Archive for December, 2014

Dollies

December 27, 2014

I was visiting my mother and recounting to her how Jordan and I had been moving boxes of files from her apartment to my house, and I mentioned that Jordan had borrowed a dolly from the super of the apartment complex to help with that.  Since my mother doesn’t hear well, especially unexpected words, I asked if she knew what I had said, and she replied, “Oh yes, a dolly, just like my Patsy Ann doll.”

(The stories about her childhood Patsy Ann doll are legion, including a quite memorable and climactic one about its demise at the hands of her younger cousin, so she knew I would know what she meant.)

And then she started laughing really hard, and I laughed, too.

Service

December 23, 2014

I liked reading in today’s Daily Meditation from Richard Rohr about how spirituality involves freely given service.

When such freely given service is confused with coerced service, even if the coerced service is coerced from one capable and willing to give (other) service freely, we end up, I think, with trouble.  Or at least in the realm of the taffy-pull of more mundane human social relation dynamics.

Bus cards

December 21, 2014

I gripe about technology, I admit it.  Here’s a recent occurrence.

I got on the bus yesterday, first time in a long time, and one of the automated messages during the ride was that some of the “Charlie Card” fare cards are expiring and we should go to a T station with fare machines (none are in my town) to see if ours is such a one.

They may have said it was due to a software upgrade, but I am not sure.

We checked online when I got home and found further information about what to do if we end up with inaccessible stored value on a fare card — go to Downtown Crossing (in Boston) to get that addressed.

I would have preferred one fare for all, paid in cash, all along, to having to do this, especially since it comes at an especially inopportune time for me.  I assume it is something of a monkey wrench for some portion of other passengers, too.  If we don’t take the steps outlined, and our card is one of those expiring (which I am thinking is likely mine is, because it’s pretty old, but let me add, I had no idea that if the card were to expire, there wouldn’t be an easy transition), not only will I lose my money on it, but I will pay higher fares going forward if I don’t obtain a new card.

My gripe is that the system is sold to us on the basis of convenience and pricing, but we actually pay up later, with either greater inconvenience, or worse pricing.

Reminds me of the behavior of private telecommunications service provider companies — they make an arrangement with the customer, induce some amount of reliance, and then unilaterally change the arrangements to the customer’s detriment.  The pattern teaches mistrust, it seems to me.

When I first got on the bus, I was thinking about whether I should put more money on my card.  Interesting that I may well end up paying the pay-as-I-go higher, cash fare instead.

What it takes away from me is the sense that I had in my wallet a card I could rely on in a pinch to get me a ride on the bus, that I had made adequate preparations.  That was a false sense of security, it turns out, perhaps because I didn’t pay enough attention to the details of the card arrangements, I don’t know.  I am sure there is a lesson in it.  It certainly echoes other patterns for me, involving my being taken in by what turns out to be salesmanship.  I wonder if technological innovation lends itself to that pattern.

Nighttime rabbit

December 18, 2014

So I am taking tea leaves and eggshells to the compost heap, and there’s some movement in the backyard and it’s got a cottontail and yes, it’s a rabbit.  At nine in the evening in mid December?  Guess so.  It’s not the first time I’ve seen a rabbit in my yard after dark this (late) autumn.  Maybe it’s the mild weather.  I don’t know, I don’t usually see them after the early fall.

The perils of medical thinking

December 17, 2014

The other day the rehab staff put my mother through too much exercise, despite her protests, and they ended up wanting to rush her back to the hospital.  She said no.  The problem caused eventually resolved on its own.

Yesterday my son’s primary care physician came down on him hard and in a heavy-handed way about a condition my son is actually currently motivated to do something about (I know this from having heard him discuss a possible way to deal with it with another physician).  Whether what the PCP said will undermine my son’s previous, constructive attitude I am not yet sure, but it sure didn’t help.

In both cases the medical people were not dealing with the particulars of the patient before them, they were following a script.  That may be the way medicine is practiced for some reason, but from my point of view, it doesn’t make a lot of sense and causes harm.  Not quite what one would think “First do no harm” intends.

A view with birds in the trees

December 15, 2014

My mother really enjoyed her backyard at her home in New Jersey.  It had a patch of woods behind it and she had a lot of birds in her yard.  She enjoyed that, watching them out the large picture windows in the living room and dining room, and out of the smaller windows in the kitchen.

While there is a large tree in view of her apartment windows up here in Massachusetts, it certainly is not nearly as rich a view for birdwatching.  But her window and view from her room in the nursing and rehabilitation center are more like what she had in NJ.  The woods are deeper and slightly further from her window, but there are birds all the time.  I even saw a hawk yesterday.  I think it’s conservation land.  The occupational therapist told me today about a pond nearby that is nice to walk around.

So when the doctor started talking today about whether my mother will eventually want hospice care there, I thought, “Well, it would give her a nice view.”  We’ll have to see when the time comes.

Taken in

December 15, 2014

Years ago I had a huge personal loss, and someone I was friends with at the time was very unsympathetic:  “You have a husband,” she said, “So you can’t have anything to complain about.”  At the time she was single.  She said it to end a conversation.  And I truly hadn’t thought about my need to talk about the loss in terms of complaining, I thought I was trying to get my mind around the loss, and my need to “tell the story” extended beyond discussing it with my spouse.  I learned later that when a baby dies, many people are apt to say something memorably unhelpful to you, and you just “make a list.”

We ran into each other recently, and I mentioned in the course of explaining something else, in response to a question of hers, that my husband had died.  That stopped that conversation.  I am pretty sure she is currently married.

I used to take people more literally.  I used to think that this person would be sympathetic now that I am not married, but no, I suppose it’s just that the person does not offer sympathy for losses due to death.  That’s about them, not about the details of the situation.

 

When the bureaucratic tail tries to wag the medical dog

December 12, 2014

A bed could not be found for my mother at the case manager’s first choice for a nursing/rehabilitation facility, this Friday afternoon, and she suggested maybe they should just send my mother home instead and have her hire some services.

I did not take to this idea well.

Long story short, my mother will be discharged tomorrow to a bed at a different facility.

I knew from many perspectives that the attempt to change the discharge plan from rehab to home made no sense.  The medical team hadn’t changed their conclusion that my mother needs to regain her strength and mobility and such before she goes home.  The kind of services a patient can hire, especially on short notice, would not provide the type of care and therapies for improvement needed at this point.  On a weekend, there is even less access to supervisory help, and often the people who work weekends are new hires, so it would be even less likely the work offered by the in-home services would be adequate.  The out-patient specialist had told us that the rehab center would be familiar in their own right with the symptoms that need management, even without her instructions and prescriptions — in other words, the specialist was relying on my mother’s being discharged to a rehab center.

In addition, I did not take well to the idea that I would be the person on the spot to take up the slack, should the hired services be as inadequate to the situation as I expected them to be based on my prior experience with other ill family members.

I also made the point that without adequate discharge plans, my mother would ricochet back into the hospital.

As I said, the case manager abandoned her home discharge idea and found a bed at another rehab center.  All’s well that end’s well, but I was appalled at the process.  Having been around this block before, I knew enough to object and to be able to object effectively, but I was not a happy camper.  The hospitalist I spoke to later assured me my mother would never have been let out the hospital door with a discharge plan for home like this, that she (the in-hospital doctor) would never have approved the plan, and so newbie patient families are not put at risk of being taken in by and agreeing to this kind of case management behavior.

But it is unnecessary aggravation, in my opinion.

I can see that my challenge was to speak up and advocate on my mother’s behalf but keep an even keel.  I think I am getting better at it with all the practice I am (unfortunately) getting.

And I got nice phone calls this evening from the social worker on my mother’s team and from the hospitalist, after I got home.  They said they would provide feedback to the case manager.  That sort of resolution and such support are far better than what I’ve experienced in the past.

 

 

 

Medical procrastination

December 10, 2014

My mother’s lab tests came back and a specialist appeared in her hospital room — and told her, when she asked whether he would now be in charge of her care, no, that will have to wait for the out-patient clinicians to be brought on board.

Really.

Now the campaign begins to have enough of a treatment plan in the discharge instructions, when that time comes, to tide her over until she is actually seen by the out-patient clinicians.  We would like to avoid another re-admission to the hospital.

It would be farce if it weren’t about what it’s about.

I bought my mother an electric menorah this evening.  I don’t know what connection that has with all this (she had mentioned she wanted one for her apartment, instead of her usual candled one), except maybe it expresses hope in the midst of dystopia.

Medical systems and biology

December 8, 2014

So, apparently, the medical systems designers have decided that a patient will not have symptoms that need management by a specialist in that disease until the lab test results come back (something like a week later), despite a fairly clear tentative diagnosis.  And despite the patient developing symptoms that need management.  But no specialist can be brought in yet because the results aren’t back yet.

So my mother landed back in the hospital through the ER via an ambulance this morning, in part because it wasn’t clear whether the worsening symptoms indicated that a medical procedure she had had Friday had gone awry.  But no, it wasn’t that, it is apparently just symptoms of the underlying disease they won’t deal with until the lab results are in.

They are promising me that this time they will not discharge my mother without an adequate treatment plan to manage her symptoms.

had asked multiple times on multiple occasions over the course of the past week for such a specialist, and the in-patient medical staff even asked me today why my mother has no such specialist.  And her primary care physician had claimed she would make this process smooth, as she had experienced a rocky process with her own mother’s illness.  But today, again, she said no specialist yet.

Maybe one could say that the root of the problem is that systems designers aren’t realistic.  And that the systems are too rigid.

This re-admission to the hospital can’t be saving costs.

It has certainly cost my mother physically and emotionally.