Home > Making Disability Visible, Why Aren't You Reading This? > Tip-toeing Back Into Blogging

Tip-toeing Back Into Blogging

Hmm. I seem to remember this thing called blogging…used to do it all the time…lo these many weeks ago. Let’s see if I’m able to get started again.
The past month and a half I’ve been taking care of mom and working with my siblings to arrange everything for her to move into assisted living. Let me just say it takes a great deal of time and emotional energy to accomplish something like this, especially given that my mother still lived in the house she was (literally) born in. All along the way, I kept thinking (and my siblings kept saying), how in the world would we ever get this done if I had a full-time job?
One of my sisters looked into taking time off work via the Family and Medical Leave Act but it just was not practical. First of all, you aren’t guaranteed your same job back; second of all, you get no pay while you are off. I don’t know about you, but no one in my family can afford to go a week or more without getting paid. And, I suspect, if you can afford a week or more without paid employment, then some of the challenges we faced would also be much simpler. Money does make life easier.
So what do people do who have full-time jobs and can’t afford to take unpaid time off?


I really don’t know how they would get done all that we had to do. This just underscores for me the importance of agitating at universities for support for families. It isn’t just parental leave that’s needed; people need to be able to take time off to attend to all sorts of family health crises. It isn’t just women who would benefit from having a family leave policy in place. I have a male cousin who cares for his elderly mother; I’m sure he is not the only man in the world who is responsible for such care. At some point, workplaces have to recognize that employees are people with families attached, and they have to be able to respond to family issues in the short term in order to keep doing their job long-term. The Family and Medical Leave Act is such a minimal start. I suppose it’s better than nothing, but just barely. It sure didn’t help us any.
We were lucky that one sister had an employer who let her work from home, so that she could do the draining work of caring for my mother AND trying to get her job done during one period. A brother was also able to work from home for a period of time, making him available to help with the logistics of actually moving mom to the AL home. What if we didn’t have that luxury? What if I were working, too? How does this nation expect us to care for our elderly?
It is very frustrating. And again, I count my family as one of the lucky ones, because we were able to cobble together a set of arrangements, and because my mother has enough personal wealth to be able to afford at least a decent AL home. Too bad if you don’t have understanding employers, or you’re poor. Good luck, and don’t come asking for help, is our nation’s response to the needs of our elderly population.
In order to not be completely burnt out and bitter in my first post back, I wanted to point out a new book I read about in the Chronicle of Higher Education that may be of interest to you all. It’s a biography, “Elizabeth Blackburn and the Story of Telomeres: Deciphering the Ends of DNA” by Catherine Brady. From the publisher:

Molecular biologist Elizabeth Blackburn–one of Time magazine’s 100 “Most Influential People in the World” in 2007–made headlines in 2004 when she was dismissed from the President’s Council on Bioethics after objecting to the council’s call for a moratorium on stem cell research and protesting the suppression of relevant scientific evidence in its final report. But it is Blackburn’s groundbreaking work on telomeric DNA, which launched the field of telomere research, that will have the more profound and long-lasting effect on science and society. In this compelling biography, Catherine Brady tells the story of Elizabeth Blackburn’s life and work and the emergence of a new field of scientific research on the specialized ends of chromosomes and the telomerase enzyme that extends them…In Brady’s hands, Blackburn’s story reveals much about the tension between pure and applied science, the politicking that makes research science such a competitive field, and the resourceful opportunism that characterizes the best scientific thinking.

That certainly sounds like good reading! I suppose I shall have to add this to my shelf of biographies, though my list of “I’m going to read that just as soon as possible” books is already frighteningly long. Well, maybe some of you will read it before me, and if you do, tell us what you think.
Okay, I hope this is the start of more or less regular blogging again, but I’m still swamped with paperwork relating to my mother’s arrangements and finances, not to mention trying to get back into my own routine (which seems always to include yet another medical specialist that must be seen…sooooooo tired of going to doctors….) Wish me luck! That is, if anyone still reads this blog….

  1. Luna_the_cat
    January 9, 2008 at 5:57 pm

    No pay?
    Not guaranteed your job back?

    Wow.
    THIS is why people in Europe look at the average American in slack-jawed disbelief when Americans confidently assert in internet forums that they have the highest standard of living in the world.
    This is also why I am not going to return to the US to work. Like, ever.
    In the UK, there’s a statutory requirement for family leave being available, although there is considerable latitude in how different organisations implement it. Where I currently work allows 13 weeks of full-paid leave; you can take longer than that if you need to, but it will be at a reduced wage, and if you are away for longer than 6 months you are not guaranteed your original job on return. This is about standard, the previous two places I worked had precisely the same policy. Where the current job is slightly better than most is that they also allow flexible working by arrangement — either moving a full-time job to part-time hours, or making it for only part of the year, say during school term time, or just choosing different starting and ending hours — and you are also able to take a “career break” by arrangement which, although it is entirely unpaid leave, does guarantee you your job on return. This part (the flexible working) isn’t guaranteed — you have to apply for it, and sometimes it can’t be accomodated, and it’s always subject to a 6-monthly review — but at least the possibility is there.
    I wish you luck with your mother and family. Having to deal with something like this is horrible.

  2. January 9, 2008 at 6:05 pm

    Welcome back, Zuska–
    I’m pondering doing a similar sort of intervention for my brother, who has recently become disabled and then subsequently his house in Centralia Washington was flooded. He’s trying to live on $450 a month from Social Security Disability, and rebuild his house while barely able to walk.

  3. January 9, 2008 at 6:25 pm

    I really sympathize with your situation; I’m sixty-two and have been through it. You really are one of the lucky ones. Time off!! Are you kidding? Have you heard of the deep-seated value of leaving your family troubles at home. I worked for a major American Car Company with generous policies but I was still threatened when I was called for jury duty. Direct quote ‘Get rid of it” of course I was salary. I do believe being chosen would have been bad for me. In this global world, only world-wide work rules secure rights for anyone. Unless–of course–you have special skills and they really want to keep you. No, a simple engineering degree isn’t enough to get that done today.

  4. January 9, 2008 at 6:25 pm

    I really sympathize with your situation; I’m sixty-two and have been through it. You really are one of the lucky ones. Time off!! Are you kidding? Have you heard of the deep-seated value of leaving your family troubles at home. I worked for a major American Car Company with generous policies but I was still threatened when I was called for jury duty. Direct quote ‘Get rid of it” of course I was salary. I do believe being chosen would have been bad for me. In this global world, only world-wide work rules secure rights for anyone. Unless–of course–you have special skills and they really want to keep you. No, a simple engineering degree isn’t enough to get that done today.

  5. January 9, 2008 at 6:29 pm

    As my grandmother gets older, my family has been thinking about these sorts of things. It’s not apparent that any of us would be able to take a significant amount of time off work. It’s really quite scary to think about.
    Thank you for posting about the Elizabeth Blackburn biography. It sounds like something I’d be interested in reading!

  6. January 9, 2008 at 10:12 pm

    Welcome back, Z.!

  7. January 9, 2008 at 10:17 pm

    Welcome back! We missed you.

  8. January 10, 2008 at 5:30 am

    I’m glad you are back.

  9. January 10, 2008 at 5:30 am

    I’m glad you are back.

  10. January 10, 2008 at 8:50 am

    I’m an academic at a pretty elite university and my maternity leave — which is probably around ten weeks away — is UNPAID. That’s right, I already don’t get paid enough and I’ll be losing around $8-$9K of pay. And this was the best deal I could negotiate. We do need to agitate for better family policies at universities, but what has been frustrating to me has been that the other people in my program in the same situation — there happen to be a few of us this semester — are content with the unpaid leave. And if anything, one of them gets mad if I bring it up in anything but the most glowing, generous terms.
    We need to raise people’s expectations of what their employers should be doing for them in order to help them agitate.

  11. January 10, 2008 at 10:49 am

    Welcome Back, Zuska! Thanks for bringing up this important topic.

  12. January 10, 2008 at 11:49 am

    Zuska, I am the primary breadwinner of my family. (My husband is a stay-at-home dad.) When I gave birth to my son, I was “entitled” to 12 weeks of FMLA leave. But I was financially unable to take more than eight weeks — I took all my sick leave for the year (two weeks), all my vacation I had saved up over the year I’d been employed (another two weeks), and went for the remaining four weeks without pay. It financially broke us: fifteen months after he was born, we are still trying to recover. (Sure, we “should” have had six months salary in reserve; in fact, we did have some savings [not six months’ worth, though], which were completely depleted after our son was hospitalized at one week old, complete with a $750 ambulance trip, not covered by the insurance, along with the usual additional costs associated with a brand-new family member.)
    And then I had to stay well for the rest of the year, because I had no more sick leave. I did end up taking a day of vacation in order to have elbow surgery — just what everybody wants to do on their day off! — but I was fortunate that otherwise I did stay well.
    My employer did exactly what the law required them to do — no more, no less. If it’s bank-breaking for a well-paid postdoc, I can’t imagine what it’s like for a woman working a minimum-wage job.

  13. January 10, 2008 at 2:13 pm

    Wow! People still read my blog! 🙂 Thanks for welcoming me back.
    Luna the Cat, you are soooooo right. I am completely envious of the various family and medical leave policies in European nations, not to mention the extensive vacation time and really good health care policies. Sigh. It’s the rich folks who don’t want to be responsible for social welfare who work so hard to delude us into thinking we have the best of all possible worlds. Anybody who’s actually ever spent some time in Europe knows better. I suppose the longing for an adequate social welfare net marks me as un-American.
    Dave, Fred, Kate, and Rebecca, your stories are heartbreaking. I am so sorry.
    Hey, maybe if I ever get well enough to work again, I can hire myself out as someone who will do all the necessary paperwork and phone calling and so on when you are unable to do so because your employer can’t possibly exist without you for a day.

  14. polytrope
    January 10, 2008 at 2:26 pm

    We have been through all of this with grandparents/parents, and it is indeed hugely time-consuming (especially if you live anything more than five minutes away from them) and stressful.
    However.
    In our family a lot of the stress and hassle could have been avoided if the parents/grandparents had started to do some of the preparation themselves. If you know you’re getting on, or have an illness that is proceeding slowly then hey, start thinking about your future! Clear out some of those cupboards that haven’t been emptied for 30 years, take a look at local care facilities yourself while you still can, and then you are fully involved in all of the decisions that need to be taken. Certainly within my family the older generation did very little preparation and then expected kids (some of whom lived overseas) to drop everything and come back to sort out the crises which had been looming for years. Given the time pressures on the younger generation it’s more and more important that people make their own plans and arrangements in case kids can’t take huge amounts of time off work to help.
    Of course there are cases when things develop unexpectedly, and that’s totally different – but it surprised me that in my family people who had had long careers managing businesses and family suddenly abandoned the idea of organising themselves or making contingency plans once they retired.

  15. January 10, 2008 at 5:32 pm

    Polytrope that’s a great comment. In my case, I have no children, and I doubt the cats will do much in the way of organizing my move into assisted living when the time comes. Mr. Zuska and I will have to plan for our own post-retirement care.
    My sister, who has only one child, has already talked about beginning to make plans for herself and her husband because she feels that it is way too much to expect one child to be able to handle all that needs doing.

  16. January 10, 2008 at 5:47 pm

    Zuska, I am glad you’re back.

  17. January 10, 2008 at 10:15 pm

    Yah, she’s back 🙂
    I am sorry about the hassles you had to face with your mum. I am glad it is almost sorted out.

  18. Luna_the_cat
    January 29, 2008 at 2:33 pm

    Having gone through all this once, and anticipating doing it again, here are a couple thoughts you might consider doing for your own retirement/aging planning.
    1. Consider committing assets to a revocable trust, which can be made automatically irrevocable under a designated set of circumstances; say, that one or both of you die or pass a certain stage of dementia. This just sounds so cheery, I know, but there are advantages to this — in a revocable trust you can be your own trustee, whereas trusteeship can go to a designated manager (there are banks willing to do this) upon change in status. This allows you to retain control over your assets while you are able, but protects them from taxes and/or litigation or asset-seizing to pay for care or by con-men if you become unable to manage. It also makes paperwork at death or disability a minimum and protects your estate from probate.
    You can designate anything or anyone you want to benefit from the trust after your death, and can even put in clauses such as “upon my death x should be beneficiary of this trust, but upon x‘s death the trust should revert to…”, so you can exert more control over your estate than you can in a will. I have no idea if this matters to you or not, just be aware that you can do it. However, it may be more important to note that if your assets are protected in a trust, the state can’t seize them to pay for your care.
    2. Make sure that someone you trust, besides your spouse, also has medical power of attorney. It is all too possible for something to happen to both of you at once, and someone needs to be able to make medical decisions on your behalf. Better a trusted friend than someone you don’t know and who doesn’t know you.
    It’s legal hassle and expense now to set up, but better to do it when you are (relatively) healthy and unstressed than to have to worry about it when you already have a crisis going on, by which time it may be too late to do so anyway.

  19. Luna_the_cat
    January 29, 2008 at 2:33 pm

    Having gone through all this once, and anticipating doing it again, here are a couple thoughts you might consider doing for your own retirement/aging planning.
    1. Consider committing assets to a revocable trust, which can be made automatically irrevocable under a designated set of circumstances; say, that one or both of you die or pass a certain stage of dementia. This just sounds so cheery, I know, but there are advantages to this — in a revocable trust you can be your own trustee, whereas trusteeship can go to a designated manager (there are banks willing to do this) upon change in status. This allows you to retain control over your assets while you are able, but protects them from taxes and/or litigation or asset-seizing to pay for care or by con-men if you become unable to manage. It also makes paperwork at death or disability a minimum and protects your estate from probate.
    You can designate anything or anyone you want to benefit from the trust after your death, and can even put in clauses such as “upon my death x should be beneficiary of this trust, but upon x‘s death the trust should revert to…”, so you can exert more control over your estate than you can in a will. I have no idea if this matters to you or not, just be aware that you can do it. However, it may be more important to note that if your assets are protected in a trust, the state can’t seize them to pay for your care.
    2. Make sure that someone you trust, besides your spouse, also has medical power of attorney. It is all too possible for something to happen to both of you at once, and someone needs to be able to make medical decisions on your behalf. Better a trusted friend than someone you don’t know and who doesn’t know you.
    It’s legal hassle and expense now to set up, but better to do it when you are (relatively) healthy and unstressed than to have to worry about it when you already have a crisis going on, by which time it may be too late to do so anyway.

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