Tuesday, 7 March 2017

Who Will Care For Me?

I'm up, finally, at least for an hour or two, probably not much more. The virus which has, for the last 48 hours, been attempting a hostile takeover of my body seems to be losing, thanks to the miracle of even my severely compromised immune system. The raging sore throat is down to a minor tickle. The swollen feeling in and about my left ear has diminished, marginally. The headache is still here, less present than yesterday.

Today I did not have the energy or strength to get out of bed at all. It wasn't until about an hour ago that I thought it might happen. The combination of bodily need and hunger finally convinced me that the effort was worth the outcome. Since then I have managed to use the bathroom, make a cup of coffee, and warm up some leftover chicken dinner. It seems silly to be proud of this small bit, yet I am, having done it in the face of a tough virus and advanced ALS.

It does bring up a difficult question. Who will care for me? In this last couple of days, Jessica has spent a few terrific hours looking after me. My daughter dropped by for bit to make sure I was still alive and well. Home Care was here yesterday morning, when the worst of the virus set upon me. She completed her tasks and was on her way; I am a client, one of many. I spent most of the time alone, in my bed, sleeping on and off, wondering when my urine jugs would get so full that I would have to get up and empty them, wishing I had my laptop so I could write in bed, wanting something to eat while not wanting to get up and get it.

One change is happening tomorrow. Home Care will now come every morning, however their role is limited. The will do their tasks and leave. If I am sick, they are not here to nurse me back to health. If I am too sick to get out of bed, like yesterday and even today, they will leave me there, alone, to deal with my life as I must.

Who will care for me? I have no live-in care; I don't really need that yet. The proof is in the fact that I am up and about right now. I have no wife or partner. I messed that up a bit by leaving my wife and asking for a divorce 10 months before my diagnosis. Regardless, even had I her care I suspect I would not be doing as well as I am right now. All the care in the world won't compensate for a poisonous marriage situation.

My children do not live with me; my ex-wife won that battle in the divorce, with my daughter and her family living downstairs in what was once our family home. My daughter and ex-wife are living out the model of my ex-wife's mother and sister, the sister who gave up her life to stay at home with her widowed mother, never leaving home, never building any life of her own. At least my daughter has married and had children, a process she started while I was still married. I am glad for that.

Even if my daughter here in Calgary lived with me, she has a busy career and social life of her own. She is involved in a committed relationship which has all the signs of leading to marriage. I cannot ask her to give up her life for mine; that's just wrong and unfair.

It would be nice if I had the money to buy full-time, live-in care. Maybe I could get a trophy wife like all the rich men do. Of course then I would end up with a wife who is in it for the money, not for me. That would likely end badly. Divorce is messy and expensive. I wonder how Donald Trump works it out. It's interesting to note that he and Ronald Reagan are the only two US Presidents who have been divorced, and both of them are Republicans. Oh well, enough of that.

The reality is that I am the only one, when all is said and done, who will care for me. That is until I can no longer care for myself. Then I must choose between institutionalization or death. Do I accept the strictures and constraints of living in care, or do I choose that as my final scene? It's not a decision I have to make today, although I was wondering last night as I worked to breathe. It is, however, one of the many questions that I ponder on a steady basis, questions about how I live and how I die, all brought on by ALS.


  1. I do thank you for posting something. When your blog is late in the day... I wonder if I'll ever read any more of your blogs, meaning you've given up writing all together because of the effort it takes out of you... And that saddens me. First for you, and second selfishly for myself, because Richard you write one hell of a amazing blog

    1. Thank you for that. I am going to be earlier in the day from now on, at least most days. Home Care will be coming in around 9 on Tuesday, Wednesday, Thursday, and Friday. They will stay at 10:30 on Saturday, Sunday, and Monday. That way they don't come in early on a social night. What I will do with all that extra time in the morning is tough to say, other than write earlier.