Search Results for "mother"

Mar 10 2016

More thoughts on my aging mother

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The sadness I feel when I visit my mother is often close to unbearable. But obviously, bear it one must. When I leave I often physically shake, like a wet dog, to shake off the feelings and move into the rest of the day.

But sometimes the feelings stay with me, like a burr on your sock. You know,  the kind that you notice because its got a small itch or irritation from the spines going through to the skin. You reach down and try and pull it off, but it won't come, because it and its 15 sibs are stuck tightly in the fabric of your socks. So you pull on them, and pull the sock away from your leg, and it seems better for about 10 minutes, and then that creeping little itchy irritating feeling starts coming back, gradually until you feel like you can't stand it any more.

Some days, that's how I feel after seeing my Mom. I am thinking about how she was, when intact (a very mixed bag indeed). I am thinking about what she is like now and what I can do to make it better for her (probably nothing, other than visit more). Sometimes I am thinking about how furious I am with my brother and sister who have effectively abandoned her. Yes they know that I am here, and I am watching and taking care. And if I wasn't, I believe that they would step in. Except, except.... the long cathartic paragraph I just erased about my sibs was best as a catharsis, and not necessarily entertaining for all of you.

So I write about my mother to honor her. I write about my mother to remove that burr from my sock so I can get on with my day. I write about my mother so that even if you don't know her name, her accomplishments, or just her, what she has done lives just a little bit longer.

2 responses so far

Oct 12 2014

Dreams and Mothers

I read a marvelous post by activist Deborah Jiang-Stein which is an excerpt from her new book. I don't want to give away the punch line, which is very powerful.

Part of that power was to make me think about lost children and lost mothers. No, not think, feel. I've written some about my mother, who was a powerful mentor to me from when I first thought I wanted to be a scientist. Aside 1: here is a difference between a boomer & a younger: My instinct is to say "when thought I wanted to be ..." and my junior colleagues would say "when I knew I was going to be...". Moving on.

My mother has end-stage Alzheimer's disease. When I moved to my new almost-MRU, I brought her with me. I had taken my last job at the old-MRU to be in the same city as my parents at the ends of their lives. My mother now needs 24-care, and I am extremely lucky that she saved enough money for this wretched end of life. Aside 2: anyone struggling with this issue who would like advice and suggestions based on my history, email me, we can talk. Right now, my mother is not the person who mentored me, fought with me, and over the years said many hurtful things. The person she is now is a different person. This is very hard for my sibs to understand, and they seldom visit her any more.

It's not entirely wretched. She has a little speech, but no language. She cannot feed herself but she loves ice cream. She smiles at me, sometimes. She gets angry, still. And she will occasionally kiss me, though she gets kissing and eating mixed up sometimes. And once when I laid my head down on her shoulder and started crying, she put her arms around me and made soothing noises.

One memory of her, of something that infuriated me at the time. Earlier in her disease, she'd have no time sense and call at all hours. She went through a couple of months where she'd call in the middle of the night and ask about the "little ones" or "my small ones". Sometimes she would be in a panic, not knowing where they were. I learned to say "Mom, I have the little ones. They are with me tonight. They are sleeping but they love you". Sometimes she would ask "are they safe?". Sometimes, she would say "that's good" and then just hang up. Now I hold onto this memory like a worn-out good luck charm.

I am friends with some of her friends, now in their 90's. Women of that generation at any MRU all knew each other. Most are sharp and insightful and a joy to talk with. They tell me stories about my Mom, and often those stories will trigger dreams. In my dreams my mother is intact, and talks to me. We fight a lot, which we did before. But she's there. She's talking to me. And that is enough.

Oh, one of my mother's best comments to me:

Get a PhD, not a husband. A PhD is more useful.

 

2 responses so far

Mar 15 2017

Why I write (elderly support edition)

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I've written a lot about my Mom, her dementia, my caregiving during the process. I've gotten lots of support here, for doing so. I thank you all for that. I feel like this community understood what I meant, and to a large extent what I felt.

Of course, not everyone. I've gotten some good & well meaning suggestions about how to deal with dementia. I've also gotten some stronger, and I suppose equally well meaning if I could get past the instructions on what to do, suggestions.

Here is from a comment I wrote to one of the obviously well-meaning bits on taking care of the elderly:

As for this post, it is about the feelings I have had while taking care of my mother, while watching her die . None of us [who do what I did] is looking for, expecting, or hoping for things to be different. We are telling our stories because that is how we cope.

We are telling our stories because that is how we cope. We read each other's stories so we can learn each other's coping strategies. Please, I don't need instructions on how to be a daughter. I've had plenty of experience.

13 responses so far

Mar 14 2017

Marriage and divorce and women (scientists & otherwise)

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I started a post this morning about generations and anger and the world at large. As I thought back on what it felt like to me, when I was a sprout, a particularly strong memory came to me.

About this time four men I knew, professionally, at work, were getting divorces. One was my dept chair, one was a person with whom I wanted to collaborate, and the other two were co-teachers in then large and topically integrated first year med school class that was my teaching assignment. White privileged men, but all took some interest in mentoring me, and helping me. The dept chair had been very much responsible for me getting the job I did (when most of the other candidates were significantly senior, and already had tenure track jobs, I was just a postdoc at the time). But, in today's climate, let me be clear, there was no inappropriate behavior or pressure. It could be that they were honorable. It could be that I have always given off bristly signals, and have not, am not, and do not give off traditional female signals. No body has ever accused me of being sexy, let alone attractive.

I did not really know any of the wives, having met each once or twice at social things. I was kinda used to this by now. I had been the only women in several programs I had been part of it, and was used to the awkwardness of work related social situations. But mostly these were wives and mothers and women who had given up careers for being wives and mothers (most were Silent Generation, and some early boomer generation women). When I was younger I was more dismissive of women who were not professionals. I'm older than that now. I knew two of them and they struck me as being not very nice to me, but this is through my memory and thirty years of growing up.  The other two were just frosty the figures, no one I would want to marry (not that same sex marriage was remotely on the horizon even then).

But the memory that is strongest is something along the lines of: while I wouldn't want to be married to any of the women, I certainly wouldn't want to be involved with any of their husbands. It made me glad to be where I was (at the time) in terms of my life. Of course, in retrospect, there was not a lot of "work/life balance" in my world at that time. You did science/research/medicine or you did not.  But looking at these men & their lives, set up some major cognitive dissonance, as these were men I (sorta kinda) admired in the professional arena. Yet, they were pretty much schmucks in their private lives.

It was one of my early lessons that people can seem different in different contexts. People *are* different in different contexts. These men tried, a little, to protect me from the only other woman in the department, a toxic senior woman (to whom, in memory, I try to be more generous, her road was likely harder than mine, but really, she was evil).  They helped me to get funded, to start my career, to help me a success. I'm still glad I wasn't married to any of them.

 

 

But the

 

3 responses so far

Mar 10 2017

Taking care of our elderly

Last weekend I had breakfast with one friend, and dinner with another. They both are caregivers for their Moms. Both, however, have recently moved their Moms from home to assisted living/Alzheimer's units. The medical conditions are different in these Moms, and the personalities were different before the disease.

Yet, dementia brings on changes in personality that are as tough as they are predictable. Some is a loss of executive function, and the ability, nay desire, to say whatever enters your head. I remember "You can't be my child, because I don't have so many horrible genes". Some is anger at loss of function, or bluster for covering up mental lapses. One parent of a different friend became sweet and kind and charming. But that's the only one I can recall that the changes were perceived as an improvement.

My friends are women I've known for a while, the three years since I moved to almost-MRU. They've listened to me go through the pain, yes the pain, of watching my mother slip away. We've talked about this over the years. One friends mother is just in the beginning stages, and the other about a year behind my mother. The emotion burden is huge. And I will admit to feeling some relief when listening to them that these particular stages were over, for me.

One of the moms is angry. All the time. Painfully angry. Demanding people who are gone. Demanding the presence of my friend, all the time. It is hard to leave your crying mother, whether she is angry or emotionally bereft. I know this feeling. The only thing worse is when they forget to ask you to stay, just a minute more. Or when they can no longer scream at you, demand, plead.

The other mom has lost language. At first, language loss, albeit with speech, still, seems a relief. No more harangues, no more ridiculous requests, no more crying for people who have been dead for 20 or 50 years. But quickly,  for children caring for parents, this becomes a new loss. One of the things about AD is that you lose your parent or spouse or friend over and over and over again.

Each stage, each change is a knife in the heart. Some days, leaving my mom, coming home, I would look down at my chest and expect to see blood seeping through my clothes. I would think: this is the worst it can get. My mother was no longer crying for specific people, but tears and tears and tears for unknown sadness beyond words. There is often no way to comfort people with AD. They are angry, and then worse, they do not know you want to comfort them.

 

My friend, whose mother no longer has language, who is drifting into that twilight where neither mother nor daughter can see anything, showed me a picture of her mom. Here it is, with my friends permission. I took one look, and knew that it was the same picture I had of my mother. Our mothers, who remembering nothing else in their lives, remember being a mother.

 

12 responses so far

Feb 18 2017

Some days are just a struggle with old memories

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One of the issues of getting older is that there are a lot more memories. Just as someone in their 30s, struggling with a job, a partner's job, maybe a child or two, has a hard time remembering whether this thing happened in when they were 8 or 9, I sometimes have trouble remembering whether it was this student or that who did the study that actually 20 or 30 years later turns out to be relevant for something this student, right here, wants to do.

But those memories aren't the struggle in this title. The struggle is when some memory trips my "mother" or "father" circuit. I spent so many years distancing myself from my parents. They were difficult when I was younger. They totally supported me, my decisions, my career. That was much more than many of my women friends had from their parents. "Darling, if you must have a career, why not be a doctor or a lawyer. Why do you want a PhD in botany of all things?".

I spent so much time distancing myself, exerting my independence, my sense of me. When I finally moved back to the City Where They Lived (and oh, yeah, I grew up) to take care of them at the end of their lives, I had a strong enough sense of self that I did not have to work at being me. That didn't stop me and my father from fighting. That didn't stop me from being totally aggravated by my mother's early dementia.

Now, I would give anything to have a cup of coffee with either of them. To listen to them tell me what to do with my life, how to organize my CV, or what I should be doing about my teaching.

I am not telling you, dear readers, to go hug your parents. Your relationship may never have gone through the spasms of closeness and farness that mine did. Your relationship may be beyond repair at this point. Or you may still be in the phase of learning to be you, and be an adult, and be separate from your parents. Nor am I writing to say "I am sorry" to them. I did the best I could. The path that I took made it possible for me to arrive at the place where I could care for them when they needed it. I am writing for me, for the catharsis. I am writing to say: Mama, Papa, I miss you.

8 responses so far

Nov 21 2016

Dementia is an Insidious Disease

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When the experts, of which my mother had been one, say a disease is insidious they mean the symptoms may not be obvious at first. Other definitions:

An insidious disease is any disease that comes on slowly and does not have obvious symptoms at first. The person is not aware of it developing.

A disease existing without marked symptoms but ready to become active upon some slight occasion; a disease not appearing to be as bad as it really is.

In my book: a disease that lets you fake it for a rather long time.

Insidious in common parlance has a very strongly negative sense: evil that lurks and only gradually emerges. That part of the definition seems just right for thinking about dementia. Dementia is an evil disease, more so than the fact that all diseases, all illnesses are evil.

Is it worse to lose your mind or your body? Let's set aside for a moment that one's mind is part of one's body. This dichotomy may or may not be particularly useful for understanding health and illness. Yet, if you talk to the elderly (and I don't mean functional bluehairs and greybeards, I mean the folks staring hard at the end of their life), they make a very clear distinction in this.

My father lived well into his 90s. He was physically slower, but could still get roused for a good argument about what my (my!) CV should look like, why this or that politician was full of it, or whatever cause-du-jour attracted his attention. But he could barely move; years of playing handball, running and lifting weights had destroyed his knees. I am pretty sure he was depressed for all sorts of reasons, including that my mother's dementia precluded their massive arguments about everything. Yet, he could set that depression aside to tell me the truth about whatever he had just read on the internet. His favorite site, btw, was Arts & Letters Daily (a good compendium of ideas, thoughts and stuff you had no idea was as interesting as it proves to be).

Physical decline is less insidious: its there and obvious and in your face each day when you wake up in pain. From his perspective, his body, gradually to be sure, failed to keep its half of the bargain with his mind. When my father died, he was tired. He went to sleep and didn't wake up. My mother never thought she'd outlive him. But she did. By many years. But she never knew this, and never will.

She was in complete and entire denial that anything was wrong, and that is part of the cruelty. My mother came from less-than-working-class family. My grandparents were illiterate, and had gone to work in factories as young children in New York City. Her mind, her brain, her personality is what carried her out of poverty to being a med school professor in the days when such women were counted in single digits at any school. I can imagine there was nothing more terrifying to her than losing that by which she defined herself. Her response differed only slightly from aging athletes who know, deep down know, that they cannot recreate the triumphs of their youth.

This is the evil part, but what about insidious? All of my immediate family had large arguments about what was happening to my mother. I saw signs before my sibs and father. One of them actually said: "you really hate Ma, don't you? You want her to be demented." My mother and I never got along. She was a marvelous mentor, and I loved her, as a daughter loves a good mother. But, we fought bitterly through my adolescence. We struggled to define a good relationship in my adulthood. But irrespective of that relationship, I was not anxious to see her ill or see her demented. We fought, but I did not, do not, wish dementia on anyone. I didn't know why this scared me so much at the time, but the caretaking I've done over the last 15 years gives me exquisite hindsight.

My mother has died. What was it, what, 3 weeks ago, already? More? It still feels like yesterday to me. I know it was time for her. But, for me, why did it have to be so soon?

18 responses so far

Nov 18 2016

Ode to Friends

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This post was going to be about my mother. But I realized as I wrote it in my head that it was really about my girlfriends.

A few days ago, I was feeling sad about my mother, and I saw a picture, taken at some local fundraising event, of me with six of the most marvelous women in the world. They are marvelous because they are my friends.

When I see a picture like this, one of Urusala LeGuin's short stories pops into my head. It's a story set in her universe from Left Hand of Darkness, a powerful book unto itself. The story is framed as a series of snapshots, a this device that echoes one of the themes of the story, how our memory is often frozen like a picture.

The picture with my friends is still fresh, it was only last week. But in a month or two, I will remember the event, but not feelings exactly at that moment.  Maybe in a year or two, I will not remember even where we were at the time.

I look at the picture, and I know similar ones exist, ones with a different mix of people's faces in them. I know, because I've seen them. And while I don't know the faces in those pictures, on Facebook, on Twitter, in miscellaneous blog posts, I know the feeling.

These women love me and each other. And it doesn't matter how smart or thin you are. It doesn't matter if you work in a factory (as one does) or teach school (as another does) or have several squillion NIH dollars (or not). It doesn't matter if you are fat or fit. It is a friendship born out of shared time together, of helping when things are tough, and looking out for someone else.

I have not always had time for women like this in my life. And now, looking back, I know why I didn't have time. I am not even sure, as wonderful as having such women in my life is, I am not sure that I would be here, now, where I am if I had. Family and job often sucked everything out of me. But there were also times and places in my life when I thought these women didn't exist, or at least exist for me. And that was wrong.

When I moved to almost-MRU in the Middle-of-fracking-nowhere (as it seemed to me at the time, I know better now), I was emotionally devastated. I had probably hit 5 or 7 of the top 10 stressors in life (although not getting funded by NIH isn't on most standard lists, it is on ours). As I have at other times in my life, I plastered "I can make this work" smile on my face, and stood up and taught large classes of frequently indifferent students. I sat in front of a computer and lost myself in data. Or in grant proposals. But I was not happy in my Potenmkin Village of life.

And I found these women. They didn't just fall into my life, although that is possible. I found them, and made an effort towards friendship. Without meaning to, they saved my life. I know that I have, on occasion, saved theirs. These women are there for you. They are worth finding. They are worth the energy of reaching out to. They will save your life.

 

 

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Nov 02 2016

(more) NIH instructions on writing grant reviews

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From a previous post: I am ad-hoc'ing on a study section, again. I have received more, and new to me instructions on writing reviews. I repeat why I'm including this here:

One of the best lessons ever: the more you understand about how NIH works, the more likely you are to get funded.

I want to specifically address the problem (from questions in the Twittosphere): why did I get a "29" if there are no weaknesses mentioned in the review?

Compared to 20 years ago, when I stared reviewing, NIH (CSR) sends a tremendous amount of pre-review information and instructions. This is from the (longer) cover email to reviewers titled "General guidance for all sections of the critique".  Let's take a look at what NIH tells its reviewers about scoring (earlier thoughts here).

  • Scores of 1-3 should be supported by clearly articulated strengths.
  • Scores of 4-6 may have a balance of strengths and weaknesses.
  • Scores of 7-9 should be supported by clearly articulated weaknesses (or lack of strengths).

We were told, over and over that to start with a 5, and move up or down from there. We were told, over and over, to use the whole range. More detail, the emphasis mine:

Scores of 1-3 e.g. Applications are addressing a problem of high importance/interest in the field. May have some or no weaknesses.

 

Scores of 4-6  e.g. Applications may be addressing a problem of high importance in the field, but weaknesses in the criteria bring down the overall impact to medium.

OR

e.g. Applications may be addressing a problem of moderate importance in the field, with some or no weaknesses

 

Scores of 7-9 e.g. Applications may be addressing a problem of moderate/high importance in the field, but weaknesses in the criteria bring down the overall impact to low.

OR

e.g. Applications may be addressing a problem of low or no importance in the field, with some or no weaknesses.

Understand that a worse score is not just weaknesses in the proposal. It can be a lack of "importance". There may be nothing wrong with the importance of the proposal, it just doesn't rise to a level that gets above 3. Importance (significance and innovation) are critical. From an old post:

impact = function of {importance (significance, innovation), feasibility (approach, investigator, environment)}

Two parts of impact, the importance and the feasibility. These are not my thoughts. These are taken from various NIH web pages (of which there are many, many, many) talking about writing proposals.

So, how do you get to importance, significance and innovation? That is, if there are no weaknesses, what can one do to ensure that reviewers think the work is important? Firstly, figure out what the target IC wants to fund. But the rule before even that, is figure out what the target IC for the proposal is in the first place. Here is one thing and another I wrote a while back on IC's and finding one. Secondly, do your NIH RePORTER homework. Figure out what is currently being funded. This is often a problem for snowflakes. Or even people who are not snowflakes, but live in an echo chamber department, where What We Do is The MOST Important Thing in the World. Take a good hard look at why your problem is an important problem. Try explaining to your mother or your nutsy Uncle Fester. If they can't get it, likely the SS won't either.

 

4 responses so far

Oct 21 2016

The ego blows that are NIH reviews

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Recently on the tweets:

I wish to be fair to Sean, who is thoughtful and was trying to make a specific point:

 

@pottytheron I really am not talking about her score, or the outcome.

— Sean Eddy (@cryptogenomicon) October 20, 2016

and

 

@pottytheron no, and to be clear, I'm not complaining about outcome. I don't think those *particular* critiques are good for the NIH system.

— Sean Eddy (@cryptogenomicon) October 20, 2016

and

The NIH process favors large laboratories. Solo theoreticians have a rough time. But we need theoreticians too. @drugmonkeyblog

— Sean Eddy (@cryptogenomicon) October 20, 2016

Sean felt that these reviews discouraged, significantly discouraged to the point of leaving science, a promising young scientist. He said that these reviews were another straw on the camel's back.

I do not know the person to whom Sean refers, and can't even take a guess at who it might be. But I've seen this story many times. Heck, I've been part of it on both sides. I've given what I thought was a fair review that probably wounded some young scientist to their very core. I remember when I was that scientist. Truly, even in those golden olde dayes, there were NIH rejections, and some of them had unpleasant comments that were a bit beside the point. And a critique to my mother, in the 70's or 80's: Why should we study heart disease in women, since we know how it works in men. This would be a waste of funding. Ah, there has been some progress.

My response here, longer than a tweet is twofold:

First, the substantive claim: that NIH does not care about "small science" or solo-practitioners or small-dogs.  This is just blatantly not true, as much as NIH can be said to "care" about anything. NIH may not prioritize theoretical or small lab, but it does not penalize for it either. I don't have DataHound's data on this, but I have always been small, and I've mentored people who stayed small (one trainee at a time, no tech). They get funded. They do. NIH does support theoretical work. I know theoreticians with funding.  But they publish, even if most of their papers are single -authored. Yes you publish less when you do not have an army generating data for you. But probably one paper every other year is not sufficient, no matter what your science. Please don't tell me about the snowflake nature that makes more than 1 paper every other year impossible. Shades of Maria. It may be wrong. It may be cruel. It may not promote the best science and research. BUT... if you want to survive, get tenure and be part of this world, you must publish.

Second, the response of a junior person to rejection and review comments that range from cruel and hard to silly and stupid. It happens. I would love for this to be a world where we all sing Kumbaya all the time. But its not. Expecting the world to take care of someone's ego is not a good strategy. Sometimes those comments are not meant, delivered or in reality as ugly or nasty as they are perceived. My unvarnished truth (for example, "concerns exist that with this level of productivity, this PI may not be successful if funded") may be your hurtful ad hominem ("I am publishing as much as I possibly can"). Your blisteringly obvious hypothesis is totally opaque to me. Everyone hates peer-review, but damned if I can think of a better system that would be less biased, less idiosyncratic, and produce less garbage at the end.

Everybody gets rejected. Everybody. Again, the world is far from perfect, but if you want to give up after your first rejection, you are not going make it. Your first grant rejection is nothing compared to what is coming your way.

 

4 responses so far

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