Taking care of the caregiver

My mom is fond of saying “I never thought it would be like this”, referring to her physical situation, her medical condition, and so on. I think she thought she would be on the go, active and independent until the day she dropped dead in her tracks in her home with her cats and her husband. She never shifted her reality, even when her physical condition deteriorated and she broke her hip…. always thinking that someday she’d be “whole” again.

Honestly, I never thought it would be like this, either. I figured that someday I’d be caring for one or the other of my parents at the end of their life… didn’t consider it would be both. I also knew my parents were not the most positive of people, but I did not realize my mother had it in her to inflict so much emotional pain. I never thought I’d be struggling to keep my head above water physically and emotionally…. with a mother who rarely seems to feel empathy.

Will you be happy when we die?

That’s the question my father asked me the other day, on the way home from an appointment. Of course, my answer was “no, I don’t think I’ll be happy when you die…”

“relieved?” he asked

“to tell you the truth, I don’t really know how I’m going to feel when you die. I have no idea” I replied “There have been a lot of really good things about having you and mom living with us”

I’ve been thinking a lot about that conversation. No, I won’t be happy when they die. But there are times when I wish I could get away from the responsibility for a while.

I looked up “responsibility” and “responsible” online at dictionary.com:

responsible

1590s, “answerable (to another, for something),” from Fr. responsible, from L. responsus, pp. of respondere “to respond” (see respond). Meaning “morally accountable for one’s actions” is attested from 1836. Retains the sense of “obligation” in the Latin root word.

Online Etymology Dictionary, © 2010 Douglas Harper

Here’s the legal definition:

Main Entry: re·spon·si·ble
Function: adjective
1 a : liable to be called on to answer b : liable to be called to account as the primary cause, motive, or agent c : liable to legal review or in case of fault to penalties
2 : characterized by trustworthiness, integrity, and requisite abilities and resources responsible bidder>
3 : able to choose for oneself between right and wrong
4 : marked by or involving accountability responsible office> —re·spon·si·bil·i·ty nounre·spon·si·ble·ness nounre·spon·si·bly adverb

It would be nice not to have to be accountable to, or liable to be called on, or to have to be trustworthy, or answerable to, or obliged…. for a little while. I don’t want to abdicate all responsibility, but sometimes I’d like to be able to simply enjoy their company without that duty.

You know?

GUILT

Yes, guilt. The thing that parents and children are experts at giving out.

No matter how well I feel I’m doing, I never feel like I’m doing it well enough, or quickly enough, or thoroughly enough. I’m told that it’s important to take time for myself, so I insist on having health care workers come. Then I wind up doing errands and taking my dad to appointments the entire time I have help.

I don’t think my parents understand the concept of “me” time sometimes. I’d like to stay home and bury myself in my bed or work on a project without interruption, but if I do, my mom wants to talk to ME, ask ME a  question, ask ME to do something (as opposed to having the health care worker do it). I suppose I need to tell my parents I’m leaving, open and close the door, and then creep back upstairs with a packed lunch for later.

Even if I’m out and about, I’m subject to a call from time to time from my mom asking when I’ll be home (this only happens when my dad is around and dials the phone for her) in tears. I told my husband I guess I don’t think I’m very important, because the needs of everyone else trump mine. I’ve stopped planning to do something in the future because there is always some crisis that trumps my plans and knocks them out of the ballpark. How can my dream of taking a class to have fun take precedence over a son or daughter’s anxiety attack or a mother’s pain, or surgery, or weakness? If something has to give, it’s going to be my plans. If I were to choose to follow my desires, would guilt make them impossible to enjoy?

I wonder if other caregivers feel the same way. How do they reconcile these feelings?

I have an appointment with a new psychologist tomorrow. Yes, I’m going to the appointment. I hope this is a good match. Maybe I can find a way to enjoy my life.

Getting through the day.

This is how I feel today. Getting through it. Lonely. The sun is out, the weather has warmed into the 40’s. I think that’s the main thing that has kept me from sinking deep and staying there.

Mom woke at 3:40 with a vivid dream and needing to get to the bathroom for a change of nightshirt and brief. When someone takes as many sleep-inducing medications as she does, this is a struggle and a half – with me doing a lot of the holding up, cheer-leading, and clean up. She thanked me for all I do when I got her back into bed.

She slept until 9:40am and I did, too – turned off my alarm and didn’t get up until she called me. Home health was due to get here at 10, and it was a new worker, so the nurse supervisor would be there to “orient” her. It did not go well. I got mom cleaned up, partially, then turned her morning routine over to the workers and started getting the breakfast put together – coffee, medicines, etc. My dad had been waiting a while to eat and needed something so he could take some of his meds.

Half-way through the breakfast making routine, mom called my name. I went into the bathroom and got a tongue-lashing for having left her alone with new people. She was angry and sobbing and chastising me… and said the only person she wanted to get her ready in the morning was me. Ever. When I told her I couldn’t guarantee that, things went down-hill.

It’s amazing how little changes can throw her off. I do things a certain way. She’s used to it. If someone dresses her differently or moves her in a different way, it’s traumatic. And it’s also wearing on me to have to do this day after day. I know she loves me, and I appreciate that she is happy with how I do things, but I can’t be here all the time.

This day has been incredibly depressing and lonely. I wish there were others I could talk to who understood.

Day 5 dealing with depression

Today I felt overwhelmed by frustration and depression. Mom is not moving well, and I’m tired. Dealing with the back end of toileting is also getting to me. And since mom would rather I took care of her, she’s holding out on using the bathroom and laying down for a rest until I am in the house. This defeats the purpose of having paid caregivers here. I’m not saying it doesn’t help to have these helpers do my housework, but the housework was not what was getting me down and irritable… it was having to drop whatever I was doing at unpredictable intervals to care for mom (or dad, at times). It was the constant company of my parents, the caring for them, that was what I really wanted help with.

I’m angry that my mom seems to care more about the cats in the household than my emotional well-being. I’m angry that my father thinks that if the caregivers are not constantly in motion and cleaning or working that they are not earning their way. I’m extremely depressed today and in need of some long, quality time where I am not responsible for anyone or anything.

I know this will not last forever. But it’s very difficult to deal with now.

Journal, Day 1

I’ve decided to start this blog in order to keep the my day-to-day struggles and rewards as a caregiver of my elderly parents. I welcome those who wish to join me in the discussion, as well as those who have advice or struggles of their own in this issue.

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