“It has been my philosophy of life that difficulties vanish when faced boldly” ~Isaac Asimov
I am assuming for a moment that the majority of my readers are primary caretakers of at least one severely disabled child. I know there are others … but this post is mostly for you.
What happens if suddenly you disappear? You’re hospitalized, called to the bed side of a beloved out of town parent, sent to some bizarre war in a far away corner of the world? What if, god forbid, you suddenly and unexpectedly die?
My point is, do others know everything necessary for your child? Does your spouse know how to make all the meds, when to give them, how to give them? Can the other children spot a seizure coming on? Does someone know what the ducky lips look means? Who knows how to hold her or him in that special way that helps mitigate a seizure? What position s/he falls asleep in the best? Can your partner instantly handle all the children, normal and not so, by his or her self? Is there a babysitter or nanny that can? How much is written down? Where are the diaper wipe refill thingys and how do they go in that box? What do some of her sounds mean or that look in her eyes?
Eight days ago I woke up and was walking into Pearlsky’s room to wake her up. Somewhere between my bed and hers, I ruptured L4-5, a lower spine disc. I was doing absolutely nothing other than walking from one room to another. By some miracle, I got her dressed and in her chair, I text’d her school aide who was able to come and help with meds and the rest, and she went to school. I have been bedridden since, lots of Percocets and ice. Yesterday’s MRI was not good. “Oh, that’s the most painful type of rupture” from the chief of a very well renown spine center. Thanks, doc.
I have had minimal interaction with Pearlsky, and the Vicoin isn’t doing that much either. I miss feeding her, being with her, all of our interactions. Friends are trying to help, but no one knows her like I do. I find myself shouting from my bedroom “that sound means she is probably thirsty.” Thank god for nanny cams, too. Her nanny has been great working extra hours, others trying to learn to feed her or use the lifts on the fly (so to speak). Wonderful calls from friends around town and those who love us from around the country are super and helpful, but alas, it is those “on the ground” that need to know what to do.
You know me, I am NOT looking for sympathy, etc. I just want to know, how are you prepared?
I am told that after a couple of weeks I will be fully healed. What’s a bit of intense pain between friends?
(special thanks to Lauren, Brenda, Kelly, Mary, Miriam, Anna, Yelena, Sandi, Kate and Jim, few of who even know this blog exists! and others whom I will remember when the drugs wear off.)
Though my son is not as physically disabled as your daughter, I still find that even my husband doesn’t really know the best way to give him his meds, or the schedule, or how to adjust it based on changes in schedule and his behavior. I try to write down everything and update it- I have a Word Doc I can keep going back to and print out. It also has what to give him and dosages for over-the-counter meds like Tylenol, as well as the names, addresses, phone numbers and disciplines of his school and all his therapists and doctors. And I still worry like crazy, because nobody knows him like I do. When I had my most recent baby and was in the hospital for two days, I was convinced it would all fall apart. It didn’t, but not everything went right either.
My friend with a son with autism and a severe seizure disorder regularly worries, because her husband isn’t capable of taking over even for a day. She’s training up her oldest kid, who’s twelve. He’s apparently showing promise.
Forgot to wish you a refuah sheleimah. And to salute a fellow Asimov fan.
A detailed diary – mentioned by staying afloat – sounds like a worthy idea. Thing is, not only you suffer, Pearlsky does too. Is ‘suffer’ too strong for what she experiences when you are not giving her care? This doesn’t answer your question about what might happen if you die, but in this temporary trial, perhaps you can hope that no long term harm will occur.
Best wishes for a speedy recovery.
With all the technology available, perhaps a video-blog of your daily routines with her “just in case” someone needs them as a reference?
And, needless to say, ALL parents feel that way. Nobody knows what my 15 year old’s excessively bitchy response means today in relation to yesterday’s shrug….or how many Advil she gets when she gets a really bad headache. I know the magnitude isn’t the same but when I travel for work I document EVERYTHING that she could need…but maybe it’s just me…:)
If I died tomorrow, my husband would be fucked. That’s what I think on most days, but I comfort myself that since I’d be dead, it wouldn’t matter, at least to me (barring my tortured spirit remains tethered to the earth…).
In all seriousness, I’m so, so sorry. I’m glad that you have some support, although it doesn’t sound like nearly enough. In answer to your question, though, I have made a living document for and about Sophie that addresses all those things that you mentioned. The only trouble is that I need to update it more often.
Get better soon. I’m hoping you live forever.
Not prepared, the post scared me, and I think “well, at least there is the husband”.
Then I saw Elizabeth’s comment – and ditto about the husband!
I think some preparations can be made but others can’t, it needs time and real experience for someone to learn all the details and recognize all the sounds, expressions etc. However, I think people do muddle through *most* of the time.
Securing a safe, welcoming place for my son to live in the future, with people who care about him, caring for him, is the biggest and the most difficult work we have in front of us. I don’t even know where to start.
Hope your are up and about soon and back with Pearlsky (I’d be lost not doing all the things I usually do with and for Dimitri – I guess we are interdependent?)
I’m sorry about your back. And this IS a scary post! I’m lucky though. Hubby knows the drill since he actually started care before I did ’cause I worked at first. It would kill him though…quite literally…he’s half way there already. We have a completely detailed list of “Sophie’s life” with the wills…but, let’s face it…if we both popped, kid would be in a “long term care facility” and I know, in the end, what that means.
Anytime you are responsible for others, you should have back up plans, because things can happen to you. In some ways, having a person who is so dependent on you and needing special instructions is an advantage, because you know that it is critical to have the information and plan in place. Many parents just “wing” it, when they have the usual type of family, and just hope that the neighbors,friends, community, family can pitch in and cover. Not so with a special needs situation, because there is so much info that needs to be understood and done that you can’t just leave notes, or let someone fly by the seat of the pants, if you don’t want some mistake with grave consequences to occur. Just things like you don’t need to worry about bedsores with most kids and folks. It’s not a item most parents have on their kid care list. But if you have a dependent who is wheelchair/bed bound, it is a very important issue. Also procedures on how to move someone who is disabled and needs special movement, methods and equipment means you can’t safely have someone walk in on the fly.
Since you recently went away for a while and had to leave your D’s care up to others, you do have procedures and people to tap.. So all of us should have. The difficult thing when you are responsible for others, is to provide for them if they so need it if you should die, become disabled or unavailable.
One of the issues of having a disabled person at home, is what does happen when you are indisposed. The whole reason most of us have that person at home is because we feel we can give that person a much better quality of life than what s/he can get if put in another place under others’ care. Money, willingness to care for the individual, ability to care for the individual all play important roles in such decisions. I know you have mentioned a son who is a home, where you feel he is not getting as good of a life quality as his sister which is why you are keeping Pearl with you. The upside for your son, is that there may not be a drastic change in life if and when his mother should die, become disabled, leave. Much of Pearl’s life revolves around you being there as her primary caretaker, and when you leave that position, it can mean a big change for her.
I am sorry about your back. That seems to be a common issue with caregivers. That is one of the reasons that the horrible Ashley treatment is mentioned. My friend with a disabled son is having this problem now as her son has hit puberty and is clearly going to be a large person. She is having issues with his size and weight already. My mil is 1 1/2 times my weight, so I have to be careful about how I move her physically, and if she should ever slip, I have to keep in consideration that if I am seriously injured trying to help her, I could be rendered useless and needy regarding a lot of my responsibilities. Not a good situation, but a risk that just has to be there.
I hope your back gets better soon.
I’ve been lurking for a while now, and while my son is not severly disabled, he is blind and dependent on hormone replacement therapy. I worry the same thing, what would happen if something happened to me? His dad is capable, but he often forgets to give him his meds which could lead to seizures. And if something happened to both of us, well I shudder to think about it. I hope that you are able to recover soon as it must be awful knowing that you can’t be the one to take care of her.
I didn’t mean to scare too many people! It has been a real eye opening two weeks or so. In this post I showed the primary document that is on Pearlsky’s chair (in a luggage tag thing) and hanging in her kitchen. My point is that “life support” is handled … something happens to me, that paper and potentially a nanny or the hospital, Pearlsky will be safe and properly medicated.
The tough part is the subtle stuff. How do I document how I know a seizure is coming, when quiet honestly, I don’t always know how I know. How do I document the look in her eyes when she is in pain, the sound that leads me to believe she is thirsty? The way I hold her when giving her a medicine she dislikes vs. one she likes? How and where to tickle her when she is waking up from a nap and I know she is hungry and if I don’t tickle her the right way, she will degrade into a seizure. And these things change …
Maybe I’ll just, from this moment on, be healthy and live forever. Or at least a day longer than she does.
By the way, thanks for the good wishes, the pain is down to manageable, and I don’t still hate the whole world. Just the English speaking part. 😉
When I was a teacher I had a detailed description of my day that I gave to substitutes. I kept it saved on my computer and updated it frequently.
I have a similar thing for Charlie and also a typed medical history and a list of doctors. If I die, then I’m not sure if they’d find it, but otherwise, at the very least I have a jumping off point if I were to need help.
For the subtle thing, I think my husband would do OK. If you’ve got no spouse then I’d go as far as videoing the important stuff–but I’m a little anal about schedules and how-to’s.
On your comment, SD, I thought… Pearlskey will teach the next caregiver. Just like she taught you. I guess the key is to find someone who truly cares to be willing to be the assigned person to take over. That would be as much as one could control from the grave, eh?
I just saw this webpage on Facebook and thought you’d be interested in it: http://www.foreveryourfather.com/
Really hoping things are ok, thinking of you and Pearsly.
*shudder*
wishing you a refua that is very very much shlaima – and wincing in sympathy.
The Man and i have this conversation every 6-8 months or so, because I might catch a virus, my back seizes up, or I just have a migraine that’s not responding to the medication, and can he come home from work early? Each time, we have the same bitter conversation about why he has to take off work, why there aren’t alternatives to a parent taking care of our kids, and why did we set ourselves up for a situation that is so astonishingly high-maintenance?
answer: why would anyone does this on purpose? good grief.
And yet, it’s part of what makes our family fragile – the risk of not having backup is enormous. And yes, I’m with Elizabeth. But possibly also: vice versa.