To treat or not to treat

Taken on my last trip to Galveston with mom: Galveston Island Pelicans
Taken on my last trip to Galveston with mom: Galveston Island Pelicans

On Monday I got the dreaded call from assisted living (AL): mom fell again. She had a big bump on the back of her head. The AL nurse feared her hip was broken. So this time, unlike the last time, I agreed to allow her to be taken to the ER to be checked out.

Jenny, long-time friend and employee of my father’s business, agreed to hold mom’s hand at the ER. Meanwhile, I googled things like:

  • elderly dementia candidate for hip surgery
  • prognosis elderly dementia hip surgery
  • prognosis elderly broken hip forgo surgery

Fortunately, the x-rays and CT scans of her head, back, and hip all came back negative. But, not surprisingly, Mom has another UTI. Which is why she fell. They seem to be coming faster, now. She had the last one in March, just before her 80th birthday. Which means she’s gone just sixty days this time before another took hold. Each time another infection pops up, I wonder if this one is the one: Is this the one that will overcome her failing immune system and resist all antibiotics?

The emergency room doctor prescribed Bactrim and sent mom back to AL. Well, actually he wanted to send her to a rehab hospital, which I vetoed. Instead, I asked that therapy be ordered via home health. I don’t think my sister was happy with that plan. She’s more the treat-the-crap-out-of-her-irrespective-of-the-mental-toll mentality. I’m done with that. A tension is emerging between us.

So mom is back at AL, and the Bactrim isn’t working. Mom is progressively getting worse. She’s weak. Confused. She can’t walk. She can’t feed herself. The AL caregivers are overwhelmed. I hired a helper from a home health company. The culture should have been back yesterday from mom’s trip to the ER. We were anxious to get the results to know what antibiotic to switch her to. The sooner we get the right antibiotic in her, the hope is, she’ll start feeling better and the permanent effects will be less. As it turns out, the ER doctor did not order a urine culture. All of us (the home health nurse, the AL nurse, the physician’s assistant, and me) exclaimed in unison:

What the fuck?

OK, maybe I was the only one who used those exact words, but the sentiment was the same with the others.

When we learned the ER doctor failed to order a culture, home health did so yesterday. And so we wait another seventy-two hours to learn which bacteria has invaded mom’s urinary tract this time, and which antibiotic is indicated. Since the oral Bactrim the ER doctor prescribed clearly isn’t helping, the physician’s assistant ordered injectable Rocephin, which did the trick in March, and one other broad-spectrum antibiotic, while we await the results.

The physician’s assistant called me last night with an update. She sounded down. Discouraged. She told me the infection has hit mom hard. Much harder than past UTIs have. She brought up hospice. I asked her if it was time. She said we should wait for the culture and find out which antibiotic is indicated. But it could be mom now has an antibiotic-resistant UTI that will require a hospital stay, perhaps weeks of antibiotic therapy, and then a several-week stay at a rehab hospital. So the question may become, do we put mom through all that, or call hospice and let nature take its course?

I know what my sister would do. Treat treat treat. But what is best for mom? Do we keep putting mom through hospital stays and follow-up stints at rehab hospitals? Do we keep taking her away from the comfort and familiarity of her AL apartment? Not to mention away from her cat, which is her only consistent pleasure. When do you say, stop? Enough?

We’re in a gray area. Dementia. Diabetes. And chronic infections. All slowly and inexorably pushing mom toward the end of her life. When do you stop treating the infections in an attempt to keep her here a bit longer? When do you stop putting her through the stress of hospitalizations? And even if the treatment is successful, to what end? A few more months of doing OK, until the next infection hits? What is best for mom? Hospitalize her and pump her full of antibiotics? Or call hospice?

I’ll leave for Houston a little later today. I’ll spend time with mom this afternoon, and throughout the weekend. Maybe I’ll find an opportunity, a moment of clarity, to ask mom what she wants. I wish she could tell me. Three years ago, after my dad died, mom  said she didn’t want to go on living without him. My sister got angry with her. I wonder if she’d get angry with mom if she told us she’s ready to die now.




  • My grandmother, on her 85th birthday, and a rather good day it was, declared, she was tired and ready to go. It took her 11 more month, till a stroke left her “caught inside herself, unable to communicate with the outside” – and thankfully she had made a patient declaration so the doctors were stopped to feed her artificially, she got to a hospice and died there ten days later. It wasn’t nice, mind you, she got painkillers, but since she did not want to be fed, she starved to death. The only option of euthanasia that is open to relatives and only if the will of the patient is declared clearly.
    So, whatever you do, it won’t be an easy path. My thoughts are with you. Nobody can decide what to do but you – and I hope your sister sees the light and how much your mother suffers.


    • From what I’ve read, starving to death is quite a peaceful way to go. My mother has a directive, no heroic measures. No feeding tube. No life support. But antibiotics to treat bacterial infections is a gray area. Hospice will give oral medication, but not IV antibiotics. I hope my sister sees the light, too.

      Liked by 1 person

  • tough decisions, after all the ‘information’ go with your heart, Hospice will help you and your family as well, during and after, they are a support team…best to you!


    • I’d go with hospice now. But since they won’t do IV antibiotics, if that’s what she needs, we’d be forgoing treatment for the infection. Maybe she won’t need them, and we can switch her over to hospice care without making the decision to forgo treatment for the UTI. My heart says, stop!


  • Been there with multiple patients, and been there with my mom. With my mom I experienced so much random anger at, I now realize, not being able to fix it. I was not super pleasant to all of her care-givers. Whereas when I was in the doctor role, I was able to tap into my compassion and wisdom without getting clouded by angst.

    Do what you know in your heart your mother would have wanted. Your sister is acting out of fear and guilt. I completely understand her desire not to let go, to keep control. But it sounds to me like you have a more balanced picture. Be gentle with your sister even if she’s not gentle with you, as best you can, and forgive her and yourself for when you’re not. Be good to yourself. I have complete confidence that you can and will make the appropriate decisions.

    Liked by 3 people

    • Thank you, Josie. I absolutely understand my sister’s motivation. I just need to figure out how to show her a different perspective. Gently. My mom is so weak. Sometimes she’s communicative. And sometimes she gives me a vacant look. We’re hoping the different antibiotic they started today will help. And through it all, my sister is insisting she go to rehab. My mother would not want rehab. She doesn’t want to work hard any more. She wants to rest and pet her cat. Maybe tomorrow she’ll feel better.


  • Hard to like this post. I hope time with your mother helps you to choose the best path. I agree with Josie’s comments above, especially the bit about ‘be good to yourself’.

    Liked by 1 person

  • I remember the roller coaster ride so well. I still have PTSD from her last weeks – I was wrestling with the IV antibiotics or not. It was so hard to see her suffering and fighting the battle was not a winning situation. I opted to let her go.
    My heart goes out to you – I’m with you 100%.


    • Oh, Judy. It’s so difficult. Roller coaster is an apt description. Mom wasn’t doing well at all Friday night. But by Sunday she was doing better. I don’t know how we find the strength to make these decisions. But we do the best we can. And that’s enough.

      Liked by 1 person

      • Just reading your words brings it all back to me. It is exhausting and filled with twists and turns. I’m sure this past Mother’s Day was especially poignant. I remember thinking every occasion “was the last one”- that next year she’d be gone.


  • It is a very difficult decision, I can only suggest you to follow your heart.
    Some years ago my aunt was in the same situation: my cousin was on a business travel, the doctor came, asked me to take a decision, I decided to let her go, she died 10 days later, while sleeping, she was smiling.
    Enjoy every moment with your mother!


  • I feel for you as I’m in almost the exact situation. My mom, who will turn 82 this November (if she makes it that long), has now been on hospice since February, and I’m pleased with my decision. She, too, lives in assisted living; luckily it’s only about a half hour from my home so I can see her as often as needed. Hospice was recommended to me when she was hospitalized in Feb and x-rays found another aortic weakness near the repair of the aortic aneurysm from 2012. The rationale was that it would save her having to go back and forth to the hospital for small things (like UTIs, which she gets quite often as well and coincidentally, has one again right now). The hospice nurse sees Mom weekly and keeps me updated via phone, plus I can call her with questions at any time. Mom has really enjoyed the extra “perks” of hospice like music therapy, too. Unfortunately with her dementia she doesn’t understand that she’s on hospice, and still wants to go home or “live with Mom” as she says (who’s been gone since 1970). That won’t change, but at least it’s nice to have some support in addition to the AL staff (who could be exasperating in the best times). I would definitely recommend hospice in your situation, just my two cents for whatever it’s worth.


    • That’s so nice your mom is close. I wish mine was. I’d love to be able to spend more time with her. I wish I’d moved her when my sister told me last year she was moving much farther away from mom this coming September. But I decided to wait until then, and now moving her would be too hard on her. If her AL decides they can no longer handle her, I will move her to a nursing home close to me. If not, two and a half hours each way isn’t too tough. Except I can’t visit during the week. I’ve heard great things about music therapy. I know mom would love that. That’s great your mom is avoiding those stressful hospital trips. Hang in there, Maggy.


  • Hola Ella,

    I think you are in one of life’s most difficult possible situations. And I wish I had some words of wisdom for you, but I think I lack the life experiences for this one. However, what I will say is that you need to fully realize the difficulty of your situation (I think you probably have), and try not to be too hard on yourself. You are handling things from a position of love, and caring for your mother, and wanting what’s truly best for here, not for the consciences of your sister, the doctors, etc. So you will make the correct decisions, even if you look back later and wish you had done something else. Does this make sense?

    Just let your heart guide you and you won’t go wrong.

    I wish you the absolute best possible in this tough situation. Hang in there, girl.


    Kim G
    CDMX, México
    Where a friend’s aunt recently died of diabetic complications, and he was in similar circumstances to you.


    • The time we spent together this weekend was wonderful. It helped a lot. Listening, even though she has dementia, made a difference. She can still let me know what she wants.


  • The advice, I and others, would offer should not matter a whole much. And, neither should the written healthcare directives matter. What does matter is what is in your heart on what is right, what is proper. You will need to be comfortable with whatever decision you arrive at. Your sister, she knows you are the final arbiter – let her speak her peace and be done with it. In the end, you will know when is when.


    • Thank you, David. I’m starting to understand my mother knew what she was doing when she made me her POA. I’m the “feeler” out of the two daughters. And right now, I’m feeling a lot. I came away from the weekend knowing my heart is leading me in the right direction.


      • With my mom, it didn’t matter all that much she didn’t have a POA nor any kind of advanced health directive. My dad was her primary caretaker and he was determined to care for her till the day she passed. He knew what to do, relying on all of his experience and knowledge he acquired as an Army medic in 20+ years. Dad encouraged mom to hang in there, to eat, and everything else. He knew AL, skilled nursing and hospice wouldn’t be the solution in her final days. There are a lot of conflicting thoughts going through your mind but don’t let it cloud your judgment.


        • Wonderful your dad could care for your mother through the end of her life. My mom took care of my dad almost until the end. With my mom’s mobility issues, it makes it impossible for one person. I’m feeling clear-headed today. Hopefully that sticks with me!


  • At the same-ish point with my dad, he is 83. He is also suffering from demensia, but it has not taken over completely, so he has clarity some days others he is packing suitcases and wanting to go to his parent’s home. Reading all of this was hard but also enlightening. I am much like you and I think I will go into similar directions if time comes. Whatever happens and decisions you make, I wish you and your sister peace in your hearts.


  • Cat and mouse

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