The trials of caregiving....

Mom as a teenager (circa 1943)

Although I do not plan to turn my blog into a dreary litany of gripes about my current situation, I need to be able to get a few things off my chest.  I don't have too many people to turn to these days, and although I could probably start a discussion on my Facebook page about the dark side of care giving, I think that would do more harm than good.

I'm writing at a moment of relative peace and quiet.  Margarita, the morning aide, came by and cleaned up Mom in bed since my mother no longer gets up to take showers even when she has assistants.  Margarita is only here for an hour on Saturdays and Sundays, so much of her time is devoted to cleaning Mom and doing light housekeeping chores in the bedroom, kitchen (if I haven't done it yet) and living room areas.

Because Mom wanted to sleep late today, I ended up giving her breakfast at an hour more suitable for lunch: 12:15 PM.  I've been up since eight in the morning, having fallen asleep only six hours earlier, and that because I took my dose of Ativan an hour before finally crashing. It's hard for me to sleep at night without Ativan now; the deterioration of my mom's mental health and her apparent surrender to the "situation" are just two of the things that keep me awake at night..

I know, deep down, that taking care of my mom has helped me become more of a responsible adult than I used to be.  Until Mom started getting sick in 2005, she was the one who made all the big decisions of the house and family.  She cooked most of the meals, did all the laundry (a chore I avoided wholeheartedly)  and handled all the finances.  I helped, of  course, by bringing in whatever income I could to help with a couple of bills and pay for my "life's little extras" of hobbies, going out on dates and even travel.  Some of my closest friends chide me - and correctly so, too - for having lived too long without really being independent or more responsible....but as the old saying goes, things have a nasty way of coming back to haunt you with a vengeance.

Whereas in November of 2009 I was only responsible for doing a few housekeeping chores and paying my credit card bills out of whatever money I make as an online freelance writer/film reviewer/blogger, now my life revolves around my mother's schedule.  She needs to be fed three times a day (more on this later), her blood pressure taken thrice daily, she has medicines that need to be dispensed at certain times and in such a way that they don't overlap too closely.  She needs to be turned in bed so she doesn't get bed sores.  She doesn't read or watch television on her own, so she needs someone - me, usually - to try and keep her entertained.

About feeding Mom: this is probably one of the toughest tasks I have because she has very little appetite these days.  It doesn't matter a tinker's damn if I cook, "nuke" a frozen dinner in the microwave or get food from a restaurant, but she sometimes eats just a couple of bites and says that she's either full or that she feels nausea.  She also has a tendency to eat more sweets than healthy food; I try to counteract that by buying Ensure pudding (which is pricey) and other non-salty healthy items, but when she doesn't want to eat, she simply refuses to eat.  What can I do? Force her to eat? I don't think I can do that.

I'd be lying if I said I was doing this job all by myself.  We do have the services of two professional health care aides during the week. One (who I don't like much because she really doesn't do much) comes in twice a week to watch Mom for four hours in the afternoon.  The other one, Margarita, comes in seven days a week; she works three hours in the early evenings Monday through Friday, and does the hygiene thing on weekends one hour per day.  My older sister, too, chips in by coming here and trying to keep mom company, but our family's peculiar mix of personalities doesn't make for a harmonious relationship with her, so when Vicky is here there's usually more stress than stress relief.

As I write this, I'm waiting for my lunch (two Nathan's hot dogs, with potato flour hot dog buns) to be ready.  I want to be comforted by some words written by my friend Leslie, who wrote:

Being a caregiver is one of the most important duties a person can have. You should applaud yourself for being so unselfish and having such a loving and caring "job". It is both rewarding and tiresome, but in the long run more so rewarding. 

I wish I could applaud myself right now.  I can't.  I feel that although I am doing the right thing by taking care of my mom, I am having to give up more than I was prepared to do when the crisis broke two years ago.