Tuesday, February 19, 2019

Caregiver Thoughts - The First Round

[This post is written by my husband and caregiver. He will contribute occasionally.]

Perspective from a Caregiver

When the news first hits, there are so many thoughts and Thoughts and WTF??
  • Whew, it's not me!
  • It should be me! No! Maybe? Yes, me!
  • Dodged a bullet
  • But why?
  • No-no-no-no, not my wife/husband/partner/best friend!
  • What if I get sick or killed too?
  • Who's picking up the kids today?!
  • What does this mean?  And what should I make for Dinner?
  • I can't deal with this?  Should I deal with this?
  • Is this Real?
Scared, panic, worry, the mundane. When first hit whacked broadsided slapped given this news my reactions were all over the place. Learned from others in a support group that I'm definitely not alone in reacting like this. 

The Commitment

I guess one of the first things that blew by me at the diagnosis was that I had mentally made The Commitment to stay with my gal. It did not even cross my mind till later, when I had to reassure her that I was not going anywhere.  And I have both had to and felt my own need to reassure her since, in many ways.

From others, we've heard many different stories: from my sort of response, to others bailing out before the diagnosis had even left the doctor's lips.  Certainly those who had relationship problems before, this is one of those life-altering events that can rip people apart or bring closer together.

I want to judge those who can't commit, because emotionally we can't help but be judgmental.  But I also can't really judge anyone because I really don't know their stories.  Even when I do know a bit, it's still less my place to adjudicate.  It's hard not to, especially with some of the awful behavior people do.  And it is just so frustrating to hear about the breakups and divorce in the midst of dealing with such an illness, especially when kids are involved.

Surprisingly, some of the bad behavior comes from the sick person themselves.  In one case we heard of, brain mets changed a person's thought processes quite a bit. Still able to function quite well, but this person pushed all away but an older child.  That's scary, especially for the former partner.  Will that happen to us?  We worry about that occasionally.

So, I've made my Commitment both a long time ago and recently with the illness.

Telling Family and Friends and Co-workers

This was relatively easy for me to start to do, but I had to stop myself and wait for my wife to figure it out who to tell, and how and when.  It was important to her, that control of the messaging.

Especially as a Teacher, she needed to come up with way to tell her school and students.  Leave it to her teaching instincts to find a way to use this to teach her students something too!  I love her for that.

Telling my co-workers and business partners was my task, and that went straightforward for me.  Reactions were mixed, but mainly supportive.  Generally grateful, although hearing and saying the same things many times does get old.  But it was new to those who had not heard, so I worked through the repeats.  Learned and heard many cliches!

Personal Care

Feels guilty and shameful to talk about, doesn't it?

I'm the lucky one, not ill.  Hopefully not going to die before my time!

But I need to be there healthy and able to help her, and our kids and the rest of our family.  So, personal care is as important as any medical care.  It took me a while to get that sorted out mentally.

Medical Self-Care

First and foremost, even in the midst of some of our busiest times in the hospital and rehab, I still had my own doctor and dentist and other appointments to take care of. Sometimes they got pushed out maybe a little too far, and then I had to catch up on a treatment so I would not get sick.  Running out of a prescription once, I found I really did need that drug, darn it!

Moral of the Story:  Don't let something like a bad tooth bring you down.  For want of a nail...a war was lost.

Just Self-Care

Most of my self-care is actually very small and very personal.

Pho Soup

I often go to lunch on my own.  I carve out time on the calendars for stuff for me.  Even going grocery or other shopping on my own becomes in some ways my time.

And I continue my Volunteer works, although vastly scaled back in some cases.  But Red Cross blood donations I have continued to this day, after gallons donated.   Simple, and important to me.

BTW, I'm an INTJ/INTP if you know what that means. Basically Introverted, so I will internalize a lot.  Which is why eating alone is nice, since I don't have to rev up the energy to make conversation.  I like to be alone for long periods, and it helps me recharge and rejuvenate.

Other physical things I like to do are just simple walks, taking the dog around.  Been years, but when I can get to do them Dry Saunas are always great for my sinuses and ears.  And deep-tissue massage once or twice a month I've tried to keep doing, as I really notice when I don't get it.

For me it does not have to be a big deal or even cost any money.  And money has been very tight for us the last few years.  But a little special thing just for me sometimes is worthwhile. Such as I'll buy a special brand of pickles I like, and not share it with the rest of the family!  Yum.

Laughing at the situation

We use a lot of Gallows Humor.

For example, my wife says she'll haunt me from her urn when I try and bring a future date home.  I tell her that urn would get stuck out in the shed for the date, and please-please no haunting after midnight!

I've always loved that about my wife  Her wit and humor has meshed well with mine (mostly).  And we have been able to joke about things from time to time, such as the urn jokes and other silly things.

Sometimes that is the only response I find I can have.  The absurdity of the situations, the unfairness. Our humor has helped us.

https://XKCD.com often has helped me!

Letting It Go

When my wife had to go to a Rehab Facility was probably one of the hardest times of my life, outside of the ER visit that preceded it and the time she spent recovering in the ICU.  Rehab went on for weeks where I would spend the afternoon and evening and sleep at the Rehab with her.  Get up early in the morning, run home and take some kids to school, shower, check on the place, get mail, run errands and then scoot back to be with her.  After a week we fell into a rhythm, and I got a usable chair to finally sleep in.  But during that Rehab time, I neglected a lot of other things and people.

I bought the kids the big box of Ramen from Costco, as they were old enough to feed and mostly take care of themselves.  I didn't buy the good Farm milk for a while, but the store milk (trust me, we have heard about the differences! :-)

Someone would stop by and take the kids to Scouts.  Our eldest daughter and family friends did a lot of driving around and errands for us.  And my family -- my sisters and my parents -- helped when they could

I mostly just let the household run itself.  Being in a (non-paying) tech startup at the time, I had a freedom of schedule that allowed me to work where and when I pleased, and that turned into a major blessing at that moment.  But I still feel a little guilty about that, especially worry about neglecting the kids too much.

Volunteer Works: During the Rehab I missed many meetings and events then, but I more than earned enough karmic credit to do that! Even though my Volunteer work makes me feel good by giving back, priority is always family first and that moment in Rehab was just such a time.   I've scaled back my Volunteering tremendously from just a few years before the cancer, and I sometimes look back and wonder that I was able to do all of that extra volunteer work while holding a full-time job!   Youth and Vigor and Stupidity, I guess.

Topics I Hope To Cover Later

Once you get started, there is always more to say.  Maybe soon I can get to these, but if not, we'll see Letting It Go above!
  • Asking for Help is Hard.  I've never wanted to be a Burden!
  • (Not) Planning for After
  • The Cliches of Cancer - Caregiver Version
  • After the Help and Volunteers stop coming: the perils of living too long
  • Healthcare Power of Attorney - Taking the Burden
  • Navigating the USA Healthcare twisty mazes
  • Elderly Parents and Other Family Crises

*All Images from: commons.wikimedia.org

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