.  We are working on getting the numbers back where they were.  The nurse practitioner has been out to see her, has been monitoring her progress, has been checking her levels and titrating her dosage.  I figured that she was also noticing mom's healing leg, too.  I know that she'd admired the scar, and had palpated the area (for what, I don't know, but I saw her doing it), and had pronounced that healing was proceeding well.  No one mentioned that G'ma needed to see the surgeon. So, the answer was: "She hasn't."

Jane gave me a funny look, and called the surgeon's office.  Yes, they had a record of the call I'd placed in early June, just after discharge from the hospital.  They had called me back... they had a record of it.... and of the fact that the phone was busy. That was all that was on the chart.

Hmmmm..... cell phones don't ring busy... at least mine doesn't.... it goes straight to voice mail... of which there was none.  They never tried to call me again, even if the busy story were true.  Steam began pouring out of my ears.

Could I manage to get my mother to the office.  Answer quickly.... the receptionist needed to know NOW, Jane said.  I nodded, and wondered why this would be an issue.  There are ambulette's available if I can't get her into my car.  The implication that I had abandoned my mother, that I was uninterested in her follow-up care, that I could not be trusted, was coming across loud and clear through the phone line.  The creases in Jane's forehead grew deeper the longer she spoke to the scheduler.

Did G'ma really need to see the surgeon, I wondered?  Couldn't he send a portable x-ray to take the picture he needed? That machine had saved many a trip to the PCP's office; certainly this situation warranted the same consideration. The scheduler would ask and call me back.

This morning came and went; no phone calls were received.  I called them myself and was told that G'ma had an appointment scheduled for 11 am on Wednesday.  I guess it's a good thing I called to check.  We would never have known had I not done so.

Meanwhile, G'ma is back in the wheelchair, and loving it.  "Do you mind being pushed to dinner?" I asked. "Mind??? It's fun!" was her reply.

I try not to think about the mantra her PCP drilled into our heads : Those older patients who exercise and move about on a regular basis do better than those who don't.  Use it or lose it.  You must stay active.

I try not to think about the nonsense statements she's spewing more often than not.  This is a new development, one that presages more losses, I am sure.  Without her walks to the dining room and the tv room and the other pods in the castle, she's dwindling.  She never gets her blood going, never changes her point of view, never gets tired. Without the ability to stand on her own two feet, I worry that the rest of her will follow the path of least resistance.  Am I likely to find a puddle of G'ma melted into her recliner?  Who knows. More and more of her life is disappearing, and I am powerless to stop it.

I can take care of her.... or at least, I thought I could take care of her... I'd like to take care of her... if only the agencies would allow it. I should have had better discharge instructions from the hospital.  I should have had better follow up from the surgeon.  The home care agency should have kept me in the loop.  That's all true, and that's what I am telling myself is the cause of my angst today.

The real reason - the fall and decline of G'ma - is just too much for me right now.

10 comments:

  1. The fact that these offices did not communicate with you is nor your fault. They were the ones that dropped the ball. You didn't. Don't be too hard on yourself. You are doing the best that you can. You are not a mind reader and people should follow through if they don't get hold of you--especially if it's for an appointment.

    I do agree with the dr to use it or lose it. Even at my age, my dr tells me that. And when my elbow was broken, the PT told me the only way it would get better is if I used it and did the exercises. I had never been to PT before, but I'm glad I did. It helped me immensely.

    I'm sorry you are having to go through all of this. It isn't fair that others are not doing their job. Really irks me. It happens a lot and I've gotten your phone was busy line too. My phone goes to voice mail if I'm on it. AND I have a record of the call when it comes through.

    You are doing a fab job caring for G'ma. If only all of us could be as great a care taker as you are. I admire how much you do for your mom. It's such a loving tribute to her.

    Sending hugs,


    Megan xxx

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    1. I knew that you would be here, Megan, offering love and support.
      Thanks... a lot <3
      a/b

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  2. How frustrating that professionals don't communicate better...or their staff at least. You might ask them to list your name & number and "Please inform granddaughter"...in big marker pen on several pages, and always the top of her chart (oh I just realized it's all probably on computer now)...keep demanding to be in the loop. If you're a little pesky, at least they will know you're involved. And just saying, I'm an advocate for my grandmother will allow it! (I think.)

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    1. You are so right. My tale is what happens when you do all that and STILL have the blues. My mom (she's "G'ma" here) has a sign taped to her table whenever she's in the hospital. MOM:DO NOT SIGN ANYTHING UNLESS SUZI IS HERE and still they give her forms........
      a/b

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  3. Wow, they're really blowing it at the pod castle! I'm sorry you're going through it. May I tell you though that one of your previous posts educated me - I was able to successfully request that my bedrails be UP instead of down. I guess I'm young enough that the state of Arizona allowed me to be the exception. As I started asking people about why my rails were down, I remembered your post so I knew to ask the doctor to get that changed.

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    1. So happy... and grinning... that The Burrow could keep you safe!
      a/b

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  4. This is a tough one as it will make it hard for you to trust them in the future. It's hard to believe and yet having seen some of my experiences with our clinic and not about elderly parents but ourselves, some is a product of our times and irresponsibility in the medical profession. It has to be very frustrating and I hope you can get through to them the consequences of their neglect. It's not your fault as you are not omniscient regarding what should be done. You need solid information. I hope it's looking better now

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    1. It is better now - see Friday's post for details - but, as usual, you've gone to the nub of the issue, Rain. Trust... how can I sleep at night... information is crucial.
      a/b

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  5. Please do not beat yourself over this! It is absolutely not your fault. I am shocked that the hospital did not make an appointment ahead of time for G'ma to see the surgeon. You are a great daughter to your mom and you are doing a fantastic job!

    Maggie from Georgia

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    1. Me, too, Maggie! Me, too. It would have been such a simple thing to accomplish and would solve so many problems all at once. Watch Friday's post for the link back to your brilliant idea.
      a/b

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