A Care Plan

It's only been a month or so but Home Care seems to be finally getting itself organized. The home care nurse is at last bringing a "care plan" to my apartment so that the home care personnel will know what to do when they get here. So far, visit after visit has been cancelled or very short because there is no care plan. Now, at least, there will be a reason for them to be here.

I see this as one of the most significant results of the loss of a case manager. Not having a case manager means I am left to my own devices in handling the vagaries of our health care system. It is not that I am ungrateful for the care itself, I most certainly am. It is simply that care becomes more challenging to manage and more inconsistent without a coordinated approach. Left to be my own coordinator, I am at a loss in many cases to understand both the services and the system. So things persistently get delayed or go off the rails.

There are a lot of challenges with this or any other serious illness. For me, any kind of care has limited benefit in terms of disease prognosis or cessation. With ALS, care is not about cure; it is about quality of life. The professionals in this area don't talk about extending life as much as they do about making sure that you have reasons to live and good quality of life.

For me, there is a lot of "why bother" creeping into my daily existence. Why bother getting up? Why bother getting a haircut? Why bother cooking breakfast? Why bother getting dressed? Well, oddly enough, having a care worker come in on a consistent basis will help with a great many of these things. I will bother to get up because the care worker is coming. I don't want the care worker to find me naked, so I will get dressed. If I don't feel like making breakfast, I can ask the care worker to do it for me. As to the haircut, I'll get there.

A good care plan involves a lot more than simply the actions of the care giver. If done well, the attention itself improves the quality of my life. Having someone help with my exercises to keep my muscles loose will reduce the cramping and pain when I sleep. Having someone tidy the kitchen and empty the dishwasher means I feel better about working on food preparation.

I know my friends and family care about me. The time has arrived when I also need someone to help care for me. I'm not happy about it; it is another stage in my illness and it must be this way. I am happy that it will improve the quality of my life, or at least I hope it will. Let's see what happens over the next few weeks.