STROKESPERSON

why don’t you listen to me when I try to talk to you
 Stop thinking of yourself, for just a second fool
 Shut up, shut up, I don’t wanna hear your mouth
 Your mother made a monster, now get the hell out of my house
 
 Can’t stand it for another day
 I ain’t gonna live my life this way
 Cold sweat, my fists are clenching
 Stomp, stomp, stomp, the idiot convention
 
 Which one of these words don’t you understand ?
 Talking to you, is like clapping with one hand

I am getting to the point, where sometimes I might be a little repetitive. Actually what I’m trying to do is reflect on what I’ve already written and going into a little detail that may be helpful for people who have had strokes and friends and family that support them. I have often said that a lot of books I read should’ve just been a journal or Atlantic article, that they tend to go with one thesis and just hammer away at different details and from different angles. This may be one of those cases. I’ve talked about how important support is in your stroke. I’ve done little research on strokes and support and fact if you search reddit, a sort of online community with lots of information, for strokes you will find strangely that most the conversation relates to male masturbation, a different kind of stroke altogether.

But what I’m really talking about here is someone who is going to be your “project manager” for at least the initial period of your stroke recovery. As many of you know in the early days of my stroke I would give anyone who would listen to me, two pieces of advice; choose your spouse wisely and choose your friends wisely, everything else will fall in place. As younger people we often chase the wrong partners for the wrong reasons. For example, chasing Miss right now versus miss right. An example may be, seeing a woman at the bar who could literally stand a beer on top of her butt while she is standing and developing a sense of attraction to her. This is probably not the best criteria for selecting a lifemate. There is always a sense of randomness to find the right person and I’ve never been known to harbor a belief in a soulmate. However, putting yourself in the right place, with the right attitude will often set in place finding the right person to spend the rest of your life with. Okay, this is not a dating advice or pro-marriage jeremiad I’m just setting the stage for the rest of this article.

When you had a stroke, you need someone who is going to take care of all your affairs. Family, personal, social, financial, workplace, home, etc. all the pieces of your life that you seriously cannot pay attention to right now. Like I said you’re basically concentrating on the very bottom of Maslow’s hierarchy of needs in terms of survival. You need someone to be your Leo Mcgarry to keep everything in line. To keep all the balls in the air, the line moving if you will, as you moyoveurself towards recovery. I was lucky enough or maybe skilled enough to have the right person to do this.

I imagine when she took these vows of in sickness or health, she probably had a lot longer timeline than what she ended up doing. She probably imagined helping anelderly retiree get around the house, slightly hobbled and not the fucking disaster that would hit me in early middle age. Thankfully she was more than up to the challenge. This person is going to need to help you in everything you do, early on it may be doing disgusting things like helping you with a urinal or to the restroom, things you could never imagine when you are dating. So if you’re thinking about going serious with someone, imagine these moments with her as a victim/patient or caretaker, if it doesn’t seem possible, don’t put a ring on it. Because someday it’s likely to happen, I often wonder if the shoe was on the other foot whether I’d be able to do it. I’m certain I wouldn’t do it as well as my wife.

There is the day-to-day of all of a sudden being a single parent. As someone who does a considerable amount of housework, this soon but fall on top of Becky. Getting the kids off to school is sometimes a Herculean effort even with both of us, this became one person’s job. She had to take over the finances and not make me crazy because of my meticulous nature of having everything down to a penny. And this is just part of it and she certainly had a great deal support with the kids, house and food from our many friends and family but it was mostly on her.

Another piece is critical is making medical decisions and keeping track of appointments, an essential part of this project management. Having a stroke even if you aren’t cognitively disabled is complicated to manage, nurses etc. will help you with your meds, getting appointments in the hospital and generally being taken care of, once you’re out that kind of disappears and falls on you or your caretaker. I also suffer from hating to talk on the phone and everyone wants to talk to you after you’ve had a stroke, I’m not sure how people who do not have the support and I ran into a lot of people in the hospital who basically had no visitors and may have an elderly spouse that didn’t have it totally together and wondered how they did this, a lot of them ended up going to nursing homes afterwards because they did not have the support. Just another reason I’m thankful.

Managing finances, working with your work’s human resource department to make sure you keep getting paid while you’re out getting the right paperwork for a possible return is essential as well. For someone like my wife who oversees human resources, she had a great deal of understanding how this all worked, her experience in project management was also very helpful, while there are no Gantt charts or other organizational development pieces in this thing, there certainly could be, this stuff is very complicated and I’m not even bringing up the piece about managing insurance which we were very lucky to have high quality of.

Another overlooked piece of managing and caretaking is “managing”your collective personal life. Organizing all the visits and visitors is one piece, getting the right message out is also a piece. Certain people have certain needs and need to know certain things, other people do not need to know things, things that are personal and private and may pertain to onlyyour closest friends and family. Managing the time that people visit and knowing when the patient is tired or can’t handle a particular person at that time. My wife happened to use a website called helping hands to help organize all the willing do-gooders during this entire episode. It also worked as a portal to get information to everyone, pictures of progress, things that were going on, it was extremely helpful I think for everyone as everyone really want to be helpful. There were times I’m pretty sure that people were making Rebecca crazy, not going through the protocols that she attempted to establish and trying to make their own way through a complicated system that was designed to support me as a patient. As a person trying to support someone with a stroke, please try to follow those protocols, we know it’s not how you usually operate and it may be impersonal or sterile particularly to those of you who are very close, there willalways be those who don’t follow the rules and we know this, but let the caretaker manage how they need to.

So my basic advice is first, don’t have a stroke. If that happens however make sure you as a patient can best support that one person who is there to support you, right or wrong, mad or sad or whatever range of emotions that you’re going to have. This is actually the hardest part of the project managers job is trying to manage the emotions of the patient. As a stroke patient you will cry, you will be sad and you occasionally will blubber like you’ve never cried before. Even if you are areal tough guy who tries not to show emotion, you will be severely tested. The key is to let go, to cry, and still keep a positive attitude that things are going to better. Both these pieces the crying and the positive attitude can work together, neither you or your caretaker should act like everything is fine, because it’s not, it fucking sucks. But two of you (or two or three or four however you roll) are gonna be the key people in getting better and moving back to the life you had, the more that you realize that this is a team effort that can probably only be matched by having children together the better off you’ll be. Managing your joint emotions and being honest with your partner is a critical piece of this. In my next entry I will touch on this in some detail. For now, even if you’re healthy person ensure that this partnership is strong and infallible. If you already suffered from a stroke, have a detailed heart-to-heart conversation, don’t leave anything out, because you will fail and suffer if you don’t.

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