Thus Spake Zuska

The whole month of October has gone by, and none of the things I promised myself I would finally get around to writing about this month have appeared on my blog. They haven’t even made it out of my cranium into rough draft form on my computer. I didn’t even manage to get a post up exhorting you all to open your wallets for the good cause of DonorsChoose 2009 Social Media Challenge (though there’s still one day left should you be so inspired!) I managed somehow to get my giving page set up (and a few of you stumbled across it and donated, with absolutely no help from me – bless your hearts!)

If I could use one word to describe my blogging over the last year or so, it would be “inconsistent”. Inconsistent in frequency, topic, quality, and sense of direction or purpose. I start out with a good idea, like blogging my way through The Gender Knot (which, by the way, I still intend to pick back up and work on again) and then am not able to continue.

Part of this bloggus interruptus is due, of course, to the migraines, but increasingly it is due to the sapping of my resources – time, emotional and mental energy – that comes from attending so closely on a daily basis to my mother’s financial and health care issues. I’ve thought for a long time of trying to describe what this is like, but of course doing so takes time and concentration and focus that I don’t normally have, because my time and emotional/mental/physical energy is drained through daily struggles with seemingly endless, always tedious, mind-numbingly little, stupid details. Any one of the things I have to do is small and takes not much time. But they all add up over time, and each little struggle carries with it its own special humiliations and defeats. Here I’m going to try and describe a little of what goes on in the mind of someone charged with managing the care of an elderly person.


There are the constant worries about mom’s health and condition at the assisted living home. Is her pain managed adequately? What if she falls again? Is she getting enough to eat? Is she happy? What do I need to do to make sure she gets a flu shot? Can I reschedule the appointment with Dr. A for around the same time as the one with Dr. B so that I can take her to both of them in one trip home? Just how many phone calls will it take to get this appointment for a pain shot with clinic C scheduled? (Answer: approximately 50 or more, plus emails, over a period of a month and a half.)

I have a relative who often remarks on the similarities between elder and child care. This relative thinks that we regress to a child-like state as we age, and that there are some positive things about that – we find joy and wonder in things again as we did when we were children. She thinks there are other similarities – the need for regularity and naps, and being easily distractible, among them. Earlier this year I had lunch with a good friend who has children, and we, too, talked about the similarities and differences between providing elder care and child care. The similarities seem to be that in both cases, the person you are providing care for is always on your mind – you are always worrying about them, thinking of their welfare, even when you are not around them, even when you are off doing something else. But one of the main differences, it seems to me, is this. In caring for children, there is a lot of positive reinforcement and reward along with the worries that burdensome task brings, and those positive aspects are rather public.

You take your children out in public, people ooh and ah over the little ones. You take your elderly parent out and most people don’t even realize that it is in many ways just as complicated and exhaustive an outing, requiring just as much planning, as taking a small child or infant. There is at least a rhetoric in society about how valuable parenting is, even if social policies don’t always match up to the ideals of that rhetoric, so a person responsible for childcare can draw on that rhetoric to remind him or herself of the value of the important work they are doing. And the work is directed at such a positive goal in and of itself – bringing up the next generation! Raising the future of our society! Shaping the minds of tomorrow’s leaders! And so on and so on.

Elder care is done, for the most part, off to the side and in the shadows. There is no pervasive rhetoric, in American society, of the value of time spent with the elderly. To the contrary, age is a disease, and to be shunned. People with children may gather in groups and forums to trade happy stories of the clever escapades of their children, but who ever heard of sharing heartwarming stories of mom or dad’s latest memory mixup? Remember that amazing time when your young one grabbed the spoon and fed herself for the first time? You couldn’t wait to tell everyone, right? Well, who do you go talk to about the first time you had to cut up the meat on your parent’s plate in the restaurant because he or she was too weak to do it for themselves? “This knife is so dull,” they might have said, “I just can’t cut with it.” “Here, let me try,” you might have gently replied, and then after that, you might have started offering to cut the meat for them, hesitantly at first, and then it just became routine. “I’m so proud!” you want to tell your friends, “I can cut mom’s meat in the restaurant like it’s the most normal thing in the world; tears don’t even well up in my eyes now!”

Maybe you’re watching t.v., and one night, you’re just sick to death of all the commercials extolling the virtues of this or that diaper for the cute as a button babies crawling around. You know those babies are going to poop and pee in those diapers and there we are talking about it right on national tv! Because it’s cute! And when was the last time you saw a commercial for incontinence briefs? Not so cute. Maybe you get together with your momma-friends and trade info about the best brand of disposable diapers for Junior’s comfort, but who do you talk to about how the disposable briefs irritate the equally, if not more so, tender flesh of an older person? We celebrate the time when our children move from the potty-training stage to really and truly using the toilet consistently but nobody talks about how to help someone manage the griefs associated with giving up using your own underwear, or becoming dependent on a bedside toilet chair, or not even being able to reach your bedside toilet chair in time.

The difficulties of raising children are balanced by the joys and the knowledge that they will grow up and move out and go on to lives of their own, and you get to watch all of that. (If you are lucky. I know not all children get to grow up. And I know it’s not all easy and straightforward.) These future fantasies are something we like to speculate about and look forward to. But the difficulties of elder care come with the grim knowledge that they will eventually end when death takes the beloved elder from you. When the mind moves toward that, usually a door just slams shut, except on the really dark days, when one thinks, okay, I’m tired of all this, so tired of dealing with everything, where is the dignity,…and of all the things we don’t talk about relating to elder care, these sorts of thoughts are buried way down in the deepest and darkest, under a deep blotch of shame.

With all that I feel and have described here, I keep in mind that I am not providing daily care for my mother’s physical needs. I have a relative who is struggling to do this for two elderly parents, one who is beginning to show signs of dementia, the other who has many illnesses and is very frail – and she works full time while trying to provide this care. I don’t know how she copes, and don’t know how much longer she can keep doing it. There are so many more like her out there in our society.

Moms have the mommy blogs; one nice place to start is The New Old Age Blog, which my friend PalMD told me about some time back. Let me know if you have other resources you think are good. I could use them, and I’m sure others could, too.

Comments

  1. #1 becca
    October 30, 2009

    Another very moving post.
    I think you’ve done an impressive job describing this. Evenso, it’s not something I can claim to completely understand, but the comparison/contrast with childcare does bring it into clearer focus. One thing I couldn’t have understood before the kid was the constant worries. And given how much I worry about any sick family member, I can only imagine what happens when you combine “responsible for another person’s wellbeing” worrying with the worrying about their health (that is mostly out of your control).

    Most of the positive points you point out about childcare I could quibble with*, but there’s one thing that I think really is enormously better than you pointed out- you do get a lot of positive support from other people with childcare. Nobody throws you ‘elder care’ showers (the very notion sounds bizarre to me). There’s so much child care talk (including the infamous unsolicited advice) that even though I do think of it as a bit ‘off to the side’ (I never noticed most of it before becoming a parent), it’s certainly not ‘in the shadows’. I suspect nobody feels like they’ve been inducted into a sacred cult of eldercare- an underground network of people who have also been through this who would help you out. Maybe blogs could do such a thing, a little bit. I hope so.

    (* I can’t help pointing this one out: on the rare occasions I meet other mommies, we don’t talk about which diapers are best for Junior’s comfort- we talk about all the places the poop gets no matter which diaper you use. I honestly don’t think most of us would care if a diaper literally bit little Junior’s behind if it never leaked and we didn’t have to hear the crying. Or maybe I’m just evil.)

  2. #2 Eleni
    October 30, 2009

    Thanks for writing this. My mother in law is dealing with a lot of Elder Care issues. I think you are correct. We have a whole mommy blogger/ tweeter network but no elder network. It might be nice. Seems almost odd in these times when the baby boomers are getting older.

  3. #3 SciWo
    October 30, 2009

    Great post, Z. The more I think about it, the less I like the analogy between childcare and eldercare. I also worry about those people who are getting sandwiched into doing both at once. For example, my mom is having more surgery in December and will probably move in with us for most of the winter/spring. She’ll be largely immobile for the first six weeks – leaving me care for both her and my not-quite-three year old daughter. But the way I care for the two of them will be very, very different.

  4. #4 Anna K.
    October 30, 2009

    A great, touching and thought-provoking post dealing with something that is very common, but not much discussed.
    We are so afraid of dealing with aging, dying and death and in this society — being elderly and frail and dying is seen as a failure in some senses, which is too bad because it can be seen in other ways. We celebrate one half of the cycle of life (the young), and devalue the old. When elders aren’t valued it means that the work of taking care of them is devalued as well.

    I took care of an elderly relative for some years; I also had young kids at the same time.

    fwiw, here is why I am glad I did it: there is such a thing as aging with dignity and a good death, even though we don’t talk about such things. I think the time I spent in caregiving duties contributed to allowing this relative to have that old age with dignity, and I draw satisfaction from that. But not much else. Caregiving is really lonely work, and financially, mentally and emotionally it costs rather than pays. Which is probably why so many women get to do it, eh?

    You’re the second person I’ve run across talking about ‘The Gender Knot.’ Sounds like I’ll have to read it, though frankly I often feel I’ve lived it! :-P

  5. #5 Lora
    October 31, 2009

    Some of the feminist ladies I went to college with no longer participate actively in any feminist organizations for sorta-kinda this reason: They took on elder care responsibilities, and needed similar flexible schedules, time off, etc. as the mommies, but always found that they were instead the ones asked to work overtime, pick up extra work, so the mommies could pick up Junior from daycare and see Junior’s school play. Yet when they needed a helping hand with time off to investigate nursing homes, help Mom & Dad with financial issues, all the elder care stuff, the mommies were unwilling to reciprocate. The feminist groups were more than happy to go to bat for breast-feeding rooms and maternity leave and flex time for mommies, but when it was pointed out that flex time and family leave time were things that everyone should be able to use for many purposes (such as elder care), suddenly the response was, “Well, we are focusing on supporting mothers in this campaign, and we don’t want to lose our focus. Maybe we could do a different campaign for elder care…some other time…”

    And yet often I think there is a lot less “choice” in whether or not we will care for elderly parents than there is in whether or not we have children: If you’re the daughter with grown kids, or the daughter without kids, congratulations, you’ll be installing grip-bars in the shower for Mom someday, whether you want to or not. There’s definitely antipathy between the siblings who are too busy with their own children to assist in the care burden vs. the siblings who are doing the majority of the elder care. There’s definitely a lot of, “Gee, I’d love to take Mom to the orthopedic surgeon to have her broken hip checked, but, ummmm, Junior wants to see the latest Disney Whatever, and I promised we’d go at 8:00 am…” And you’re not allowed to snap, “Well, can’t Junior see the afternoon matinee? I really need help with this” because the childcare excuse was being used as a trump card to get out of the less-fun elder care work.

    I wonder, do elder parents who have only sons end up being cared for by their sons? Or does this fall on the daughter-in-law? My own husband does a lot of the care for his very sickly and elderly father, but I notice he leaves more of it to professionals (visiting nurses, nursing homes, hospitals) than I see women doing–it seems like women try to keep at it themselves for longer than men do, are less willing to admit they cannot do this type of care. And we notice that even though the nursing staff and medical personnel have been told that my husband is the health care proxy, nevertheless they still phone his mentally ill wife first, then call us only after they have determined that the wife is not able to make decisions. The assumption is that only women can do this work.

  6. #6 Margaret Flowers
    October 31, 2009

    I am so impressed with your ability to put your feelings into words as you have. Maybe you should have been a journalist. I am a nurse at a local hospice and have seen so much during this time. Two elderly parents enrolled in hospice at the same time…..two elderly parents who die within a month of each other with only one child to handle the “grief” of both…..Elderly person with Alzheimer’s whose elderly spouse is dying of cancer…….I was so lucky to have my 92 year old motherly exit the world with no diapers and full ability to care for herself. Only the shock of MSU beating OSU caused her demise in her chair in front of the TV. God bless you on your journey, and in the end, you will be able to live with yourself because of the love you have shown.

  7. #7 Comrade PhysioProf
    October 31, 2009

    Very moving post, Z. Your mom is extremely lucky to have such a wonderful daughter.

  8. #8 PeggyL
    November 1, 2009

    Thanks for reminding us what many of us will be dealing with sooner or later – if not a parent, then a spouse, partner, sibling, friend…

  9. #9 sandy
    November 2, 2009

    Thank you for these thoughts. I am headed down this road myself.

  10. #10 ScientistMother
    November 3, 2009

    A very moving post Zuska.
    When I first began reading this post, I immediately thought comparing elder care to child care is not possible. It is akin to comparing apples to oranges, yes they have some similarities but they are vastly different endeavors. As you said, raising a child is an infinitely more positive experience as you are in a forward motion, progressing in development, assisting a wee one to gain independence. With elder care, it is a much more negative experience. The emotional challenges on losing ones independence, strength and agility is not easy. The tantrums are not because a little one can not figure it out, it is because our (grand)parent(s) can no longer figure it out. How do I tell my grandfather he can no longer have his night cap due to interactions with medication? It is in no way comparable to what happens when I tell my little monkey No. To try and compare childcare to elder care is a dis-service to those who struggle with caring for elders. The experiences, challenges are just so different. It is hard for different reasons. It is frustrating for different reasons.

    Thank you for talking about this. I often do not know how to describe the emotions I and my husband face when caring for his grandfather.

  11. #11 Carrie
    November 3, 2009

    Zuska,

    There is a local writer who posts often about his visits with his dad. http://www.ilind.net . You might get some support from him.

  12. #12 Hope
    November 4, 2009

    I’m surprised by the comments that take issue with the comparison of elder care to child care. Of course, they’re not exactly the same thing, but “apples to oranges” isn’t right, either. As someone who’s had to recently take on the responsibility of making life and health care decisions for an older adult, I think that the biggest similarity is in the caretaker’s I-know-best attitude. With a young child, the parent will often make decisions that the child does not understand and does not agree with. In this situation, a responsible adult should not cave in to the wishes of the child. Someone caring for an older adult can find themselves in the same position and must have the fortitude to talk the elder into what’s truly best for them. (And often there is the added sadness that this person was once a force to be reckoned with….)

  13. #13 katydid13
    November 9, 2009

    I agree with Hope. While easy might not be the right word, there is a degree of certainty in telling a small child she may not use sharp knives, have matches, drive a car, keep track of her own money, and make her own medical decisions. You can resort to saying “because I’m the mommy, that’s why.”

    I don’t think it’s always as clear when an elderly person shouldn’t use sharp knives, drive a car, keep track of her own money and make medical decisions.

    Deciding to stop treatment and focus on pallative car or pushing on with the newest most experimental thing is not as clear cut as making your toddler get her shots. While some parents might have objections to vacinations, I don’t think there are many parents not getting their kids vacinated because their two year old said “no!”

    Because “I said so, that’s why,” doesn’t work as well from child to parent, even when the parent has declined.

    I’d like to think that allowing people to use flexibilities for elder care are becoming more common. It’s become almost a rite of passage among my friends to go home and spend some time “babysitting” dad after some kind of cardiac incident. Of course, with my laptop and a phone, it was pretty easy to glare at my father when he made noises about gutters and leaves and do my work at the same time.

    (Yes, my father did indeed make noises about getting up on a ladder to clean out the gutters when he was still too weak to lift a gallon of milk, confirming my mother’s judgement that he should not be left alone.)

  14. #14 Taphophile
    November 10, 2009

    Thank you. Your post is moving, honest, and speaks for all of us caring for a parent. I have been wanting to write about the issue for a while but have been concerned that I will sound ungrateful and whiny. Your piece is neither.

    When my father died 19mos ago and I assumed responsibility for my disabled mother’s care in their home, I described it as like having a new baby – a role for which I felt unprepared and which was not accompanied by maternity leave, positive social reinforcement or gifts. And I can’t look forward to the outcome of this caring responsibility.

    Thank you again.

  15. #15 Kurt
    November 30, 2009

    I am very new to this site, and to your blog, but I must say, you seem to have hit the situation right on the nose. I was very moved by your post and felt compelled to respond to it.

    The only other major difference I would add, is when the necessity calls to change that diaper or incontinence brief, dress them, bath them, lift, adjust, or even sometimes carry an elderly person, it is much more difficult to handle and control an elderly adult, who is frequently far overweight from prolonged inactivity, then it would be to handle an infant, toddler, or even a tween.

    It is for all of these reasons that I was forced register my mother with an adult day care facility, which thankfully provided much needed day-time respite from the constantly grueling monotony of providing 100% of her care. It didn’t take long though for me to uncover the quagmire of problems plaguing that industry and the need to make drastic improvements- and fast.

    Now it is my life’s calling. I have devoted all of my time, effort and resources into revolutionizing the adult day care industry (also now commonly referred to as adult day services). I am hoping that The Golden Years Adult Day Center will not only provide many caregivers like us with the needed respite and peace of mind we so badly deserve, but will also provide the highest quality day environment imaginable so that families will be able to stay together longer, and so that intermediate care, nursing home care, and assisted living care won’t be necessary until the most advanced stages of any elder’s declining health.

    Best of luck to you and your readers. it is my sincerest hope that in the very near future, my new benchmark facilities will branch out across the nation and provide what each of us so desperately needs.

    God Bless!
    Kurt

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