The Hardest Decision I've Ever Made

I knew it was the beginning of the end when she fell here at home and fractured her pelvis in two places.

She has now been in the SNF for two months, rehabbing from her injuries, and although they have nearly healed, her psyche and her cognitive status have not. Even worse, this incident not only broke bones, it broke her spirit.....and life will never again be the same.

Sometimes I watch her from the door of her room as she sleeps, wondering how it all came to this. In my mind's eye, I see her as she appeared in her senior portrait, a soft light in the beautiful gray eyes which held all the dreams and aspirations of a young woman. I idolized her back then, and in many ways I still do, even though we are both well past fifty and I know the worst about her now.

I know that she is self-centered and can be manipulative. I know that she has driven away virtually every friend she ever had, angered her children to the point that most of them wish to have nothing to do with her, and even pushed me to the brink of insanity by scaring me half to death with her repeated health crises, too many of which were brought about by her addiction to prescription painkillers and anti-anxiety drugs. In fact, overmedication was the cause of her recent falls......including the catastrophic one that ended life as she knew it.

But I also know her kindness and her goodness of heart. Hers were the first welcoming arms I knew; she was the one who fed and diapered and bathed me when Mother didn't feel like it. She taught me my colors and shapes by age three, how to read by age four, and how to tell time before I ever started kindergarten. She was also the only person other than my husband who supported me during the awful time after our second child died, and she's always held my hand when I've been in the throes of a mental illness that she cannot possibly understand.

That is why it kills my soul to be the one who had to decide "what to do with her" after her last day of therapy, which is this coming Wednesday. I spoke with both the social services coordinator at the SNF and her Medicaid case manager last week, and I made it clear that returning home is not an option; instead, she will be placed in adult foster care until an assisted living facility can be found for her.

Understandably, she is anxious and angry, and even though all I want to do is love her through it all, she is not allowing it. I don't blame her. I feel like the world's biggest jerk right now. I can take care of others; in fact I do it for a living---why CAN'T I take care of her when she's taken care of me in some way for almost fifty-five years?

Because, as both my husband and psychiatrist have had to remind me, I'm too close to the situation to do it effectively. I can't take her meds away from her and administer them to her the way they do at the SNF, even though that is clearly in her best interests. Her cognitive status has declined so much in these past few months that sometimes I don't know if she really remembers much of anything now, despite the fact that she's not even close to seventy yet. I'd also be afraid to leave her by herself for more than an hour or two, because she'll forget accidentally-on-purpose that she took her pain meds and then take some more, or because she'll fall and lie on the floor until God-knows-when.

And I know this sounds selfish, but my husband and I are hardly spring chickens ourselves, and this is supposed to be OUR time to relax a little and enjoy our life together.....if we don't do it now we might never get the chance, since neither of us is in particularly great health.

Speaking of whom: he's tired of fetching and carrying for her the way he has for the past year and a half---to say nothing of picking her two hundred pounds up off the floor---because she wants and needs almost everything done for her, including laundry, cleaning, taxi service, linen changes, even meals in bed. She is very high-maintenance, and of course her kids won't help, so we're stuck with all of the chores. We are also tired of paying for everything, including her cable sports channels and $300 monthly electric bills because of the oxygen converter. She doesn't pay us rent because she "can't afford it", while her Social Security somehow manages to cover her online shopping excursions. Of course, it's our fault that we didn't demand she pay us at least something for her upkeep, but it's too late to worry about it now.

But of course it's not just that, nor is there any single thing that forced me to do what I did. It's the entire picture---both clinical and emotional---that I can't handle anymore. I'm worried about her, but I'm also concerned for my spouse's and even my own well-being as well.....and I have to admit that the past two months have gone far toward restoring our marriage and our sense of oneness. We didn't realize how much energy her care had been costing us until we suddenly weren't having to do it anymore. I sleep SO much better at night knowing that she's not stumbling around upstairs in her room, wide awake but drugged, and that she's in a place where people are watching over her and keeping her safe.

So why do I still feel like a terrible person? Duty. Loyalty. Family. We don't put our loved ones "in a home", we take care of them until they pass on. It doesn't matter that I'd probably wind up in a psych unit if she came back, or that my husband is sick of serving as a caregiver to both of us; she's family and we've always stood by our own.....until now.

Now I understand the agony that so many of my residents' spouses, children, and siblings go through in making such an excruciating decision. And now I share with them the overwhelming guilt, the thought that "it's not supposed to be this way", and the cry to God or the universe for an answer that doesn't exist: why MY loved one?