I thought I knew what hard is. Hard was being nine months pregnant, diagnosed with pregnancy induced hypertension (ankles bloated to the exploding point), and getting ready to present the first full-scale consumer awareness study to the hospital system execs for whom I worked. Hard was working full-time, while trying to be a good mother of a one-year-old and studying for my M.B.A. during nap time and at night. Hard was working a full day with two hours of commute time on either end.
Being responsible for someone who needs your help and care, it seems to me, isn’t exactly training for the Olympics. But it can feel that way sometimes.
My Dad doesn’t need assistance with the basics. He dresses himself, puts his hearing aids in, eats independently, and has the toileting thing pretty much under control. My caregiving gig is a lot easier than many.
I think what’s hardest for me is the emotional burden – dodging obstacles, holding others up who worry from afar, and coping with the no-end-in-sightedness. I am constantly anticipating problems and talking steps to circumvent them, for example, clearing my Dad’s path of trip hazards and pre-emptively clearing dishes so that my he will not take it upon himself to do so, toodling from the breakfast table to the counter with dishes in both hands (and thus without either cane or walker). When a medication stops working and needs to be adjusted, I run the gauntlet of conversations with doctors and care staff, trying to get accurate information about the situation (clarifying, clarifying, confirming) and calling and finally badgering someone into changing medical orders.
Dad is unstable enough that my brothers now worry from afar. I understand their vigilance, having felt just the same way when home in California during my mother’s four month hospice period in 1999. When I report setbacks, which have been more frequent during the last month, I get messages from my brothers asking if this is a crisis and whether they should book flights. I know their messages are code for, “Do you think he could die?” I try to reassure them. Understanding that you are going to lose someone is to begin grieving. I know they hurt. [Brothers who read this: this is not a complaint. I really appreciate your increased vigilance.]
We’re not there yet. Several times of late I’ve been asked what I will do when “this period is over” (code for “when Dad is dead”). I don’t know. I can’t plan. If I get my head in the future it will be even harder to manage the day-to-day. So I am actively avoiding long term planning.
Right now my whole world is the next two weeks, in which I hope we will stabilize Dad’s underlying congestive heart failure condition so that his weight swings and shortness of breath resolve, at least until the next unsettled period.
This shouldn’t be that hard. But some days it is. Fortunately, today is not one of them. So far.
The Henry Chronicles 
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You are IRREPLACEABLE!
My dear Betsy. Of all the hard things you listed, what you are doing now truly is the hardest. Because it’s not just the physical attention and caregiving; it is doing all that and more knowing that you are not working toward recovery but comfort in the moment. “They” say, and I found it to be true with my Dad while he cared for my Mom, that the caregivers often become the patients because they are so focused on anticipating, watching, feeding, cleaning, whatever, they forget to make sure they take care of themselves. More than on doctor said to me, “If your Dad doesn’t take care of himself, you will be taking care of both of them.”
There is the layer of being the “child” who is now placed in the position of “parenting.” That is difficult for both parties. Becoming the parent is acknowledging that the parent is declining and needs help, and becoming the child creates frustration, denial, anger, and all sorts of emotions regarding loss of independence, mobility, and even life.
I won’t ever tell you I know just how you feel. But I have a taste of it. Please, be sure to tell Todd to make sure you take care of you. There are so many people out here who love you, your dad, and your family, and I for one would pray for rest for both you and your father.
As for what comes next, I can tell you that even if you try to plan, the Universe has its own intentions, so stay in the moment to the extent you can, dear friend. You are having conversations and experiences with your Dad right now that are irreplaceable and priceless.
I love you, friend.