Thursday, October 29, 2015

On the eve of forever, a reality check

My husband requires constant supervision, 24/7 care. 

I know of people who leave family members this severely disabled in skilled nursing and walk away without batting an eye. Their beloved fill the halls of Happy Valley Rehab and Nursing. I walk amidst them each day. I say hello and ask how they're doing. I listen when they need a listening ear. I hold them when they need hugs. I acknowledge their pain.

I have not been encouraged to bring my husband home. In fact, there have been plenty of voices to the contrary. But he's coming home, because I believe even with his level of dependence and disability that he should be afforded the fullest possible life I can offer him.

Neuroworx is discouraging him from attempting to walk outside of therapy to prohibit developing negative habits that reinforce the left-neglect that simply won't budge, and isn't going to budge at this point. He's been told if he plans to walk, he needs to get used to discomfort. If his attempts feel stable and secure, Matt told him yesterday, he can bet on the fact that he's not using his left leg and relying on the right. No one's telling him he can't walk, but they're in his face about giving up on comfort. He must throw that notion out if he plans to ever ambulate on two feet. I sense we've hit a wall, and now I'm just standing by, cheering him on, hoping he'll find a way over it. But yesterday, for the first time, on the way home, he acknowledged that walking again may never happen. 

So I'm bringing him home, and we're going to figure out how to create a life around one-person assist and a wheelchair. Medicaid offers an in-home option after 90 days in a skilled nursing facility—New Choice Waiver. It provides 29 hours a week of in-home assistance, a hospital bed, a wheelchair, medication, and ADA implements to make bathrooms accessible. It is an option that provides the severely disabled with a home environment, plus care, if there is a family member willing to take on full-time caregiving. I am that family member.

When my husband's doctor advised me to expect to keep him in a nursing home for the rest of his life, it was because he wasn't going to ask me to sacrifice what it's going to take to bring him home. It wouldn't have been ethical. My husband has made it to the point in recovery anticipated by his evaluating physician in the hospital just prior to his discharge. He's not progressed farther. His mind is largely still sharp, but we have days that are foggy, in which impairment is noticeable, and since the seizure he's begun having marked memory lapses that I'm tracking as possible signs of onset dementia. 

The next chapter is not an easy one. But, like I told the Stake President because he had the audacity to ask four days ago during my interview for a living ordinance recommend, I am still in love with my husband. People who are in love do crazy, desperate things for the ones they care for. All I have left to spend with my husband is forever and time.

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