Nobody Plans For ALS

I let Rosa, my housekeeper, go today. It was the first in what will be a series of enforced economic decisions as my financial viability winds down. It's not that Rosa was terribly expensive. I paid her $50 for two hours of house keeping. It used to be every week but now that home care provides cleaning once every two weeks, it have come down to having Rosa in the alternate weeks. That meant roughly $100 a month.

A hundred dollars is not a lot of money, unless you need it and don't have it. More importantly, it represents the potential for other choices as things be tougher on a financial basis. For example, that $100 is enough for me to go out with friends once a week for a month, assuming I don't drink a lot or eat out as well. One hundred dollars represents 2/3 of my monthly TV and Internet bill; I am on the Internet almost constantly at home, except when watching sports or documentaries on TV. That $100 a month will cover almost all of my property tax bill.

There are other financial decisions to come, soon. Once my money runs out, most likely in March, I will have my pension of $1,100 a month and probably a supplement from the Alberta Income Supplement for Handicapped of about $300 a month, for a total of $1,400 a month. That won't even cover my mortgage, let alone taxes, household costs, food and entertainment. Of course my truck will go almost immediately; I will have to stop making the payments of $780 a month. Once the truck goes, I won't have gas or maintenance. I also will no longer have freedom or independence.

Even with my pension and AISH I won't be able to cover the most basic of expenses. It costs me around $2,500 a month to keep it all together, and that's without the truck. Add the truck in and you get around $3,500. That means I will be about $2,000 short a month, or about $1,000 if I lose my truck, something which is a near certainty, especially once I lose my ability to drive.

There will be lots of opinions on why I am in this situation. Some will say I should have planned better. Some will say I should have saved more and spent less. Some will say it's my own fault. All of them will be partly correct. I didn't plan on getting ALS, the single most expensive disease possible. I didn't realize that spending money on my family and life over the years was really a bad idea. I didn't think that helping my kids whenever possible was such a bad thing to do. I didn't think that I would live longer than planned with this terminal illness.

Nobody plans for ALS. Nobody plans to lose their career in their highest paying and most productive years. Nobody plans on a bitter divorce and its attendant financial destruction without time to recover. Nobody plans on the costs for wheelchairs, home renovations, truck modifications, home care. Nobody, not even me.