Do you ever want to run away?

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I assume the answer is yes for many of us. As the only child and health care proxy for my mother, I have been in hell for the past year or so. First she had a stroke, was in rehab, then the horrifying longterm care NH unit at the same place. That was ghastly for her, so I saw a lawyer and arranged 24/7 home care, which is now paid for by Medicaid. That is a huge blessing, as is the fact that she is part of a house calls program, so her dr and lab technicians come to her home to care for her.

A few months ago, she started getting UTIs, and I have had to make the decision to call 911 and get her to the ER (she can't get there any other way when she's ill). She now has her 4th UTI in 6 mos, and I am about to crack. The first one landed her in the ICU in septic shock. I know she needs to go back to the ER, but we were just there 3 weeks ago!! (Don't bother to suggest UTI cures, please. She has a huge kidney stone which has to come out or these will keep happening. Surgery is the only option - not great for someone her age - 84. I was looking into planning it but then she got another f-ing UTI.I have talked to numerous urologists, so I know the options at this point.)

I love her SO much and I am pretty sure I will have to get her back to the ER soon, but part of me just wants to take a plane to the other end of the world and let someone else deal with all of this, plus make the call about whether it's time to go back to the ER. I have missed so much work and am so unbelievably stressed. She is not in any pain and somewhat confused, so she can't weigh in. She says she's fine and not to worry. I have to take charge. She is so vulnerable and will do anything I say - which is not the way it was, ever, until her stroke.

I'm actually MAD at her for getting another UTI so soon - how crazy is that? I'm used to it happening every 8 weeks, not 3 weeks! I simply cannot deal with this anymore, but I can't just refuse to take her to the hospital and let her die. She is not Ok with that, nor is she OK with going to the hospital again or having surgery - so, yeah. Her dr was there yesterday and said she was fine and took blood and urine (which is bloody).

What if I DID live far away? I wish her aides would make the call and get her to the hospital. I wouldn't even mind meeting them there, but I cannot stand the whole 911 thing, and then waiting in the ER for 100 years. It is so traumatic for both of us. UGHHHHHHHHHHHH.

25 Comments

Xinabess,
What is it that the ER can do for your moms UTI that you can't have done at home? That may be a stupid question and I'm sorry if it is. What if you put her on palliative care or hospice? Could you ask your doctor about this to see if she would be able to get the care at home that she is getting at the ER? It sounds so hard for the both of you as things are set up now. I'm sorry. I wish I knew something that would help.
Xina, i would have run away by now.

Have called any hospice organization?

Can't the aides sit with her in the ER?
I personally believe that hospital Emergency Rooms make the experience as hellish as possible to discourage people from using them. I know it's had that effect on me. The hours and hours of waiting in that tiny curtained cube - you peek out and it appears that the entire ER staff is gathered behind that big central desk area in the middle, shooting the breeze. At least that's how it seems as you sit there with every one minute s-l-o-w-l-y ticking by as if it's 100. It's enough to make me want to blow my head off!

But as for your question - "Do you ever want to run away?" Every day, my dear. Everyday. 
It is great that she got to come home on Medicaid. I believe that NY is the only state where medicaid pays for full-time at home care. Lots of us envy that part of your story.

But the UTIs. Yikes! Running away seems an appropriate fantasy -- as long as you don't do it, of course.

I have the same question as 97yroldmom. Why is ER necessary? The test can certainly be done from home. And isn't treatment a medication? Why would it be necessary to treat that in a hospital? Yes, it definitely needs treatment.

Her doctor took blood and urine. Have you heard the results of the tests with those? If they reveal a UTI won't the doctor order treatment?

ERs are traumatic for old people. Heck, you don't have to be very old to find the experience traumatic. I would hope that the house calls program would help eliminate the need for ER.

In any case, I sympathize with your frustration and your desire to run away! Of course you love your mother. Wanting to run away has nothing to do with that!
I agree - ERs are no picnic with a demented old woman raging with a UTI but how can a home visiting Doctor observe blood in her urine and then say she is fine???!
Lab work can be done immediately in the ER - do you have the results back yet from the home visit?
If I recall, Xina needs mom to be seen in the ER because the only treatment that works for her mom is several days of IV antibiotics. Her mom has a " stag horn stone". Insurance won't pay for IV antibiotics in the home.

I had suggested calling hospice a few posts back because it seems to me that perhaps hospice could get approval for the IV in home. Maybe not.

It does seem like she's between a rock and a hard place.

Maybe rehab in a safe for a covered period to keep the UTIs at bay long enough to get her strong enough for Surgery? Is that an option?
Yes, the antibiotics she needs are the IV ones she can only get in the hospital. She has PT at home, Barb, so a rehab won't help.
I can't recall if you talked to a hospice orgs or not?
I think I would work with her towards the surgery. 84 is not that old (anymore) and it might help immensely. My parents continuously amaze me with their capacity for recovery from extreme surgeries in their 80s. Otherwise I would ask for her to be treated at home with IV as the poster above mentioned. Can you be persuasive with the Dr about ordering hospice?
Dear xinabess,

Sending you love and hugs. Boy, do I hear you. It is tough carrying the burden of managing an elderly parent's care. It is a struggle and so frustrating. I don't blame you for wanting to run away. In the last year of my dad's life, I just go angrier and angrier. I wish I could have found another way.

I know you are trying very hard. But maybe its time for mom to go to a nursing home then.

Keep the conversation going (or start a new one)

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