Thoughts on Caregiving and Taking Care

Since many of you have asked, both in comments and off blog, I wanted to give an update on Rick after the surgery and offer some thoughts about caregiving and taking care.  It's a topic I thought I knew something about -- but I realized my knowledge left much to be desired!

My version of a tutorial done by Life Imitates Doodles at Doodlewash

My mom died when I was 25. I lived locally but not at home and although I visited frequently, I didn't really have a lot to do in the caregiving role. That fell Dad, who took her to appointments in town and at Mayo, picked her up off the floor when she'd faint after the brain tumor took hold and handle the cooking, cleaning and home care. And that was while he was still working.

At the hospital during Mom's last few weeks

When dad was ill, I was older but working full time. After we sold the house he moved into an apartment near my office and not far from home and while I took him places and helped out at the apartment, he was still relatively independent, doing his own shopping and for some time, even driving. It was caring and taking care, but not what I'd call hard core caregiving. Then he was in assisted living where someone else did the heavy lifting.

So, while I understood it emotionally, I didn't really get the whole thing in the way I do now.

Compared to the dilemmas so many people face medically that affect them physically, mentally or both, Rick's broken leg wasn't exactly at the top of the life threatening list -- until the blood clots came along. Then the game changed, the anxiety increased. The leg itself has been been frustrating, annoying, a nuisance, and following the surgery, quite painful. It has stopped him in his tracks and he doesn't like to be stopped in his tracks. A period of true adjustment.

For me, it was caregiving. Maybe not the intense caregiving I know some of you have done in the past. But more than what I had experienced before.

I felt that my job as caregiver included:

• Making sure he ate well
• Making sure the house was safe -- no throw rugs or obstacles
• Making sure he got to appointments and if requested (and he did) taking good notes
• Keeping the house tidy. Maybe tidier than usual.
• Keeping the anxiety down or at least supporting as much as one can when it raises its ugly head.

For those of you who have only recently started reading Marmelade Gypsy, Rick and I aren't married. We've been together 23 years and spend loads of time together but we live about three blocks apart. This is a wonderful situation in most ways -- we have our space, our schedules, our time together and our time to crash and do our own thing. It's not everyone's gig, but it's worked for us.

But as I was taking care of Rick -- keeping his house tidy, cooking meals I probably wouldn't normally  be eating myself and going back and forth to feed Lizzie and crash into bed at night, I realized I wasn't doing a great job of taking care of me.

And maybe I was taking a little bit too good care of Rick, at least in the pre-surgery days.

This has been a hard injury for him. Now granted, he's had numerous skull fractures and head injuries in his cycling days, MRSA, pneumonia, quite the list! But he's never really come to terms with the possibility of aging or mortality before, at least not in such a real way. That this happened because of something as uncomplicated as a fall on the ice is a bit hard to wrap our heads around.

I was so worried about him, I fear I crowded a bit. We had a mutual friend who died from blood clots and leaving him alone was difficult, as we both remembered that life can end in an instant, even when you least expect it. I wanted to be sure he had what he needed, when he needed it, so that he could concentrate on doing the things he could and getting the rest he needed.

After being down for close to three weeks (the week prior to his surgery) he said, "You need to take the day off." He made breakfast on a Sunday morning. He started to manage his own breakfasts and lunches.

I think I'd been hovering a little too much. He didn't need reminders about taking his pill or using his crutches on wet surfaces. He just wanted to be normal and regain some of the independence he so values. There's love and there's overdoing it.

My friends repeatedly told me to take care of myself, too, and I thought I was. While he napped, I would read or pick up the kitchen or plan meals. Of course, I'd never really planned meals before.

Yup. At my age. Weekends we always eat together, sometimes during the week. But we have week-lives. He rides his bike or has music practice; I might have things on my calendar too. My typical dinner is a sandwich, salad or soup -- maybe a combo, maybe a Lean Cuisine. It was definitely not Rick food, which usually involved potatoes and meat or pasta.

You learn. I learned to make more chicken thighs than we needed so he would have lunch the next day. The same with pasta or chili. It's not that I'm a bad cook -- I'm not. But I'm not a big cook. Yes, I learned.

Eventually, I would leave his house earlier, head home to watch a mystery, read or make felties. I would spend mornings at the computer or painting before heading over for lunch. I snugged with Lizzie. My house was still a mess but my head was becoming clearer.

That changed after the surgery, which was Monday. We checked in at 12:30 and a couple of hours later he went in, the doc coming out maybe 90 minutes after to say it went all right. Huge relief! But it took him a long time to come back after the anesthetic. We didn't get home till around 9 or so in the evening and we were both whipped.

Since, it's been a matter of laying very low. The pain has begun to set in and with it the sheer sense of "how in the world can I possibly get from the bed to the bathroom?" feeling. There was a stumble that scared us both but fortunately the doc said not to worry on it when we called him the night it happened.  I've been "down the street" now for 24/7. We've watched Marx Brothers movies, travel videos and eaten healthy food. Our spring activities aren't what we planned on but they are what we have. And so, it goes.

Yesterday Rick said "Bring Lizzie down to stay," so we came with litter box and food. She proceeded jump onto the counter (I didn't even know she could jump that high!), crawl into every cupboard or closet that had an opening, hide in the boiler room and climb up in the crawl space for the electrical wiring. I've put up more barricades than in "Les Mis." (She appears to have settled, though she got so freaked with Rick's crutches she hissed at both of us!)

Today -- two days after surgery -- is his worst yet or as he described it, "the nadir of this experience -- at least I hope so." I hope so too -- it hurts to see such pain and a person I don't know like the "I can take on anything" Rick. But we're settling in and I think after a day or two out, things will get a little better. There will still be frustration and I'm sure some pain but perhaps both will lessen. Lots of prayers for full healing going out!

I have so much to pay "back" by helping others who needed what we did. A number of wonderful friends brought dinner. Most of the time they would stay to eat with us, which was a great break in his action and good for him to see someone other than me. Another brought two meatloaves, so we'd have one for the freezer. Packages arrived with wonderful treats from a friend in Hawaii that we have never met face-to-face. Others sent restaurant cards so I could pick up food at Panera or Red Lobster. Our friend Mark sat with me in the surgical lounge. And we have received many greetings, comments, and good wishes -- many of which are from you.

I realized how much that means -- not just to me but especially to Rick, knowing that people are there and caring and want to help.

So, if you're still reading this, I want to thank you, too. So many of you have sent email, notes or written in comments words of concern and support for Rick. He sees them all and it means a great deal. Some of you have even sent cards directly to him and that pleased him no end.

Our lives are richer for this experience in many ways.

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