“Love is composed of a single soul inhabiting two bodies.” ~Aristotle
I received an email the other day from a new reader of this blog. With her permission, I am reproducing it here, with my answers / responses interspersed. Please, feel free to add your input in the comments.
Thank you so much for your blog-I appreciate your honesty and the way you advocate for Pearlsky. It’s nice to hear someone articulate so many of the things I think but don’t want to articulate to anyone around me because they’d probably freak out.
That is preciesly why I keep the blog anonymous. There is so much that we are all afraid to say.
I have a 14 year old son with complex medical needs-he has a very rare progressive neurological disease with a “?” at the end of it.
That in its own right is difficult. The not knowing is always the scariest I think.
First off, I’m so sorry for the prejudice you encounter as a dad caring for his daughter. Argh. Even as a mom, I don’t advertise that I let my son sleep with me when he is having a lot of pain or seizures because people just don’t have a clue.
I appreciate the thoughts. I do not tell people that I bathe Pearlsky, I either avoid the subject or just lie. I miss that I cannot lie down with her and cuddle anymore, but I won’t even mention that on my blog.
I don’t want to ramble on and on about myself, but I do have a question about something that scares me. As a single parent, what do you do if you get sick? Like, a horrible flu with a fever that makes you black out with when you try to get out of bed or something? Do you know what other people do in similar situations do?
My son needs medical intervention that schools and community programs won’t touch (7 injections a day for brittle diabetes, seizures; complicated by developmental delays and behavioral/mood issues), but he is not sick enough that we qualify for nursing care. (I haven’t been able to work since he got sick 11 years ago)
I ask because while I don’t often get sick, I got the flu a couple of years ago and didn’t have anyone who could take care of my son for more than a couple of hours. Even if I did, there is a lot of preparation (medical supplies,etc…) and instructions that happen before he goes anywhere, which I was incapable of doing at that moment. I was on the verge of calling 911, even though I knew he’d probably end up in foster care and his health would suffer with me not being able to train whoever would be taking care of him, but I was so sick I was scared I would mess up his medication or pass out and he would get very, very sick or die. (he is not able to call someone for help-I’m not even sure he’d be able identify that help would be needed- for a variety of reasons)
What do you do if you’re the only one who knows how to take care of your child for more than a few hours?
Sorry if you’ve written a post about that and I missed it…I haven’t gotten through all the archives yet.
First of all, Single Dad does not get sick, nor is ever out of commission, so this is all conjecture. But if Single Dad were to say, have a severe disc rupture and suddenly find himself bedridden, maybe he would think about such things.
As I have mentioned before, I have several copies of Pearlsky’s med / feeding list. There is one in her room, one in her kitchen (yes, she actually does have her own), and very importantly, inside a luggage tag on her wheelchair. I fear being in an accident when we travel and my not being able to communicate. The list has everything an emergency room physician anywhere would need (see it here) and any caregiver in the house. Granted, it does not go into the how to administer, but that would be figured out.
I am lucky in that I have had a series of nannies for Pearlsky and that, in one form or another, they stick around. In an emergency, any one of them that have not worked with Pearlsky for a time would come and help.
More and more I am trying to make sure that there are multiple people who know how to care for Pearlsky. One problem is learning the first and last routines of the day since I am the only one around for those. During my “back incident” I was able to describe what needed to be done by those helping.
Who are these people? I am in the situation where the government gives me money to hire anyone I want to offer care for Pearlsky. I have no family around and Pearlsky’s mother is … ummm … not the help one would hope. You have to have help, this is something none of us can really do alone. If you are not in a position to pay for help, nor get the proper (hoped for?) support from the government, possibly finding other sources, maybe a religious or educational organization is an option.
I’ve had a couple of incidents where I was instantly incapacitated, and several while alone with Pearlsky. That scares me, a lot. One of the incidents found me on the floor of the bathroom, with Pearlsky, and I was unable to move. After that, a dear friend (who, once having a idea, rarely lets it go … but I love her anyway) demanded that I get a “help, I’ve fallen and can’t get up” thing to wear at all times. Yeah, that will fit my macho image real goodly. I did get a similar device that does not use a service, but for now I have made it a point to never be out of reach of a phone. Seriously. I have a phone in every room and I am never without my cellphone. Even while in the shower, it is within reach. Not as good as a button around my neck, but close.
But what of the response? Will the responders know how to do Pearlsky’s total daily care? No. If I die tonight, will anyone know? No. But those who do know the pieces will get together and quickly figure out the big picture. I have contemplated making some videos of her care, but somehow that creeps me out. Not sure why.
The woman who emailed seems to have minimal, if any, help and that confuses me a bit. Are there others in such a situation?
Thanks! And keep on keeping on and all that.
PS I’m ecstatic to find someone who hates the Welcome to Holland crap as much as I do!
I appreciate the email and let’s see what others have to say.
I stumbled upon your blog while I was checking up on an acquaintance. Her blog linked to yours. Her daughter has several disabilities, and I was fortunate to get to know them through my nursing career. I do not have any children, and no real advice to give. Just know that someone in the medical field values your perspective. Perhaps it will help to know what the parent goes through as I take care of children with multiple diagnoses. I hope that in a similar situation I would have the determination and gumption that you do.
PS: Your story bears a resemblance to the Harrison Ford/Brendan Fraser movie “Extraordinary Measures.” Caught it on tv the other night…
The no-trained-help/single parent thing is very, very frightening. When my daughter was the various ages of most of the kids whose parents visit this blog, it was bleak enough but what I could patch together back then looks like total luxury in retrospect. I wish I could say it gets easier, more manageable. Wish I could.
I have a husband, two other children and two very part/time caregivers that help me with my daughter’s care, but I often lie in bed terrified at what would happen to her should I suddenly die. I know that her basic needs would be met but the rest? It paralyzes me. The only thing that makes me feel better (other than writing things out, lists, etc, the usual sensible, status quo stuff) is to bitterly remember that I’d be dead and thus couldn’t worry. I’m not sure what advice to give this person, Single Dad, beyond the expected — I know of several people who are caring for their disabled young adults virtually alone, and it’s formidable on every level. If there is time, the boy is young, I’d work very hard to forge some relationships — perhaps seek out a L’Arche community?
SD do you think Pearlsky misses cuddling with you as well? Don’t forsake her cuz of what others may think. In most cases you won’t but what others put in your head as wrong might just be Pearlsky’s favorite time. …..
To the mama: I’m dependant on trained caregivers for everything, and could not be safely/adequately supported by laypeople I didn’t know – increasingly I am reliant on a communication device to speak, or an eye-pointing board.
So I write stuff down, when I can. My meds, what, when, how much, how often. How to enable me to go to the toilet. How I prefer to be fed. How to move me without damaging my joints. How to dress me, turn me. How to position me in my wheelchair. How to use pillows to prop me up in bed so that I can breathe easily.
Twice in 3 years, I’ve seen my caregiver carted off in an ambulance with a health crisis of their own – both times, the documentation that I have put together about my needs enabled untrained friends to at least keep me safe while an emergency caregiver worked to get to my place.
I would suggest talking to ANY local community group – be it a place of worship, a community club, the local high school, a salsa class – whatever – and ask for volunteers. It’s a horrible vulnerability, asking for help. Vile, I hate it. But it’s a way of keeping your boy safe, at least having someone who could come to be with him for a few hours or a day while proper arrangements are made. The best way to avoid crises is to plan for them (and the Law of Sod means that they then will not happen).
I so appreciate the response from Becca.
I stumbled upon your blog awhile back (I actually sent you a message, but wasn’t sure if you ever received it..), and I hope it’s okay that I’m writing a message.
I’m currently a grad student, studying to be a special educator. My concentration is severe disabilities and sensory impairments. I’ve been reading your blog and really thrilled by it – I love how fiercely you advocate for your daughter. It’s absolutely inspiring.
I’ve only been in a couple of classrooms thus far myself, but the minimal help situation is a common one that I see. The woman I’m thinking of right now is a single mother with a 15-year-old son with CP, and she received absolutely no care, which she very desperately needed. Toward the end of my time with that class, she was on the verge of receiving some medical care help, but it was only going to be once a week and for a very short period of time, if I recall correctly.
I do worry about my students and situations like these. If nothing else, parents need the help, especially when they may fall ill, and parents need to have a break sometimes!
The only suggestion I can even begin to think of would be to create a sort of manual, perhaps with pictures of the equipment/materials needed?
My apologies for rambling, and I do hope it’s okay to comment! I’m always really shy about commenting on others’ blogs, so I’m never quite sure about the etiquette.
I think we all have this terror of what if?…what if I get sick? what if I die?.
There was an article in our local paper a while back. The parents of six teens with severe disabilities joined together and created a non-profit group home, bought a house and combined efforts. All 6 kids have now lived there for 10 years. They were able to maximize the govt services and there are now 6 families that can be called in an emergency.
Coincidentally, I was on the phone with a case worker last week, after my daughter had put her fist through yet another window in a fit of autoimmune induced psychotic rage, pleading for in home help, even just a couple of hours a week.
I made the point that I read the blogs of parents of disabled kids that live in others states/countries and they receive such services, why can’t we?
I just sort of made the assumption that others states provided such things.
Guess I was wrong.
This same case worker suggested I “take a spare bedroom and turn it into a safe room, with nothing in it except for mats on the floor”.
You gotta be fucking kidding me.
Rebecca — maybe said case worker would like to take your daughter for some overnight respite?
My favorite advice was to just let my daughter do whatever she wanted so we wouldn’t have to call 911 so much. Um, she wants to kill her little brother cause her voices tell her she has to do it. And the stupid case worker knew it…idiot.
Try calling the psych hospitals in your state, many of them have family coordinators that know about hidden resources. (or google the name of your state + any of the following: “katie beckett”, “individual care grant”, “shelter care”, “respite care”, “CHINS”, “PINS”, they won’t all be avaiable in every state but maybe you can find one thing.)
Also, try this site http://www.conductdisorders.com/forum. They can often point people in the right direction for those types of services (and you can stay anonymous, in fact they encourage that).