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.

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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.

 

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Jan 29 2018

Time passes

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It is well known that the perception of time passing is a function of many variables: happiness, health, all sorts of things. But age is one of the strongest. For the youngest it often drags, and for the oldest it runs away before one can hold it.

This week I have been reminded that the generation of my parents is leaving. One of my father's surviving sisters died, although one sister is still alive. My mother's best friend turned 93 and she is frail, although mentally sharp and glad to talk with me still. A friend of my mother's from when I was a small child also died last week. I have stayed in touch with her children. The husbands of all these women died years ago.

Here are some pictures. My aunt who died is in the woman in the two left side pictures. My mother and father are in the two top on the right - my Mom has glasses. The baby in all the pictures is my cousin, with whom I stayed in Israel last year. They were all so very young and beautiful.

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Jan 25 2018

last bit on outreach: personal efforts

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Potnia, why are you not working towards X?

Where X is: outreach, gender equality, affordable childcare, affordable eldercare, Queerrights, evolution in schools, taking back the Senate, saving the turtles, the rainforests, the tundra, the icecaps?

All of these are things I care about passionately. These are all things I have given some financial support to. Well, maybe not the tundra. Keeping NSF funded, keeping NASA funded, vaccine education, science education, freedom of speech, the integrity of our constitution, a safer and welcoming world for transgender people, the Deaf, people with physical disabililties, people with mental disabilities, the Chesapeake Bay. Women in countries that deny them a vote. Countries where no one gets to vote.

There is a long list of what I care about. My family, my students, my trainees, the young women in my department, the URM in my University. The homeless, the disenfranchised. They are often tree rings that circle out from me – some are closer in my life everyday, some every week, and some not so often.

I cannot do all of these things. I cannot even do several of these things and still be the scientist and teacher and mentor that I consider my primary job. And that is cold, hard reality.

But there is one more thing.

I was talking with a very smart, very active woman of my age, who I met on vacation. She is a prof in a related field, and is Famous. She is very good. She is very active. We were trading war stories, although her sub-field may have traditionally had more women than mine, we are still of an age where we were often “The Woman”. She had changed much in the world and fought for people who could not fight for themselves. I told her some horror stories about the Chair from Hell at my old MRU, and she took me to task for not recording them and “leaking them”. I had thought briefly about doing that at the time, and had rejected it. I was pretty sure that it would cost me my job, and I was not yet ready to leave MRU. I was doing active parent care at the time and I couldn’t up and move for a new job. Or if I had to because I was fired, who would take care of my parents?

(see here and here and here. I think some of my best writing was about coping with my parents).

And therein lies the problem. We all make compromises. None of us is perfect. Sometimes it is cowardice and unwillingness to face what must be done. Sometimes its weighing two things and deciding which is more important, right now. And sometimes we just run out of steam.

If you do not see this, go read Toni Morrison on what mothers will do for children.

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Dec 18 2017

A teacher's reaction to forbidden words

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The CDC has just released a list of forbidden words:

Policy analysts at the Centers for Disease Control and Prevention in Atlanta were told of the list of forbidden words at a meeting Thursday with senior CDC officials who oversee the budget, according to an analyst who took part in the 90-minute briefing. The forbidden words are “vulnerable,” “entitlement,” “diversity,” “transgender,” “fetus,” “evidence-based” and “science-based.”

and

Other CDC officials confirmed the existence of a list of forbidden words.It’s likely that other parts of HHS are operating under the same guidelines regarding the use of these words, the analyst said.

The only reason we know this, now, is because someone leaked it. The implications are for policy decisions and budget requests for the coming year. This all feels very Orwellian (time to reread 1984 and better yet Farenheit 451).

It is not at all clear why the words are being forbidden, at the operational level (as opposed to the higher levels desires of the people in charge). I read somewhere that it was a recommendation for getting approval from either Congress/Executive Branch, which sees these as trigger words. However, it is clear that whether it is externally generated censorship, or the internal kind that comes when the author is too aware of what others don't like and self-limits, it is not going to be a good thing for science.

But censorship is censorship. And I teach at a public medical school in a purple-ish state that has had its political tilts to the left and to the right.

I use one of these words in teaching: fetus.

Fetus has a specific meaning for clinicians and developmental biologists. For OB-Gyns, and neonatologists and pediatricians. For people who work on developmental biology in mammals. For people who are trying to make life better and understand the grandeur of life.

I have taught embryology for over 25 years to various and sundry populations of students. We use the word "embryo" for the period of time called "embryogenesis" which lasts roughly from fertilization through 8-12 weeks. During this time organogenesis happens: the formation of organs from the original single fertilized cell. The next period is the "fetal period" where largely growth and maturation occurs (as opposed to new organs forming). "Neonatal" and "Perinatal" are the time around birth. There are some finer points here, and different people studying different aspects have slightly different definitions.

But, to all of us the word "fetal" means something very specific about the biology and physiology and anatomy and development of what is occurring. We use words, we define words, so that we can have a conversation about things without having to resort to extra pictures of waving our hands. Commonly defined words serves the important purpose of mistakes from happening.

As an exercise, go do the "1000 words" thing. Try to describe something using only those words. Its a fun game and ..... But it is difficult for scientists and clinicians to do this as more than a game. We use specific words. We need specific words.

And I use many of those specific words every time I teach. Not just embryo, but uterus and placenta and synsciotroph (tissue that makes the placenta possible).

If you start telling me what words I can use to teach. If you start telling everyone who teaches the next generation of clinicians, not just physicians, but nurses and physical therapists and respiratory therapists and everyone who needs an understanding of anatomy and physiology and neuroscience to take care of infants, what words they can use, we will have a generation of people who cannot do their job  as well as is possible.

One of my favorite lectures to give, and judging from feedback, one of the lectures first year med students like the best is "The Fetus as Patient". There are so many things I could talk about, but I focus on a few, to do them better than running through a shopping list of what can go wrong. I cover what are identical twins, how is a placenta formed, and importantly what is the circulatory system before and after birth. These are all sources of "birth anomalies" things that are clinical problems for infant and mother. But if I can't use the word fetus (and what comes next? pre-natal? placenta? umblical cord?), it becomes harder to give this lecture. It becomes harder to teach. It compromises what these students know and how they will take care of their patients.

Forbidding the use of words is something that never ends well. It does not make the words go away. It limits how people can communicate, and in the case of medical words, it will surely compromise the health of someone.

See also: Mike the Mad Biologist on this.

 

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Nov 27 2017

A few thoughts on elderly parents (part 3): Dali Lama edition

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The Dali Lama said to live one's life without regrets. I've always loved that, because it has multiple meanings. Firstly, don't do the things you are going to regret later. Try to live, right now, in the way you wont regret. Think before you act. But also, once you have done thel iving, stop regretting. Move forward. Can't change the past and all that.

And that is fine advice for interactions with aging parents or other rellies.

I was in New York for TG, to visit family, with, alas, no time for friends. But I did make time to visit my aging aunt, one of my father's two surviving sisters. She is in her early 90s, and frail. She wants to do things for me (make lunch, give me ice cream) and it is painful to watch, both because it is so hard for her, and she wants so much to give me things. I finally did reach out, take her hand, and say "Aunt Bas, I love you, just sit down and talk to me. Tell me stories about your mother, my grandmother, and all the family I never knew".

I started visiting her a while ago, when another cousin Amy, with whom I have stayed in touch, urged me to do this when I visit NY. I hadn't seen this aunt in over 50 years, as she and my father were not close. But I try and go regularly and send her letters (phone calls are hard given her deafness, and Skype is out of the question). For my part, I want to help her. Her apartment is a disaster. Not hoarder status, but piles of boxes and old NYTimes everywhere. She said her bills are a mess. I want to sit down and sort them out for her. But she has an adult daughter, Evie, my age, who comes and helps her. My aunt complains about what her daughter doesn't have time for. But, I suspect this is a case of everyone being the hero of their own story. If I was that daughter, and some other relative wanted to step in and help, I'd tell them to get lost. I want to help, but I do not know what I can do, other than visit when I can, and even when its difficult for me to do. I will call my cousin Evie, who I don't really know and I haven't seen since we were kids (which is that same 50 years ago).

I ask myself, now, what would I regret here? I would regret causing any pain to my cousin, Evie, my Aunt's daughter. Her road is plenty challenging as is. I would regret not learning more from my Aunt Bas. She is really the last link I have to their generation. My parents lived in New York when they were young. My mother went to Hunter College. She lived at the 92nd St Y. I do not know much more about their life their, other then a few apocryphal stories about how they met. And that my father introduced Aunt Bas to her future husband. But, my parents, what did they do? Where did they go? What was their New York? I will never know, and I try not to regret not knowing.

So, I will be respectful of my cousin, who is probably in the horrible place I've talked about so many times. And I will visit my aunt, and love her, and see my father in her face and her words and her mannerisms. And I will not regret.

 

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Nov 01 2017

Taking care of one's elderly parents

Taking care of one's parents is one of the things that happen at the end of life. It's harder than childcare, because with children the trajectory is up, the future is hopeful and open. With elders, the end is sad and downwards in many ways. And eldercare is always more expensive than child care. Paying for wonderful, brilliant, enriching child care is justifiable based on that hopeful future. It is easy to argue about cutting corners for someone with Alzheimer's. Really it is. I've heard it. And sometimes, too, it squeezes, time money and energy,  because you have kids you are taking care of, too.

My good friends Melissa & Strange are coping with Strange Mom, and some of the issues that accrue at the end of life. It (as usual) is a good read here (and update here). They are at the intersection of elder stubbornness, ill health, distance and a medical system that is optimized for things that are not necessarily in the patient or family's best interest. My heart goes out to them. [and if she does poop, you just clean it up. may that be the worst that happens].

At best, Medicare is frustrating, at worst, it is a bureaucratic nightmare that works poorly, and somewhere in the middle it doesn't cover what is needed. No one has ever saved enough money for what they need at the end of life, because, no one ever thinks they are going to need it.

Here are things I know are true:

The folks in charge at the medical end may mean well, but I frequently wanted to scream at them. They speak a different language. When I would ask for clarification they would say the same thing, but maybe a little louder. No I'm not hard of hearing. Nor am I stupid. You are just speaking a different language, and I do not understand what you mean. I have (medical & logistic/medicare) knowledge, and that helps, a little, but not a lot. Then, I would think about friends who don't know the medical system, and realize their frustrations, anger and sense of futility was, is, and continues to be, far worse than mine.

The social workers may be saints on the inside, and most of them care, oh do they care. But, there are rules and regs and moving an elderly person across state lines is like an 80 year old woman with walker going deep to catch a line drive. Not a chance in hell. The rules, they say,  are only "to protect our patients". And yes, I am sure there are horror stories about greedy children trying to get money. But these are people who have little, if any, resources, and I'm only trying to figure out how to manage this. Please stop throwing up roadblocks.

And then there are the other family issues. Dr. Strange is an only child. While in some ways that is sad, in others, it can be a plus. a feature, not a bug. Even, a relief, when you talk to people who are struggling with their sibs. I have a friend, who's Mom was a bit behind mine. I included her story and a picture of her mom at the end of this post about taking care of the elderly. Her Mom died a few months ago, and a new hell has opened up. Her sister is fighting over the shreds of "the estate". My friend gave up her job, and took care of her mother for 5-10 years. Her sister is suing her for mis-use of the estate (ie, taking money for caring for her mom). There are lawyers, and any money there might have been will be gone.  My other friend from that post is still caring for her Mom. Her brother and sister, who live near by, come on Mother's day and Christmas and her birthday to see their Mom. My friend is there everyday, and dealing with the angry phase of Alzheimer's. Watching your parents age, watching them lose what made them the human beings you love. Watching them lose poetry and words and memory is excruciating. Coping with the anger and the history of issues that all children have with their parents is just one more problem. No one's childhood was perfect, and some much less so than others. And dementia only brings out the worst pains from the past. Not to mention that dealing with your sibs is just one way of ripping off that scab.

So you are an only child, and must do it alone. Although if you have a good partner, they are there, and they can support you. Or you have sibs, and they can't or won't support you, and it opens along all the fault lines of your childhood. There is never enough money. There is seldom any professional support (even when you are a health care professional and speak the language). Our parents struggle for their autonomy, even as they feel it slipping through their fingers.

And then its all gone, and you'd give anything for one more minute.

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Oct 25 2017

A few thoughts on elderly parents (part 2): Stuff about the elderly that is hard

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It's hard for us. It's hard for them. But: no one likes getting old. I'm not talking about embracing the I'm post-menopausal and not afraid of death old. I mean acknowledging that one is frail, and of diminished capacity in one way or another.

So: many elderly probably shouldn't be driving. Their vision is worse, in some cases their sense of space and distance is worse. But we live in a society where for many, if not most, people, not driving is not an option. You can't get a loaf of bread or a gallon of milk, let alone anything else, without getting into a car. Yes, there is uber and lyft and taxis and public transport. But have you tried those for everyday stuff? Not easy. What if you don't have a credit card? or a smart phone? Yes, we are scared to death they will hurt someone. And usually it's a bad car accident that makes them stop.

Many people refuse to plan for, or acknowledge, or really do anything about getting older. They all think: "It won't happen to me". This is part of the driving thing, but also doing laundry if your washer is in the basement. Its getting hearing aids and new glasses. Its figuring out the new interface that the bank, the credit card, the Social Security administration has online. All of this is hard, and its doubly hard if you didn't grow up with the technology or you still don't type (when I was in high school, typing was a girl's class). It's figuring out what to do when you computer isn't talking to the internet and you can't see the hardware.

It's forgetting that you left the kettle on, till it burns through, but you are too embarrassed to tell your kid, the one who lives near by, and its too hard to get to Walmart to buy a new one (because that's all you can afford) so you do without tea or coffee, because it's all so very very hard. But you miss the coffee and wonder how it got so bad.

I used to get so angry with my father who didn't like his hearing aids, and refused to wear them and then  couldn't understand a word I said about trying to make his computer talk to the internet (again).

We are angry because they live far away and don't want to leave what little of their life they have left. We are angry because they don't want to move some place where they will be safer, and probably happier. And then they get angry because who are we, their children, to tell them, the parents, how to live? We are angry because we want to help, and they don't want our help. They want to be left alone, thank you very much. And both sides often say: "and if you're going to be that way, just hang up now and stop bothering me".

But we love them, and try to remember how they, as best they could, supported us when we were difficult and unpleasant adolescents. So we call back and try to help, no matter how hard it is. And for those struggling right now, I say: I only wish I could have one more fight with my father or mother.

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Oct 23 2017

A Few Thoughts on Elderly Parents (part 1)

One of the hardest things about "growing old" is watching those around you. I am still me, and day by day I may change, but I am still me on the inside. In some ways, getting older is like the frog in the pot. Put the frog in boiling water and it will jump out. Put the frog in cold water, and turn the heat up a tiny bit at a time, and the frog will let itself be cooked. Getting old happens a degree at a time. Before you know it, you have a belly and back aches and the strong desire to color your hair blue.

But while one is continuous and contiguous with ones younger self, one notices things in the other people in one's life.  Sometimes it just seeing a friend who you only see at the gym, out to dinner in fancy clothes. Sometimes its family members who live far away. These people have aged, and sometimes to a remarkable amount. The frog just jumps out of the pot.

The temporal bone is on the side of your head, and the temporalis muscle lies right above your jaw joint. They are called "temporal" not because your mind is your temple (despite what you may think). The "tempe" is from time, and the sides of your head, according to the ancients, is the canvas where Time's fingers first paint. Grey at the temples? Grey in time.

Sometimes it is not just grey beards and a shaky gait. Sometimes it starts being cognitive stuff. And if people dislike the idea that their bodies are aging, let me assure you that they like the idea of their mind aging even less. The clinical word for aging-illnesses of the mind is "dementia" de- for un- or bad, and "mentia" for mentation or mind. But as spastic, a very particular neuromuscular medical finding, was an childhood insult for kids you didn't like, demented is an insult for horror movies. And no one fancies themselves in horror movies, either as the monster or the victim.

So the first part of my advice about elder parents (or friend, or person-of-closeness-for-whom-a-standard-word-does-not-exist): acknowledge that it is hard for you. These are your (perhaps) beloved parents. Certainly these are people you remember being young and vital. They are people who (allegedly, in the best possible world, if things had maybe been different) cared for you. Who protected you. Who fed you, and now, now they are old, and weak and, yes, a bit pathetic, compared to your memory. This isn't easy.  I remember, well before dementia set in for my mother, seeing my parents walking down the street. Given where we were, at my sister's last apartment, they must have been in their 60's - the age I am now. I was going back to grad school, or postdoc? I had said goodbye and saw them walking away to visit friends who lived in the same city as my sister. They looked so old! This little old couple out of a movie or a story or something. Not my parents. I remember thinking: when did they get so old? And now: why didn't I run back and tell them that I loved them?

I've loved, been friends with, still am friends with, taken care of, and more, many "old" people. Old defined as older than me. Sometimes its not hard to be a friend to someone with a bad memory, or take a meal to someone who can't cook. Yet when it gets to be family, all the emotions get in the way. Stuff from when you were 8 or 12 or 16 or 30 shows up in your head, demanding attention. You may not be able to say "out damned spot" or you may, and the spot will stay. Just acknowledging it, seeing it, may help you set it aside.

One of the hardest things I did when my Mom was in the early-ish stages of Alzheimer's disease was realizing, and giving credence to the idea that I could no longer fight with her. That all the issues and tensions were going to be moot. She, strong intelligent and very hard on me, would get furious and stop talking to me if I tried to argue with her. And sometimes she would cry. If I tried to comfort her tears, she would double down on the anger and say very hurtful things, things she knew were hurtful. What kind of things? Things like "you will never be a good scientist". Or worse. She knew where my weak places were. In the beginning people with dementia are smart, and articulate and cruel. Executive function is one of the first things to go: the part of brain and personality that keeps civilization going, that keeps people from cursing and saying the worst that they think of.

I had to let go of the past. I had to say (and say over and over): you cannot fight with her. She is not the person she was. It felt unfair. It was unfair. It felt like she won in the end. That I could never convince her  of who I was? But who ever does win against their parent? By the time you can cognitively win, you are not playing and fighting with the opponent of your youth.

Eventually, I reached that place, and really, things were much easier for me. I was a duck and her words rolled off my back. Yes, Mom. Whatever you say Mom. There are other coping mechanisms. Other strategies. And, really, people who care. Let yourself cry and mourn what is lost, because truly, things are being lost. But you, you are still continuous with the glorious child that you were.

 

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Oct 16 2017

My day for surveys

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I got a survey, sent to people who were on study section from an independent scientist to ask about Sex as Biological Variable (see here and here).

Some of their questions were posed as "did proposals treat SAVB appropriately, yes/no" when the answer was "sometimes". Here is what I told them at the end:

The last few q's are difficult in that some proposals did and others did not, yet the questions are framed as all or nothing. Many/most proposals dealt with SABV appropriately. A few did not. Those were pointed out, and that was considered in the scoring.

In my experience (over 10 years on various study sections), the SABV policy has changed how proposals deal with sex.

Further, as a brief bit of history: My mother sat on study sections in the 70s & 80s. She was also part of a large (epidemiological) project that, at that time, was rejected to study heart disease in women because "we have the answers for men".

The world has changed.

 

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