Friday, May 15, 2009

When Do You Help?

Skip likes me to read to her my most recent posting(s) and any comments I've received. Last night, I read her the two I'd posted earlier in the day, including the slippery slope musing. That prompted a discussion about washing her hair. I said something to the effect that she could wash her hair, it was physically within her capability. She thought about that for a bit and agreed that she could, though not always. (Of late, when she's done with her shower, she can be quite wiped out and fatigued, so adding hairwashing might result in finding just a limp noodle in the stall when she was done!)

This got me to thinking more about a concept I'd been thinking about adding into the slippery slope post but didn't feel it really belonged there. And, that is, when do you help? When you consider the array of care I provide for Skip every day, some tasks are absolutely required and others are not.

Skip can't get into or out of bed on her own anymore. Even with a transfer board, she does not have the physical strength and capability to get from one spot to the other. Any transferring activity, then, must be performed by me. Some things she can't do because of external barriers combined with limited physical capability, such as make a meal. We have not modified the kitchen to make it very accessible for her. That was never a priority because her mobility and fatigue issues made meal prep impractical for her.

Like hairwashing, though, there are things Skip could do for herself that I do for her instead. Say she wants some popcorn as a snack. I'll bring her a bowl and the bag of popcorn and then she'll take it from there. If the kitchen was set up to store snack food and bowls at a reachable level for a wheelchair user, she could take care of this herself. She'd also have to move the rolling table I place in front of her each day when she settles in at her spot in the living room. When she returned from the kitchen with bowl and popcorn, she'd have to get back in position and reposition the table so it fit around her wheels again, all without pulling out the laptop power cord. While it's conceivable she could do all this, we've taken the more expedient approach of me bringing the bowl and snack when she asks for it.

When you look at the mix of tasks I perform each day for Skip through the lense of "could Skip actually do this for herself?," you'll find the answer is sometimes (often?) "yes." But we've chosen "no." Why?
  • Safety. Because of Skip's lack of mobility and lack of hand strength and feeling, a number of tasks that she could do could sometimes end in failure and a possible fall or other harm to herself.
  • Impatience. Being able-bodied, I can do most things faster. I'm impatient. When Skip had more mobility, I often would transfer her from wheelchair to bed rather than wait for her to use the transfer board because I didn't want to wait.
  • Caring. Face it, I'm not in this role just because Skip needs it. I like the opportunity to help her and show love and caring through that help. That can make it easy to help her out when she is struggling and I know I can do the task more quickly and easily.
  • Barriers. While our house is pretty good from an accessibility perspective, there are still barriers we could have removed with modifications. We've chosen instead to deal with those barriers by me helping Skip.
  • My capacity. In the early days of MS, I wasn't doing too much to help, so it wasn't as big an issue to take on a task in support of Skip.
  • Limited energy. This is the number one reason why I perform tasks Skip could do for herself. If she washes her hair, that uses a lot of a very limited resource: energy. If she spends her limited energy allocation on something like that, she'll have less ability to handle all the personal care tasks at the sink after her shower. Or, she'll have less energy to handle silverware when eating breakfast. And so on. I think we both look at her energy level as a finite store for the day. Every time you draw on it, there's that much less to use later on in the day. We husband that resource carefully. Skip doesn't have much reserve, so we need to be thoughtful about the things it gets spent on. As a result, I try to help out on basic tasks (like washing hair) so she has some oomph left for the things that she values more and that add quality to her life, like typing on a keyboard when she's at her laptop.

I realize from writing this post that we've made a lot of choices over the years to shift tasks from Skip to me in support of her day-to-day existence. By choices, I mean, she could still do many of these things, but we've decided I'll take them on. We need to continuously monitor the level of support she needs and make sure we've got the right division of labor in place. That way, Skip can maintain some independence and sense of competence and I keep from feeling stretched beyond my capacity to give, that I feel love in the giving and not burdened by it.


Anonymous said...

It's so important to stop and look at how things have changed. It's been a slow buildup that goes unnoticed, until it becomes overwhelming. I can only imagine that it is scary at times.

Hopefully we can help with the energy reserve, only to smoke our faces off Skip, whilst installing a new gazebo perhaps?

Additional Cranky To-do: Find a gazebo.


Cranky said...

Skip is looking forward to cee-gahs on the patio with you!

Gazebo-raising might be a worthy to do item during your visit. I'm noodling over other options as well. :-)

awb said...

The transfer of duties is often a subtle change. I am at the point where a lot of things are being relinquished to my wife. We haven't actually talked about too many of them, for me it's the beauty of long term relationships, you don't have to talk. It's days like today I realize I miss me.


Patrick @ Caregivingly Yours said...

Cognitive impairment was always in a neck and neck race with physical as Patti's MS progressed. Once I HAD to start thinking for her the need to help accelerated dramatically with the activities of daily living. For example we maximized our kitchen for her use from a wheelchair yet one unforeseen downside was her causing a fire on the stove while preparing lunch. Physical and cognitive limitations prevented her from quickly dealing with it.

You raise excellent concerns and the thinking that goes into them.

Caregivingly Yours, Patrick

Cranky said...

Andy - we, too, don't talk a lot about the hand-off. Things just subtly transition from Skip to me. I assume the "me" you miss is the pre-MS me. I bet!

Patrick - your comment makes me realize the experience of caregivers to someone with MS is unique just like each individual's case of MS. Thanks for your compliment.

Anonymous said...

Have you come across the 'spoon theory'. It sounds like number one reason is a matter of 'spoon saving'.