Monday, February 15, 2016

What a caregiver needs

While my husband was at therapy I spent an hour chatting with a 55-year-old woman who's been caring full time for her husband with MS for twenty years. Though I've only been at this ten months, our experiences are so similar I think I need to start writing about the caregiver phenomenon in greater detail. 

And I'll be meeting with my bishop on Wednesday to outline our needs and to formulate a plan for the elders quorum to assist me with Mr. PNU, because—wow. This is a very difficult job, and no, I'm not getting the help I need. Utah Medicaid is probably the lousiest Medicaid program in the nation. I went from 27 hours of in-home help on November 1, 2015, cut to 9 hours of respite/housekeeping help since January 1, 2015. 

The list of symptoms contained in the above link is hauntingly accurate for how I sometimes feel. Not all the time, but often enough that I definitely need added help soon. The problem that a lot of caregivers run into is finding people who are willing to help in the ways needed, rather than through means that those on the outside perceive as helpful. 

The woman I spoke to this afternoon asked me if I'd seen this video, which started making internet rounds about nine months ago. She asked my opinion. My answer was something like this:

"I think it's incredible that a ward would do the work necessary to keep a woman out of a nursing home or assisted living. It was well produced, as most Church videos are, but certainly doesn't detail the features of the job that are both necessary, likely to be unpleasant, and alarmingly intimate for neighbors to undertake." 

She nodded, "No, it certainly doesn't. And I think it's great a ward would help like that, but mine won't. I don't think they can."

What most people don't understand is that most function that they take for granted—activities of daily living—must be done for the people caregivers attend to. The only differences in this woman's job from mine: my husband can feed himself, her husband can operate a motorized wheelchair. Our spouses are one hundred percent dependent on us for everything from getting out of bed in the morning, peeing at night, clipping toenails and fingernails, assistance urinating and defecating during the day, shaving, showering, dressing, having meals prepared, getting in and out of vehicles, traveling anywhere, retrieving any wanted item, prepping for bed, taking medications, and any other activity or aspect of life that doesn't entail sitting in bed or in a wheelchair. We are living for two, all the while attempting to maintain autonomy and boundaries with our spouses in ways that most normal, healthy couples never have to grapple.

Next she asked me, "Do you read the articles in the Ensign about trial and adversity?"

This time my answer went like this:

"No, I don't. I learned a long time ago that almost none of what's in the Ensign looks like real life. It's not helpful to me. It may be to someone else, but it usually leaves me feeling even more hopeless and guilty for the complete human scope of emotion I go through in a day."

"No, it's not real life," she agreed. "I don't read them either, and I'm glad you don't. When caregiving became too much for me and I started going to therapy I found a number of counselors who encouraged me to steer clear of the Ensign for exactly that reason."

But she did reassure me that, even though I will wonder to myself a billion times over if I'll be able to keep going through the course of my caregiving, those questions are normal for those who take on this task. She reassured me that no matter what help people are able to give, I need to find a way to accept what they can do and make it work for me in order to keep going. And she promised to see me next week, and that no matter how hard it gets for both of us, she's always available to compare notes or to give advice. Today, besides sleep I never seem to get, that was what I needed most.

1 comment:

  1. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    Cerebral Palsy in Children

    Keep Posting:)