For those of you who follow the continuing Singer Saga on Facebook, you know that things didn’t exactly go the way I had hoped at the 2nd home visit. They went fine, it does look like he qualifies for the program, but we have a slight hitch. We were told that I cannot be his paid caregiver because we’re married.
It turns out that there is a rule in Pennsylvania about not paying people to take care of someone that they could profit from upon the patient’s death. I believe it’s supposed to cut down on the number of people trying to off someone who is sick so they can collect insurance. It’s a little scary to think that there were enough people willing to neglect or straight up kill someone they were supposed to love to get money that the state had to make a law/rule to stop them. At this point, Keith is worth more alive than dead, so I don’t really see a bonus to getting rid of him.
In theory, there are several ways around this particular rule. The spouse part is not written into one of the qualifications for one part of the program – so there is nothing in black and white there saying I can’t do it. There is also the possibility of getting hired by an agency that does home healthcare to work for them for Keith. Then there’s something about Keith technically becoming a business and hiring anyone he wants to work for him (the state requires that someone else handle the “business” side of it and has an organization that does things like taxes and so on). Both of these are possible options, we just don’t have enough information to move forward right now.
The other option is to have someone come in the house and have them take care of him. Someone who would have to be trained to do his dialysis and administer meds – an added expense most companies are not going to want to take on. But, allegedly, I would be able to leave the house and hold a full-time job while someone else takes care of him with the time between the actual caregiving moments billed to “respite” care (personally I’ve never thought of work as a respite, but ok). Neither Keith or I are very fond of this idea, for many reasons, and would really rather not go this route. Keith has said he would rather not do the program at all than have someone come in and look at him all day. Frankly, he’s just not that interesting.
As I’ve stated before, without the paid caregiver money we are in deep doo doo. Someone really needs to be around him all the time. So either I have to do it or we have to bring someone in. Either I get paid to take care or Keith or I find a job that lets me do both, and the options that let me do both are limited. I’ve been trying to make doing both turn into enough money to support us for about a year now, but so far it hasn’t worked. I’ve got a few irons in the fire, but I’m a long way from full-time money during the times I’m not working with him. There are down times (like as I’m writing this while he naps), so doing things like freelance writing works best if I’m trying to stay within earshot.
Where do we go from here? I’m still trying to figure it out. There are still options, I just need to figure exactly what they are and how to do them. I’m waiting to hear from the social worker and a few others with suggestions. All of it is theoretical until we hear from the Waiver Program and local services with all the official paperwork, but with everything we’ve been through I find a certain comfort in planning ahead as much as possible.
So we are still in a holding pattern. We’re okay for another month or so after that thing get…complicated. Again. We’re still hopeful, but nervous.