Archive for the 'elder 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.

Books that channel

January 18, 2015

It recently occurred to me to bring my mother one of the anthologies of poems she so loves.  She chose her replacement copy of Best Loved Poems of the American People, which I had found for her after she spoke of her regret of having de-accessioned years ago her copy from her youth.

My mother had me leave it in the top drawer of her nightstand in her room in the nursing center, and I must say that reminded me of Gideon’s Bibles in hotel rooms.

This morning, when I visited in the early morning, my mother had more energy than she’s had some recent mornings, probably because the aide had not yet come to help her with her morning routine.  So we got out the poetry book, she chose poems, and I read them.  At some points, I could feel her enjoyment — I found myself reading a closing stanza in her cadences and intonations and she was smiling, for example.

It is Sunday.  My mother is not religious, she is of the generation and culture for whom the Holocaust negatively impacted the ability to be open to belief, but poetry can be, I think, for some people an avenue to the source that inspires our spirits, to the extent possible.


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.


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.



Changing old habits

October 26, 2014

I am probably in the habit of dealing with being expected to pick up the slack in my family by doing some version of stoic and a female version of macho.

Well, today I tried something different.  My mother has substantial mobility issues, and I have been trying to figure out how to drop her off at, for example, the building she needs to go to, get her safely ensconced, and then go park the car.  Do I leave the engine running?  Do I turn it off and risk being in violation of parking where there is no parking?

I asked my mother about getting a disability placard.  She said she had never thought of it, which was no surprise to me  —  she admits she thinks of herself in terms of a much younger version of herself.  I have been trying to point out that this “Let’s pretend” makes things, makes difficult situations, even harder, including at my end.  She said she would ask her doctor about it.

That’s another thing I’ve learned:  we can only do something if an M.D. says so.  It’s how she finally decided to move out of her house and close to me.  My doctor advised me at my annual check-up that I had too many stressful things on my plate, including trying to care long distance for an elderly frail person increasingly in need of supports.  That got her attention when nothing previous had.  She had been listening before to people who seem to have been encouraging a situation that was unsafe, and without taking any responsibility for it.

We work with what we have, including the people involved.

It struck me that I find it tough to have to suggest such ameliorative measures, because if they are rejected, then what attitude do I take?  I have broken the pretense that the situation is okay, and we cannot go back to the status quo ante, including how I played my role.

I learned some years ago that people’s level of cooperation varies, that different people have different degrees of cooperativeness.  Some people drag their feet or make everything into an argument or dismiss a call to make an adjustment.  It is especially pronounced, not surprisingly, when the status quo is working for them and they are not considering whether it is working for others.

Willy was eminently cooperative, even pro-active in that direction.  I wish more people were like that.  Maybe only a spouse does that and I became miscalibrated in my expectations.  Or maybe he was exceptional and I became miscalibrated on account of that.

Catcher in the Rye

September 15, 2014

Sometimes when I find myself complaining (perhaps even whining) about my familial role, I talk about feeling like Holden Caufield’s interpretation of a Catcher in the Rye — I do often feel as though I am responsible for keeping people from falling off the edge.

So it was quite a thing for me to realize, after the urgent situation this afternoon had subsided, that I had sort of literally done that for a neighbor.

She is elderly, has dementia, and had apparently wandered across the street and up onto my porch.  I became aware of this only after my son and another neighbor were trying to get her back into her house.  I had been in my backyard doing yard work.

Long story much shorter, a police officer held the senior under the arm, while I stood behind the elderly woman and provided physical support as she made her way up the steep back stairs to her house using her hands as well as her feet.  When she got to the last step and began to stand up straight, I braced myself against the house as I stood on the steps, and I could feel the weakness in her legs as they quavered, but I gave support and she got up there, in her Boston Bruins slippers, and I gave a cheer.

I had kicked off my yard-working clogs before I ascended the stairscase;  I knew I needed as much grip as possible and the best chance at keeping my balance possible.  (I wasn’t wearing any socks.)  I have always had a terrible sense of balance, and I do have ear issues, so I suspect my balance issues have a physiological component.  I am not fond of steep staircases with shallow steps like the one we had to go up.  But no one asked me if I wanted to play my role — the other neighbor made it clear she wasn’t going to do it, and my son I think was up on the back porch already, minding the backdoor and the husband, who also suffers from dementia, waiting to receive the elderly woman.

So afterwards I was sort of amazed at what we had done, and I realized I had kept the lady from falling off the stairs — not exactly the Catcher in the Rye, but close.


April 24, 2014

I very much appreciated Richard Rohr’s reminder this morning that “Without all the inner voices of resistance and control, it is amazing how much you can get done and not get tired.”  That’s in today’s Daily Meditation.

Gita and I have talked about this, too — couldn’t do it without “letting go” and “turning it over.”

Now, I am perfectly prepared to believe that I could do this better.  I put up resistance (like a kid pushing the spinach to the side of their plate), I fret, I get ahead of myself, I try to get other people to act in a way to prevent a future problem (like trying to get them to correct, before it is filed, a tax return that has mistakes in it).

I think I see two additional issues, in addition to “letting go” and “turning it over,” but, as I said, I am prepared to discover the issue lies with me.

One is volume.

I just end up with too many things on my plate as a result of being open to and able to do caretaking.  The inflow can feel as if it exceeds my processor’s capacity.

The second is society’s (unreasonable) demands.

The two kind of intertwine.

I once heard someone say that she thought of the nursing home in which her mother lived as being like “one big alcoholic.”  She meant that the institution could be as difficult to deal with as a human alcoholic, and with similar patterns of behavior.  I’ve felt similarly about other institutions, including schools, hospitals, social services, the justice system.  Whether it’s damaging behavior by the institution to a loved one or demands from the institution on me (as a caretaker), it can feel as if what I am called upon to do exceeds the amount of energy I can give it without too much damage to myself.

It’s no secret that patients in hospitals and nursing homes who have caretakers of their own weighing in as case managers do better, get better care, etc.

So where to draw the line between detachment and involvement?

It’s not just the wisdom of knowing the difference between what we can change and what we can’t, it’s also putting a boundary on how much of ourselves we can deploy without too much depletion.  Inflow from prayer and meditation certainly helps, but I think outflow can exceed inflow if care is not taken.  On the other hand, there is an instinct or desire to try to prevent or ameliorate suffering of others.  Part of that is wrapped up in trying to avoid pain — something we are encouraged to do by our norms and our survival instinct.  I think there is also a part of helping others in some situations that is from pressure from social norms more directly, regardless of where we think we should be drawing lines and regardless of inner guidance about where to observe boundaries, of what’s ours to do and what’s not.

My sense is that we have with our current social organization shifted around responsibility like a hot potato or like a shell in a game in which something is being hidden beneath one of a number of inverted cups.  Some techniques we seem to me to use to do this include, for example, narrowly defining our piece of the project and expecting others to do more;  littering, on the justification that one little piece won’t hurt;  setting systems up in such a way that requires a person without authority or control to have responsibility.

I don’t know if human free will can “clog up the plumbing” of the system of human interaction and society, or whether it’s the case that any system we devise can work, so long as those who have to use it interface adequately with divine help.  But I admit that sometimes I think we have developed a system that doesn’t work, especially for the long run.

For me, the questions are relevant to the issue of how much better a situation can be expected to go — because I am often hearing from others that things could be better if I just _______.  I have run through a fair number of _______, and I am here to say they do not necessarily work as advertized.  Maybe this is why 12-step programs refrain from advice and why the most general helpful source I found after Willy died was actually Al-Anon, the program for family and friends of alcoholics, although Willy was not a qualifier of mine.

At any rate, I conclude for now that working on my part of the equation, so long as I do it gently, can’t hurt, but that I should also be wary of assuming that optimizing my own part will result in things going better in other ways.

Shutting down

January 26, 2013

I’m a little familiar with how a person approaching death may stop eating and drinking as the body goes through a process of shutting down.  My dad is going through that now, and home hospice nursing is supposed to begin for him this weekend, now that he’s agreed to it.

For him I saw the shutting down process begin earlier.  I had sent him a couple of books for his (88th) birthday, including one about Senator Mitch McConnell.  (He’s a fan, he thinks the senator is smart and clever and he agrees with at least some of his positions.)  He didn’t have time to read it between hospitalizations.  I had thought I was saving him a trip to his local library, because he’s been a regular there to check out books, but he had too many things to do to read the book.  And by the time I got there last week and he came home again from the hospital, he wasn’t up to it.

But he did read the newspapers on Saturday and Sunday.  By Monday or Tuesday he wasn’t even able to do that, and I knew he was reaching a point of fairly rapid decline.

He didn’t want me to leave and I wished I had some other way of handling all my responsibilities.  I had lobbied my parents to move closer after Willy’s death, but we were no competition for the New York Metropolitan Opera.

To be fair, I think my father gets out of opera performances what others get out of religious services.  So he would have been leaving his source of sustenance.

But I couldn’t, and can’t, pick up that slack, eliminate that 210 mile distance.

I’ll go back soon, I don’t know whether he will still be alive.  He wanted to know when I’d be back and I told him I wasn’t sure, that I would play it by ear.

For now I’m trying to listen, and to do what I need to do here before I can leave again.

In some ways I found listening while I was down there easier.  Things fell into place more easily than they had any right to.  Except for the day we spent obtaining a pain medication prescription for my dad.  But another day I knew somehow to bring with me the papers that needed a notarized signature when I took my mom to register with a pharmacy that makes home deliveries, even though it was the Martin Luther King, Jr. holiday and so many places (like banks) were closed.  And there on the pharmacy door it said “notary public.”  Stuff like that.

So now I’m here, he’s shutting down there.

Right before I left, I asked him if I could kiss him on the head, and he said, “No,”  with his usual dismissiveness.  So I stroked his nose, which was something I did as a child when I sat in his lap.  (He had thought it was because I thought he had a big nose, but it wasn’t — I just liked his nose.)  So he put up with the intimacy of my stroking his nose this time, too — I think he knew there was an element of teasing but also love in the gesture.

I ended up sleeping on the floor the last night I was there.  (The live-in help I had helped arrange for was in the guest room I had been using previously.)  It felt like what I call “old karma.”  I just play it out, like reading a music score and singing it at sight.  This not being there now feels like old karma, too.  At least there’s nursing and household help at this point.

For me there is clearly a challenge in figuring out what to do, what I can do, what I can’t do even though I would like to.  It’s a lesson to learn that I can’t always mitigate the consequences of other people’s decisions.




March 3, 2012

In addition to introducing me to the work of Robert Graves, my high school Latin teacher introduced me to the discipline and approach(es) of anthropology (I think he was getting a master’s degree in it at the time).

I used to try to apply anthropological analysis to classical and medieval law and history.  I liked it the way it allowed me to make sense of things that hadn’t looked sensible before — like finding that there were patterns in succession to the Visigothic throne, that “morbus gothorum” did not do justice to what was going on (it was part of, and the impetus for, my original dissertation topic, which I chickened out of, in favor of one that had originality built into it but for which I didn’t have much enthusiasm — that one had to do with 14th-century dower in England, and I wrote a paper on Livy’s telling of the story of Lucretia and the validity of coerced consent in Roman law, instead).

I was thinking this morning about the Republican race for president, about conservative thinking on moral decay and strengthening the family, and about the factor of religion in the primaries.  One of the things that passed through my mind was how Mormonism, I think, sees itself as trying to make good on Christianity’s promise, and how its sometime embrace of polygamy might fit into whatever project of reform it is engaged in.  From another angle, I was thinking about kinship groups other than the nuclear family and the roles they sometimes play in social and economic networks.

So, what came out of this mixture of thoughts was the idea that maybe our insistence in our current culture of relying on a nuclear family is a point at which we might intervene when we try to identify what’s not working in our society and how to address those ills.  I forget why we came to live as nuclear families either in fact or in terms of an ideal that then influences our expectations.

Maybe work is already done in this regard, about what might be a more natural living arrangement for groups of people of different generations, genders, abilities to contribute to the unit either through caretaking or through bringing in resources like income, in our current society.  If it is, maybe we could please hear more about it in those places in the media in which we hear what the psychologists, sociologists, biologists, neuroscientists, and other favorites are doing.

Repeating patterns

November 14, 2011

I thought my dad might be a good candidate for writing a “life report” as David Brooks requested in a column, I thought he might enjoy doing it and I thought his contribution might be helpful to others as an example of a interesting mixture of conservative and not so conservative interpretations of life.  He had said something about my doing it with him, and I had thought I would like that, too.

But the October nor’easter intervened, and for whatever other reasons, my dad says he’s too busy to do it.  I brought it up when I called him last Friday in the mid morning.  He was eating lunch but wanted to take the call anyway.  In fact, he said that Fridays would be a good time to call him — it sounded as if he was asking me indirectly to do it more regularly.

On the one hand, it’s kind of nice that maybe my dad has finally figured out a place in his life for me (in addition to providing him with a son-in-law he really liked — Willy was one of the few things we agreed on).  On the other hand, while we talk about a lot of things, there does seem to be a care-taking element to the phone calls I have with him.  Which is not inappropriate in a relationship between an adult daughter and an elderly father, but my life has been out of balance from an excess of adequacy (my apologies to Gordon Williams, again) of care-taking for years, and quite frankly, I’m pretty exhausted as it is.

But I can do it, it’s not really asking that much.  And in his own way I think my dad has tried to do what he can for me.  I don’t want to get stuck on strict reciprocity — we each have different resources — and I do think that people are doing their best.  I suspect my challenge is to figure out how to help my dad without draining myself, which seems to be my general challenge in life — I’m good at care-taking and I fall into it easily, sometimes voluntarily, sometimes encouraged or even required to do it by others, including various institutions and systems over the years, sometimes a mixture of the two — I agree to do X and it turns into Y.  And I think what’s happened here is another iteration of what Gita in a sense has warned me about, namely trying to collaborate with someone else on a project that involves writing — it always turns into something else, usually at some cost to me.  (Its origins seem to go very deep — I think it used to involve profound stuff, now we’re down to things like legal history and life reports.)  But maybe it gives me another chance to figure out how to give of myself in a different way, one that is both more helpful to others and less draining to me, and maybe that will help me resolve this pattern.