A Health Care Advocate

There are days, like today, where I get really tired of the exercise of being an advocate for my own care. I don't have anyone, beyond myself, who is in a position to navigate the web of processes and people involved in the various elements of my care. I'm not sure which is worse to manage, the process or the people, but doing them both tires me out, wears me out, at a time when I have so little energy for it.

My comments below should not, must not, be taken as complaint. They are just examples of the various kinds of things I have to manage these days. They all take energy out of me, be they good or bad. Even the best of things can make me tired, things which benefit me. It's just the way it is. They may not seem like a lot to some of you, but they are a lot to me.

Today I am navigating issues with the Home Care agency as they try to resolve their issue of not having appropriately trained people on the weekends, especially when one of my regular care givers is away for any reason. I think, in the final analysis, the agency is going to tell me they will have to send a Licensed Practical Nurse, since the LPN's are supposed to be trained in all care needs, especially my more complicated and personal care needs. However they are also going to tell me that if they have to go that route, I will have to accept lengthy delays in care on those days when my regular care givers are not available. In short, if they don't have the coverage, I'll have to wait in bed until they get to me.

Another issue I am dealing with today is my move towards Self-Managed Care. Alberta Health Services has "changed their process" for applying for self-managed care. In addition to re-applying I will have to retake their "special seminar" on Self-Managed Care. They are booking seats into March right now, so no matter what I do it will be at least three months before I can even begin to look at a live in care aide or other modes of care delivery. This, of course, assumes that my already over-burdened AHS Nurse Case Manager is able to get them the message that I need to get to Self-Managed Care as quickly as possible.

And then...

Today the wheelchair technician from the Alberta ALS Society came by to make adjustments to my power wheelchair. I have my "old" chair back and I am thrilled. The adjustments were needed and, as usual, the ALS Society was right on top of it. Alan, the technician, came in and spent a couple of hours adjusting the seat back, seat depth, foot angle and any number of other smaller things. All that time I was basically trapped in the chair, as he adjusted it to my own needs. I am very happy to have a chair that fits me and happily sat while he did the work.

But I am exhausted now. I need a nap, a long rest. Being my own health care advocate is exhausting.