Wednesday, November 2, 2016

It's NaFaCaMo, Folks!



I'm actually a day late to inaugurate the National Family Caregivers Month series of blog posts that I plan on writing in November. My friend and fellow Family Caregiver, Sandra, likes to call it NaFaCaMo as a sort of twisted take on NaNoWriMo, when writers the world over write a novel over the thirty days of November. There might be some NaNoWriMo folks out there who are also celebrating NaFaCaMo, but let's call a spade a spade and admit that if you are doing both (writing a novel and being a family caregiver) -- well -- we don't believe you. Despite the fact that President Obama wrote a very nice proclamation for this significant month (you can read it here), and I'm basically a sucker for everything that man does, including being recognized as a full-time caregiver of a disabled family member, my interest on the old blog is to tell it like it is and is means uniquely slanted (biased) toward the dark-humored, the rueful, the cut through the inspirational crap about being a full-time caregiver.



In the dark days of the last century when the internets were just a kernel of rice in the brain of Al Gore, my friend Jody, whom I had met in a mothers' support group at New York Hospital in that other big shitty, turned me on to a newsletter for mothers of children with significant disabilities. It was called MOH, or Mothers From Hell, and it was a perfect antidote to the treacly Mothers From Holland that was de rigueur at the time.  







Don't get me wrong. There are a myriad of blessings that come with being a full-time caregiver, and I've written literally hundreds if not thousands of posts here that testify to what I say is the honor of caring for someone who is entirely dependent on me.  I can tell you about resilience and virtue and strength and a community of human beings that are, without doubt,  the most courageous people on the planet. A designated NaFaCaMo calls for some levity, though, because -- well -- just because. I've just come out of a particularly grueling couple of months with Sophie in a sort of perpetual crisis that culminated in a fairly useless hospital stay that cost nearly $70,000 (so far, and I'm not joking). It took her approximately three weeks to recover from that stay and whatever was going on before she was admitted -- three weeks of barely being able to walk, of losing weight, of near-constant seizures in the early hours before dawn, among other atrocities. I'm thrilled to say here that she's turned a corner and is back in school with a spring in her step. It seems that the combination of increased Onfi and a new version of CBD and THC is doing something good, at least for now. I don't want to jinx it, though, so let's not dwell on this perhaps temporary hiatus other than to give thanks. Thanks!




It's taking me longer and longer to recover from these downturns, though, and can I tell you that it's not really Sophie -- or her disabilities -- that takes its toll. It's what we call the systems of care -- or lack thereof -- and the culture in general that makes our lives so difficult, when they're difficult. 



Hopefully, I can touch on some of these issues over the next month. I'd also love for you, dear Readers, and especially you dear Caregiver Readers, to tell me your stories. I want to know what your personal record is for changing wet bedsheets in the middle of the night or the greatest number of calls you've made to your insurance company about a particular charge. I'd love to know what outfits you've worn to IEPs (I myself wear a leotard and do a tightrope walking act) or your methods of dealing with constipation. How about doctors who refuse to acknowledge the efficacy of CBD or who downplay side effects of anticonvulsants? How about commercials for pharmaceuticals and making a case for medical necessity when you have to renew prescriptions at the drug store? What's the longest you've gone without a full night's sleep -- months? Days? Years? How about the siblings? How resilient are they? Did they learn how to buckle themselves into a five-point harness before they knew how to walk? How do you deal with the phrases of the well-intended -- the I don't know how you do its? the God knew what he was doing when He gave you [insert the name of your child], the God never gives you more than you can handle, or my personal favorite There's a reason for everything, and your daughter must be teaching you so much.




Let's hear about the marriages and the divorces -- hell, let's hear about the affairs. You spend a lot of time at home! There are no judgements here during NaFaCaMo! If you're a woman have you turned your home into a convent or cloister? 




And, here's the golden question that I know you've been asked at least two million times:

Are you TAKING CARE OF YOURSELF?

22 comments:

  1. OK. Here's one of the helpful sheets the REM program, which routinely denies appropriate levels of nursing care, gave me upon intake:

    10 Tips for Family Caregivers

    1. Seek support from other caregivers. You are not alone!
    [Apparently I'm not allowed to seek support from other people]
    2. Take care of your own health so that you can be strong enough to take care of your loved one.
    [hahahahahahahaha. With what back-up caregiving services? Seriously?]
    3. Accept offers of help and suggest specific things people can do to help you.
    [Become an LPN so you can manage J-tube feedings and suction a tracheostomy?]
    4. Learn how to communicate effectively with doctors.
    [Actually, I find it easier to communicate with doctors than with social services case managers. At least doctors listen to me]
    5. Caregiving is hard work so take respite breaks often.
    [Hahahahahaha. Montgomery County just made my son ineligible for respite care because he receives overnight nursing care from the state]
    6. Watch out for signs of depression and don't delay getting professional help when you need it.
    [The State has a discount code for downloads of the Rolling Stones' "Mother's Little Helper."
    7. Be open to new technologies that can help you care for your loved one.
    [Except Medicaid won't pay for them, so good fucking luck affording them!]
    8. Organize medical information so it's up to date and easy to find.
    [Yeah, right]
    9. Make sure legal documents are in order.
    [Because the State will drive you to your grave, even dig it for you! Free services!]
    10. Give yourself credit for doing the best you can in one of the toughest jobs there is!
    [Um, shut the fuck up, assholes. I'm no little mommy, thanks.]

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    1. This comment needs its own post. Perhaps one for the blog this month?

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    2. Oh Lord what a spot on POST REPLY this one is, God Bless you for keeping it 100%. I actually responded to #6 when I saw Caregiver Burnout coming again and didn't wanna end up in Psyche Lockdown... they gave me a Handout on 10 best ways to relieve Caregiver Stress... we still laugh our asses off that high on The List was Yodeling! No, I can't make this shit up, it was a suggestion and the Therapist was offended when I laughed out loud thinking surely it was a Joke, right?! I never went back... what help could they possibly be when really the ONLY question they would respond to is the are you to the point that: 'do you want to end your life' one... and if you say Yes, well, MAYBE you will get Help, but it won't be REAL Help, because they cannot change your situation really now can they? Yeah, jaded about The Systems, but then I've been dealing with them so long I no longer have any Faith in them... Dawn... The Bohemian

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  2. Having never been a full-time caregiver to anyone with special needs I have nothing to offer here. I will say however, that the times in my life when I've been a care-giver to people in different medical situations, it's been amazingly draining in all aspects and that my family life and my own personal life have suffered greatly and thus, when I say, "I don't know how you do it," I really don't. I guess the answer is partially, at least, "Constantly and the best I can." Or at least, that's what I have observed. And I'm in fucking awe of all of you.
    That was helpful, right?

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    1. Your blog has sustained me over the years -- going there each morning and evening has been a ritual that takes me to another world where I can cry and learn and laugh and wonder. So, thank you for that and all your wise and encouraging comments over the years. You are the ultimate caregiver, Mary --

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  3. I'm struck silent. The only caregiving I've done is of my parents with Alzheimer's and multiple friends with cancers. Certainly nothing that went on for 20+ years and without help. Sometimes I want you (not just you but people in your position) to tell me what you need and what to say because I want to be supportive so much. Just I love you? Nothing I say is meant to hurt or annoy? I know this is not what you are looking for here but I'm glad I got a chance to say this.

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    1. Thank you, Joanne, for your sweet reply. You are always so loving and supportive, and that goes far! I actually do have help and am quite fortunate in that regard!

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  4. Here, bearing witness. I have nothing useful to offer, but I am here, in love and awe.

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  5. No, there was nothing left to take care of myself when I was giving my all to caretaking. And I was coming up shotgun in the caretaking part too. My best was not good enough. I was close enough to see what good enough was but couldn't get there. If it were no where in sight, I' might have pulled back knowing that I wasn't going to get there. But, I fell short on everything. Wasn't good enough.

    A little bit more consistent reliable caretaking from someone else would have made all the diffeternce. Like 4 hours a day 4 days a week including some weekends. Didn't happen. Couldn't afford it. Couldn't find it

    When my MIL came to live with us, that she could afford to pay for some caretaking, 4-6 days a week, depending on what was going on, made her care so much easier. I could still have a life despite being primary caretaker. Having the funds and finding competent trustworthy help can really make the difference. During the acute episodes, that does all go out the window, as there is no respite from dealing with a loved one whose life hangs on a delicate balance, but for those who need constant care but are stable, having some someone to give you time off allows for the caretaker to have a life outside of care giving

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    1. AMEN Sista! I need to clearly win the Lottery to afford what The System will never provide to those of us unable to Pony Up!... Dawn... The Bohemian

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    2. Rebecca -- I haven't written much of the relentless guilt and inadequacy we caregivers often have - - Thank youfor your honesty.

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  6. I just finished a "caregiver study" with the NIH for Max's type of metabolic disease. I had to fill out two, hour long online surveys, and a 90 minute phone interview asking the same questions in slightly different ways. At the end the dear young student asked me what was the hardest thing about being a caregiver to Max. I stifled my snark about answering thousands of stupid questions through the years. I told her, honestly, caring for my dying mom last year was harder than anything I've ever endured for Max. And I was wondering why it's just now starting to show up on the radar of folks in research labs that we - the caregivers - should be studied. Why is that?

    I've not been at this job as long as you have, but 13 years is nothing to shake a stick at. I wonder sometimes, would my hair be as grey? Would I always feel so tired? Would I go out for dinner and drinks with friends? Would I have regular dates with my husband? Would I have a career that wasn't changing my 13 year old man-boy's diaper? Probably, maybe, who knows?

    Sure, it's all incredibly hard. And it's all incredibly tiring. But do you want to know what I do every time I am feeling especially down? I come to your page, and I click to watch your video. And I remember...he's always going to be my perfect baby. Every time.

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    1. Deana, You are one of the people whom I feel so close to after all these years of sharing our lives with our kids. And your expressions in the video have a place in my heart.

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  7. I hate to trivialize your post, but I have been distracted by these FABULOUS book covers. I love the fact that "Nurse in Holland" was originally titled "Amazon in an Apron." How that could even be the same book, I'm not sure. And that "Jet Set Nurse" cover is truly terrific. Carnival in Rio, baby!

    Anyway, I know that's not really what you're blogging about here, but my experiences with long-term caregiving have been limited. I helped care for my father at the very end, sitting up with him a few nights in the hospital, and even that was grueling. Doing it day in and day out, well, I'm in awe of that. (Which is probably a cliche in itself.)

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    1. I am SO GLAD that you noticed them, Steve, because I adore them, too -- especially the sub-titles!

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  8. OMG as I sit here at 3:54 in the morning reading this I'm LMAO and I so NEEDED that so I'll be back all month long to Celebrate this Month of recognition coz I'm a Sucka for getting any too! *winks* My Mom just died last Thursday but being a Full time Caregiver of a disabled Spouse and two Special Needs Grandkids that I finally just adopted because, hell, it's not like they were going anywhere else... I am having trouble finding TIME to Grieve. I hear there is a process and stages of Grief, Caregivers really aren't given the Luxury of having any processes of normal life functions tho' so screw it, gotta just get thru it, and some levity will certainly help! So I Love your Blog since you cut thru the B.S. and frankly when I meet a Caregiver who pretends the sanctimonious crap isn't B.S. I wanna knock their Halo off their head... is that Unchristian of me I Wonder and am I going to Hell for wanting to knock the Halos off those who clearly are more Saintly than myself? Humnnnnn... dunno? I try to wear outrageous clothing to the G-Kid Force's IEP's since I have to attend two per year at least and it's kinda like going reluctantly to the Principal's Office yourself. Tho' I must say The Young Prince's High School one was the FIRST EVER {and he's a Junior this year} Positive one! WTF? I wasn't prepared for such a Miracle to Manifest... I fairly floated out of the freakin' room! Yeah, he's still failing everything, but at least we didn't have to act like Defensive Linemen in a Super Bowl where we were clearly the underdogs for once, relief! How long without sufficient Rest or Respite? Well, I'm here now at 4:03 am so that should speak volumes... since the Kiddos have to be up at 5:00 am to ready for School... well, if they're Well enough that is, which one hasn't been. And as for The System, well, The Systems of Care for the VA Disabled Veterans of America... Mental Health Systems... Medical Systems for Chronically Ill Children... Elderly... Social Services... Kinship Placements... Adoption Courts... Inadequate and Inept Insurances... ad nauseum I've dealt with over the past few decades... having raised two generations of Special Needs Kids and having a disabled Veteran Spouse, well... they are the bane of my existence and as you say, the primary cause of STRESS in ample doses! So let's celebrate shall we... I need a Good Party and a Drink... Blessings from the Arizona Desert... Dawn... The Bohemian

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    1. Thanks, as always, for your support Bohemian! You need a blog of your own!

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    2. I have one... my LIFELINE it is in fact! Come by for a Bloggy Visit any time, I get so much from yours, you have no idea!!! What a Great Community this Land Of Blog is! The Grandson actually Created my Blog for me when he was about 9, I didn't even know what a Blog was, so Tech Challenged I am. Tho' SMI he is a Genius, and my I.T. Go To Guy to be brought into this Century when it comes to Technology. *Smiles* Dawn... The Bohemian

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  9. Well, I'm reading this after a few days of phone calls with physicians, insurance companies and state agencies desperately trying to find solutions for my mother's husband. Alzheimer's is taking my mom farther faster than we thought (although it has been about five years, now, so maybe the trajectory has just gotten a little steeper than before), and if he doesn't get some help, he's going to have another (fourth) heart attack. Here's what I learned from the state - their Medicare doesn't cover home health/respite unless it's rehabilitative, so that's useless because she isn't going to get better. However, they do have something called a Family Caregiver Support Program which will reimburse the caregiver for costs they incur getting respite care. I was so thrilled. And then she told me the yearly max amount for reimbursement is $400. For a year. Of respite. HA! Then they asked if Medicaid might be an option, but since the rule states that, were my mother single, she has to have assets less than $2000 TOTAL in order to qualify, and if she's married (she is), their total assets have to either be depleted by 50% or they have to total less than $100K, that means they would have to basically sell their house and liquidate most of their retirement income in order to qualify and what the fuck is he going to live on at that point? The local facilities that provide 24 hour care cost between $6K and $7K a month and even then, there are some things that are extra (if she needs help toileting or eating, for example). I was asked to get a power of attorney in order to talk to her doctor and her insurance company and, while everyone agrees that it's frustrating, there is nothing anyone can do in the short term to support her husband while he takes care of literally everything my mom needs by himself because I live a state away and can't get there as often as I need to. For reference, my mom's mom lived with Alzheimer's for nearly 20 years and drained my grandfather of every penny they had saved. Why can't our systems be set up to provide care like our tax code is set up to shelter billionaires? Oh, yeah, because money is more important than people. Ugh.

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    1. As always, your comment cuts right to the chase and resonates with me. Good luck with those many layers of absurdity and tragedy.

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    2. I wept when I read this entry... yes, money is more important than people in the eyes of The System and that indeed is both absurd and tragic beyond belief! Big Virtual Hug... Dawn... The Bohemian

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  10. Sorry for the delay in replying...
    I guess it's not unusual that this post really resonates with me.
    As a long time caregiver, for me it's the loneliness. It is as if each hospital hardship seems to float me further and further away from the folks who surround me in my life. I have so much less in common with my core companions. And no matter how much they want to help, or support, or how many other special needs parents I connect with, there is still this overwhelming sense of "going it alone" of feeling very isolated and apart. It's like being in solitary confinement. No one knows what goes on inside my 4 walls but the longer I stay here, the less I am able to acclimate back into the mainstream. It's not so much that caring for another is a prison, it is just that as you know, often you MUST perform these hardships by yourself. And even though I consider myself to be fiercely independent, and rebellious against the absurd; I'm getting very tired of this perpetual state of PTSD. Thank you dear friend for the opportunity to vent. xo

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