Archive for the 'medical care' Category

Need (not) to know

January 29, 2015

We got a lot of snow from the storm a couple of days ago.

The day of the storm, around midday, I shoveled the front steps and path, and when I got to the sidewalk, the snow was, I think, higher than my waist.  I shoveled a small path to the street and then went back in, to regroup.

Jordan went out next, and when I looked out a little while later to see how he was doing, I saw other people clearing our snow too.  Some I did not even recognize.  One had a snow blower and did much of the driveway.  Then the plow came and refilled our apertures.  Jordan and I worked on that and widened the opening at the mouth of the driveway, which is more necessary than people might realize, due to the misalignment of the garage with the driveway.

I got a call during this stint, during the late afternoon, from a nurse at the nursing center where my mother was, and she made me think she thought I needed to come.  I didn’t really think I could come.  On Monday, prior to the storm, I had spoken to my mother, during my visit, about the coming storm,  and I tried to say what I wanted to say to her and to let her know that whatever she needed to do was okay with me.  She was already in an unresponsive state.  The hospice social worker had discussed with me how I shouldn’t feel I needed to be present at my mother’s passing.  And, of course, there was the travel ban til midnight.

I set out in my car the next morning (Wednesday morning), took a different route to the nursing center, favoring major roads, like Mass. Ave., even though the route was longer.  I fishtailed significantly once, in Belmont, on Pleasant Street.

But I got there, to the nursing center, there was even a parking space I could pull into, and I did.  And I went in to see my mother and she had indeed declined further.  And I sat with her, read her a poem, sang to her a couple of songs she used to sing to me when I was sick as a child.  The aide who brought her the breakfast she could not eat brought me a cup of tea.  I read the newspapers I had brought and I prayed and meditated — or, the way I tend to think of it, I plugged in more actively.  The nursing center nurse came in with some liquid meds for my mom.

I mentioned to the nurse that I wished the hospice folks were available, to help me put into context what I was seeing with my mom.  When I had called them the night before, all they could say was that she was stable — no change, from their point of view.

The nursing center nurse came back to check my mother’s oxygen level.  She was already getting oxygen support.  My mother’s fingers were too cold for the machine to get a reading.

So I am thinking “Where is hospice?  Why am I doing this alone?” and then I turn that into, “I, apparently, am hospice.”  So I check in with my guidance to find out how I can help and I do, including letting my mother know that my spirit will stay with hers until there is a hand-off to what comes next, that I will be, as the line in TV dramas has it (she and I used to remark over this line), “with her every step of the way.”  I can remain anchored in the material world and connect to my spirit, and my spirit can be with hers, even after hers is leaving her body.  And something happens, not instantaneously, but it happens, and at some point my mother has grown noticeably quiet and I get the nursing center nurse and she looks for a heart beat and there is none and my mother has passed.

It was peaceful.

Had I known this was in the offing, I would have had a very difficult time getting through the storm and driving over to the nursing center the next day.  But I think I have an understanding with the forces greater than myself not to let me know when my knowing would impede.  Self-consciousness, anxiety, like anger and other things, can be a drag on sliding through those seams life seems to present us with sometimes.  If I follow my guidance, instead of figuring it out myself, including looking ahead, I do much better in such situations.

The other major theme I communicated to my mother as she was, as they say, “actively dying,” was my trust in the universe that we would get adequate help for my mother to have a safe transition.  She would be okay, I would be okay, it would be okay, it was okay.  I truly and deeply felt that, and I feel that about much of this journey I accompanied my mother on — there was help.

That being said, I did feel a huge responsibility myself, about doing my part in a way that helped.  The primary part of that responsibility — making sure my mother received the care she needed — has ended.  Now there are just secondary matters, like paperwork.


Keeping the focus on what’s important

January 24, 2015

I got a phone call this afternoon from one of the hospice chaplains.  One of the nursing facility nurses had let her know I had called for an update since I wasn’t able to visit.

The chaplain said she had visited with my mother and read to her and that my mother was basically sleeping and seemed very peaceful and comfortable and relaxed.

I was grateful for the call and grateful for the content of the call, and it got me thinking further along the lines I had been thinking along, in terms of interpreting the storm and its impact on the situation:  that it is sometimes unclear, while our concerns and desires and fears (and sense of responsibility) are swirling around us, what actually would serve the greatest good for all involved.


January 16, 2015

After something like a month of “advocacy,” I finally was able to have the conversation with the specialist doctor that my mother has been wanting.  The doctor called me, and at this point, that was probably the best approach — I have relayed the information to my mother.

The conversation was supposed to occur in an office appointment, but my mother never recovered enough after her outpatient procedure to go to the appointment, even by ambulance.  It was scheduled long after her hospital release, and she has been declining in health since then.  One of the contributing factors to the scheduling was the doctor’s vacation.  When I was told that this was “reasonable,” it gave me the opening to point out that my mother’s wanting and needing the information nonetheless, despite the fact that the systems in place require her to do things she can’t, was also reasonable.

Yesterday I got a 21 minute, unhurried phone call and our questions answered.

It helps to know that a small localized disease diagnosed early on can cause systemic problems like general weakness and tiredness, it helps to know that an outpatient procedure can produce the same sort of domino effect as a fall in an elderly person  —  secondary consequences and all, and the person never returns to even close to the status quo ante, just keeps declining instead.

At least we got to fill in some of the information we have been missing as we try to understand what has been going on.


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.

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.


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.

Déjà vu

December 3, 2014

I took my mother to see a surgeon today, someone who had operated on Willy.  The doctor even seemed to remember me, although it was over eleven years ago.

A specialist to whom my mother had been referred by her primary care doctor had arranged for her the appointment with the surgeon, so it wasn’t an arrangement I had made.

There are so many parallels.  There are also a lot of what I might call “unparallels,” what feel like ironies — very similar issues coming up in very contrasting ways.  My mother notices them too.

The thing my mother and I differ strongly on is our reaction to her needing medical care in this way so shortly after she moved up here.  She thinks of it as surprising, whereas I felt for months before she moved that she needed to get out of there so I could provide this kind of help in just this kind of situation, that she was staying there “on borrowed time,” so I react to it more as playing out in clear detail something I sort of had a vague hunch about.  (And, of course, she needed to get into a home without steps, and her apartment up here provides that.)

Over a year ago I started looking into assisted living places in town, on my mother’s behalf, but my mother didn’t want to move into one.  So I found her an apartment in a complex with about 30% senior citizens.

In many ways, I feel now as if she’s in a sort of “assisted living” situation, but much of the assistance is coming from me.  Sure beats having her too far away to help.



When grass looks dead

September 19, 2014

This year I learned that while some patches in my back lawn looked similarly dead, the symptoms were being caused by different problems.

One was dryness and scorching.  It seems that the top of the lawn, near the back retaining wall, is more exposed to sun, perhaps on account of tree removal elsewhere, than it used to be.   We apparently didn’t get a lot of rain either, and there is “ledge” not far beneath the dirt, I am told, so I guess the whole thing dries out easily.

That area has come back from its dormancy with watering.

Closer to the house the patches were being caused by grubs.  I have had this problem in that area before, had it treated and replanted, but the little critters are back, and we’ve had to, again, pull up the dead stuff, take off a layer of dirt, treat with some sort of chemical product, put in new soil, and then seed.

What we were shown was that in the dry patch, the roots are still there.  In the grubby patch, the grass just pulls right away without application of real force  —  the roots are gone.

Why is this interesting to me?

It reminds me of the problem of trying to differentiate between spiritual emergency and mental illness or between dyslexia and cognitive impairment or between viral sore throats and strep — all kinds of situations in which a differential diagnosis makes a big difference in terms of choosing an effective treatment.

It also reminds me of the problem of calibration, another factor that is relevant to finding a helpful response.  Some people become calibrated for people with low pain thresholds or high drama affect, and they become callous to anything short of hysteria.  I’ve encountered doctors and nurses like that, some of whom were apologetic after they discovered their misjudgment.

On the other hand, I am leery of putting too much emphasis on diagnostic category, either.  That can turn into a proxy for getting stuck in the problem and not doing what can be done to improve things:  “Oh, it hurts to walk because I’ve had surgery, I’d better stay in bed, I’m just a post-surgical invalid.”  Or, “I’m not sure what the correct diagnosis is, so I won’t bother looking for strategies that help.”

Of course, if the patient says, even calmly, “This really hurts too much,” it might be well to see if there isn’t actually a complication that warrants a different response.

The other reason the lawn issues catch my attention is that, just as there is a New Testament metaphor about the soil on which the seed is cast, there is, I believe, an issue about on-going upkeep  of the crop  —  if the grass begins to die, we may need to be careful about finding out the cause, because that may make a difference in terms of what response will be helpful.  Watering a patch destroyed by grubs won’t help, reseeding a dry patch is an unnecessarily intrusive intervention.