The Hardest Decision I've Ever Made

  1. I've walked folks through this process literally hundreds of times: a family worn down by the care of their elderly loved one finally comes to the conclusion that they can no longer take care of her at home. Now it's my turn......and the cost is almost more than I can bear.

    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?
    Last edit by Joe V on Aug 2, '13
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    About VivaLasViejas, ASN, RN Guide

    Joined: Sep '02; Posts: 26,949; Likes: 44,636
    RN and blogger extraordinaire; from OR , US
    Specialty: 20 year(s) of experience in LTC, assisted living, med-surg, psych

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  3. by   TopazLover
    Viva, Thank you for sharing this soul wrenching journey. I think many of us nurses are so used to the role of caregiver that we do not realize how much we give to our family beyond what most families can endure. When we reach that breaking point and look back it is in amazement at how far out on that limb we went, and at what cost.

    I suspect Mr. LasViegas is some special guy,too, to have stepped up.
  4. by   ElvishDNP
    Thanks so much for sharing this story, Viva. Your frustrations, heartache, and also your deep love for your sister come shining through this moving account. You do the best you can do, and let your friends and family walk beside you. Knowing what you do about ALFs/LTC will be so helpful in finding her the best placement possible under the circumstances. My prayers and thoughts are with you. You are a good sister and friend.
  5. by   rdsxfnrn
    All I am going to say is I know exactly how you feel............... the guilt can be overwhelming. Just trust in your heart and know you ARE doing the best thing for all involved. You need not trade your life for hers............... Hugs to you and the mister, and stay strong!
  6. by   rn/writer
    Hugs to you and the mister and the sister.

    Contrary to popular opinion, guilt isn't an emotion. It's a legal condition attached to a particular offense. A person isn't just guilty. They have to be guilty OF something. Looking at your situation through this lens, the only thing you're "guilty" of is wanting to do the best by all of the parties involved. You're culpable of giving your sister what she needs (non-emotional, round-the-clock supervision in a place that will help her stop hurting herself and others) instead of what she wants (free rein to feed her appetites at other people's expense). And you're guilty of wanting to preserve your marriage and your sanity. You selfish thing--NOT!

    Guilt, in the legal sense, is a judgment of wrong-doing, and your situation doesn't meet the requirements.

    What you're experiencing is regret--sadness that certain decisions had to be made and carried out. Sadness that your sister has sustained damage that you can't fix. Sadness that your needs (sanity, stability, safety) and her wants (unhealthy appetites, unreasonable loyalty, danger) rub up against each other, and choices have to be made. Sadness that you can no longer take care of her without everyone in the equation suffering and perhaps sustaining further damage.

    Regret is understandable. Mourning the loss of control and the ideal picture of growing older with your sister makes sense. But guilt--the condition of having committed wrong-doing--does not apply in your situation. You toughed it out with your sister far longer than most people would have.

    Love her where she is. Don't expect her to accept your decision without first trying to push all your buttons. When you recall her being the more capable person in your childhood, realize that you are now the big sister and you're taking care of her in the best way you know how.

    If she had the capacity to thank you, she would. But she doesn't, so I will. Thank you, Marla for doing what needed to be done. Hugs.
    Last edit by rn/writer on Jul 24, '13
  7. by   Ginger's Mom
    Oh my, you were coping with your illness,work, and this! How did you remain sane? You will stiil care for her but you and your husband have to take care of youselves first. Great decision for all!
  8. by   VivaLasViejas
    Oh, my goodness.

    I'm sitting here reading these magnificent responses to my post, and once again I'm filled with gratitude to those of you who have given me so much encouragement while gently setting me straight on some things (e.g., guilt vs. regret). None of you 'know' me in the IRL sense of the word (except for Karen and Miranda, with whom I've spoken on the phone at times), and yet you've freely offered me some badly-needed perspective at a time when I've never been less sure of myself.

    It's what I love most about AN, and why I'm still here after almost 11 years......this place is home, and you all are part of my family. Thank you, and God bless you all.
  9. by   nurseprnRN
    I've often said there's an advantage to being a member of a demographic bulge. All of us Baby Boomers are coming up against this now as our parents --and some of us ourselves-- come to need more care than can be had at home. Thank god there are places where care can be had.

    If you'd told me six months ago-- no, three-- that my mother would be looking this good, I'd have spit in yer eye. She was delirious and demented and stoned out of her gourd on drugs related to metabolic derangements, and fell often at home. One day the neighbor found her on the floor, having been there for an unknown period and sustained a pelvic (acetabular) fracture. More drugs, more stonededness, and more then from the surgery four months later to replace the acetabulum and femoral head. She'd lost a lot of weight, to below 100#, and had her house sold out from under her when she had to go to ALF, and I wasn't sure she'd make it there, either. Saw her the other day and she doesn't use the walker at all and only uses the cane a bit when she goes long distances, never in her apartment. She's still pretty forgetful but pain-free, alert, and active. Go figure.

    So I stopped feeling guilty of being a bad daughter and for wanting to spend time with my DH. And if she died tomorrow I would have no regrets. This too shall pass, dear Viva, like bleeding always stops, sooner or later. {{{hugs}}}
  10. by   VivaLasViejas
    That's a great success story, GrnTea!! Thank you for sharing that---it makes the impossible sound very possible.
  11. by   NDE Experience
    Thanks for sharing that is a very heart warming story