The good news is that Keith is finally all approved for the WAIVER Program. Awesome! We got a call from a care provider (before we got a call from the care management people which is a little suspect, but I’m reserving judgment until I get more information). I asked about the possibility of becoming Keith’s paid caregiver and was told that’s not possible in Pennsylvania through this program. She then said that she knows people have gone so far as to get a divorce so that they could care for their spouse.
There are a few other questions I need to be answered, and some more information to collect. But as of right this moment I can have someone we don’t know come in and take care of Keith while I look for a job (which I haven’t stopped doing) or we get a divorce so that I can make $11 an hour (with potential for overtime depending on how many hours he’s been approved for) and paid time-off ….. which I would have to bring a stranger into the home to take care of Keith to be able to use it.
Not to mention that it could mess up his qualification for the program in the first place (it’s household income based so even if we did get a divorce it would still cause problems in qualifying for assistance).
How messed up is it that the only way I can take care of my husband, basically a full-time job, and have an income in the state of Pennsylvania is if he is no longer my husband? All this talk by people about the sanctity of marriage and I’m faced with the very real possibility of having to get a divorce so that I can care for the man I promised to be with in sickness and in health until death us do part.
The money we had from our tax return and long-term disability is quickly running out. As much as I cringe thinking about it, a divorce may be our next desperate option to keep our family together. I’ll update as soon as know more.
Get a good hand cream! – I have to wash my hands with strong anti-bacterial soap everytime I hook and unhook Keith from his dialysis. At the moment that’s an additional 6 times washing my hands that I wouldn’t normally do. With a stronger soap than I would normally use because I have sensitive skin that tends to dry out no matter what soap I use. To say my hands have been kind of a mess is an understatement. We bought Keith Gold Bond Diabetic Moisturizer a while back for his dry skin, but I use it more than he does. I try to use it every time I wash my hands but it’s hard when you have to take care of the dialysis first and a million things pop-up while you’re in the middle of it. Regardless, this stuff is great! Highly recommend!(Please note: we know no one associated with making or selling Gold Bond, and will not be receiving any benefit from mentioning it on the blog – we just love it! But, if someone who makes or sells it sees this and wants to send us samples…well we wouldn’t turn them down.)
Anti-bacterial wipes are a must! Things happen. Accidents befall us all. When it happens with exchanged dialysis fluid it is a little more…well gross frankly. I’d be happy to explain in depth on what exactly I mean by that, but I really don’t think most of you want to know. I kind of wish I didn’t know. Anyway, we have procedures for handling the bags of fluid so to cut down on the potential number of oopsies that can happen. But clamps start to wear out and can open when they’re bumped. Sometimes gravity works for you, sometimes it makes you its bitch. Accidents happen, so anti-bacterial wipes come to the rescue to clean the floor or any other hard surface. They’re also great for wiping down everything his equipment comes in contact with. I’m sure most of you parents out there know how awesome the things are already. My advice, use brand names like Clorox (our wipe of choice, and again no one is giving me anything to say this) – the generic ones tend to dry out fast and rip more. Your mileage may vary.Note: If you use anti-bacterial wipes a lot, see Lesson 1. Don’t forget the hand cream! Those wipes are great for all kinds of things, but they are not kind to your hands.
Invest in paper towels – Being as germ-free as possible when we do his exchanges is a big deal for us. When we wash our hands we have to use either a clean towel or a paper towel. Since my days are pretty full already (please look-up the word understatement in your favorite dictionary) I don’t really have time to wash towels every day. Paper towels to the rescue! We use them for treating his catheter site and at least a dozen other things every day to help care for him. We now buy paper towels by the case, and usually, go through those in about a month (thanks, Aunt Linda for keeping us stocked on your trips Sam’s). Again, I’m one for a bargain, but I’ve learned the hard way that Bounty Select a Size work the best. I honestly use two to three times the number of generic ones as I do the Bounty, which ends up costing more.Note: I’m sure there are folks out there who are appalled by the idea of using that many paper towels when a hand towel will work. I’ve chosen paper for several reasons other than ease of use. The amount of money we would spend on water and electricity to wash towels every, or every other day, adds up fast. When you’re talking about the exchange solution you’re talking about bacteria and germs, so everything would need to be washed in really hot water with VERY strong detergent similar to what would be used as a hospital. It’s just not practical for us. I do think about the number we go through and someday when we’re in a better place and can afford to do things, we’ll plant some trees or make a donation to help the environment. Sadly, today is not that day.
Forget pride – I don’t think of myself as being very proud. Those who really know me, know that I’m really pretty self-conscious. But it’s a whole nother world walking into Christian Charities to ask them for help paying your water bill. Or going to the Welfare Office for your interview for food stamps. They all say the same thing – this is why they’re there, to help people when things go horribly wrong. But it doesn’t make it any easier. At some point, I’d like to do a whole post on the whole Public Assistance experience as I see things before I got in it and now that I’m here. Frankly, I’m not in the right frame of mind for that yet. It’s humiliating not being able to take care of your kids when you’ve worked hard your whole life and tried to be a good person, to always do the right thing. Sometimes doing the right thing means swallowing what little pride you have left and calling every charity in town for help. Or agreeing to a GoFundMe account.It takes other forms too. Like holding your husband up while he pukes on his way into the doctors. Sometimes it is cleaning up or doing things that kind of disgusts you. But you have to do it. You just push through.
You’ve got to laugh – You know the old adage, you have to laugh or you’ll cry. Well, that has become our motto. There are so many things beyond your control. The weight of his illness and the lack of money is enough to make me want to cry on a daily basis. But I chose to laugh. Only we, and I’ve pretty much confirmed this from other people, can have the same people lose our paperwork repeatedly. We have become the very definition of Murphy’s Law. And yes, we get angry and we get frustrated and we sometimes feel the world is out to get us. But at this point, it has become a bit of a game to figure out what goes wrong next.We laugh because we would lose our minds if we didn’t. We push on because there is no alternative. We don’t give up, though we may want to sometimes because we can’t. We’re from strong Western Pennsylvania stock, and we keep going no matter what.
Ain't That a Kick in the Kidneys 