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Venting - will contain TRIGGERS
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melly2210 posted:
I know I've been posting snippets of the stuff going on, but here's the basic background.

S's mom fell on 3/8 and broke her hip and her shoulder. She spent about 8 days in the hospital where she had a partial hip replacement and surgery (pins, plates and screws) on her shoulder. His sister, who is her surrogate, left for Europe for 10 days on 3/10. So S hopped a bus from Ocala and hauled butt to Tampa to be here in his sis' absence. I followed with a permanent move to the Tampa area within the week. Since arriving, I've pretty much handled most of the advocacy his mom has needed. S doesn't handle the whole thing well and he's constantly butting heads with his mom.

They tranx her to rehab on 3/16 and within hrs there was already a problem there. She insisted on having her room moved. Rehab moved patients to accomodate her demands. By 3/19, there were issues with her meds, her care over the weekend, her showers, etc. Again, I stepped up and addressed the concerns. Got it all taken care of. S's sis arrived back from vaca on 3/21. Totally unconcerned with the situation, she is more worried about a copay for rehab than the fact that her mother is refusing to eat the food provided or cooperating with the care plan set in place. Conditions continue to worsen. I take a step back so not to step on family toes.

In the last week, she has decided she no longer wants to be there and wants to go home. She's nagged and whined and complained to and about everyone there - from the nursing staff to the admin to the therapists to the drs. So today we find out they're discharging her on Mon. 16 days of rehab.

To get into her home, she has to traverse unpaved ground full of tree roots, climb 4 very steep steps, and be able to navigate a 3' hallway about 25 feet to get to her bedroom and bath. She has no way to get to dr appts (S & I don't drive and sis works). To get up out of bed in rehab she has to have the hospital bed in an upright position and uses the rails to pull herself to a sitting position. She will be in a standard bed here. Won't let us move furnishings to accomodate her needs to prevent further falls.

So S isn't coping well with her being 10 miles away and pulling the crap. And I am fully expecting her to worsen that situation when she arrives home. I'm a caretaker naturally, but feel trapped now. I can already see the writing on the wall. She's not ready to be home, not without 24 hr care. I fear S is gonna loose it and go off the deep end landing in a CSU situation where I am his surrogate. And I know I am going to have to haul his mom in and out of bed, cook, clean, bathe. I am loosing it myself. I feel so completely screwed here, and no matter how I look at this, I don't see a way out.

When I tried to address these concerns with S's sister last night, she dismissed them. Said if she couldn't handle it, that she'd have to go back to rehab. Ummm...we couldn't get them to keep her in there. How are we going to get her to go back? She's family. And we already buck heads. I was this close to going off on her this morning while she was on her latest tirade about having to wait until Mon to come home. I am already out of patience with the situation. And I'm concerned about my own health in this situation....yet I cannot seem to explain this clearly enough to anyone else, including S (who is bordering on his own major episode). UGGGH... Sorry for the length.

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson
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ddnos responded:
Hi Melly,

Sounds like sticky situation for sure, one that I don't envy you being in, but hope that you will be able to make good choices for both for yourself and your family.

One thing that stuck out for me as i was reading is where you said you are a caretaker, but feel trapped now. The one thing about caretakers is that they tend not to be able to set healthy boundaries and so the line between enabling and true helping/caretaking is blurred. Invariably, the caretaker-type gets used a lot because, after all, won't the caretaker take care of things when no one else will? The sister involved won't do anything because why would she when she knows you will? She may not normally be the greatest helper anyway, but with someone else taking care of things, that gives her all the more reason to not be involved.

So who appointed you to be the one who takes care of everything and everyone in S's family? You did, right? How did they get along when you weren't there? THey survived, didn't they? What if you weren't in the picture now, who would take care of S's mom? Do you really think that no one would? If you do, it's because right now, no one will and that's because they know that you will. Is that right? Heck no! You should not have to be doing this by yourself, but the fact that you are is your choice, not theirs. You need to learn when to back off and let someone else take care of things even if they don't do it they way you would. Does S's mom have Medicare or a Medicare Advantage Plan? If she does, then she would qualify for In Home care for free because she needs help after being in the hospital. I know that for sure becuase I've had to look into that extensively with my mon's husband. In fact, that's typically the only way Medicare will pay for in home care. The only thing she would need is a referral or authorization from her doctor and within 24-48 hrs, they could have someone in there. If she doesn't have Medicare (which I can't see why not) but if not, then someone needs to tell her that she HAS TO go back to the hospital until she is well and able to take care of herself again. You can't be the one who does that.

Those are my two cents worth You are not the only one who can take care of things, and if you do, you will ALWAYS be the one who does everything because that's what you are teaching them, i.e. that they don't have to do anything because you will. My mom is the exact same way and has been all her life, and know what? She's miserable for it because she has long forgotten how to take care of herself and she doesn't know her own feelings because she's too busy worried about everyone elses. It's quite sad, but she's so ingrained in that mindset that she'll never see it or change; so I long since given up trying to stop enabling everyone (especially her husband) because she doesn't know anything else. But you are young and can learn to use your caretaking gift wisely - and it is a gift!

Debbie
Forgiveness is letting go of the hope that the past could have been any different --Unknown
 
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mercygive responded:
Dear Melinda

Have you or S's family spoken to the nurses about temporary in-home health care for his mother? I'm sure have — just asking. You might be the most experienced and kindest caretaker in Tampa, but I don't think you should be the one to step into all of that responsibility just because in-home health care costs may exceed the family budget. My mom inquired about that for my grandfather and here the average cost is about $8000.00/Mo/24-7. If you volunteer to slide into free servitude there would be no reason for S and sis to make alternate arrangements for their mother. I think you should step back and be a supportive friend for S and sis while 'they' put their heads together and decide on the best way to deal with the situation and make arrangements to help their own mother. They're probably more used to her tirades anyway and you don't want to be on the opposite end of that if you don't straighten her bed just so and make her dinner just so, or get blamed if she gets hurt while you're lifting her in and out of the bathtub adding injury to injury. Step back and get out of the middle. That's how you get out of it. It might be easier to handle S's stress than his mother's tirades.

I'm sure it's easier said than done. I'm just trying to imagine my brother engaged/married and our expecting his new wife to be the caretaker for our mother. True she would be a part of the family, but I think it would be so cruel on both our parts to expect that. Ya know!

Do you have your own permanent residence in Tampa? I just wanted to know if you had a 'room of your own.' - V. Wolff
I'm not afraid of storms, for I'm learning how to sail my ship.
Louisa May Alcott
 
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mercygive replied to mercygive's response:
Oooh! Faux pas Spankie Spankie!

V. Woolf
I'm not afraid of storms, for I'm learning how to sail my ship.
Louisa May Alcott
 
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melly2210 replied to ddnos's response:
I've sat back and not said a whole lot about what's happening once his sister got home. I've addressed the concerns about her needing more than a couple visits a week from home health. And they both seem to have the whole "she made her bed, so let her lie in it" kind of attitude. Wonderful if it was some dumb minor thing, but she's not mobile. So...let her just rot in her bed? Wouldn't that ultimately have legal implications, and since we are living here (which we did in preparation of her coming home FULLY rehab'd for a few weeks) wouldn't that reflect directly on us?

I get what you are saying about the caretaker thing. I do. But S can't even shop the lingerie section of a store without having a mini melt-down, let alone see his mom naked in the shower or help her off a toilet. And the woman just wants to be home, so staying with her daughter temporarily isn't her option either (although it's the best available option - no steps, wider walkways, walk-in shower, etc.

Basically what it comes down to is 3 stubborn, pig headed people. One who just wants to be home and doesn't/won't understand the implications of her choices. And two who want to take the "she made her bed, so let her lie in it" attitude, neither of which understand fully the care that this woman is going to need. I've done everything I can to make them see, but I got told "well if she can't handle it she will have to go back." This, S discovered late yesterday, is not an option. She burned that bridge but good. They won't take her back.

As for home health, they're setting that up. I am predicting based on her attitude in the hospital and rehab that they'll be "allowed" a week's worth of visits before she tells them to stuff it and how dare they tell her what to do in her own home.

I am doing my best to push for changes, but I've been unsuccessful so far.

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson
 
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mommaange1 replied to melly2210's response:
My mom was in the hospital for a long time and was sent to rehab before she was ready. In rehab she was very uncooperative to say the least. They refused to release her no matter how much she whined. They told her she either stays in rehab until she can function on her own or they would release her to a nursing home, but she could not go home. She decided she would stay in rehab a few more weeks and didn't need so much help. When she came home a visiting nurse came to see her. And she then did really well.

I wish you luck cause u are in a bad position

(((Hugs)))
If We Couldn't Laugh, We Would All Go Insane :)
 
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bipoet001 responded:
Is she on Medicare or private insurance? With most rehab facilities where the majority of the payment comes from medicare or private insurance, They will not release the patient until nursing and social services gives an okay to do so. In my area, a team comes and tours the home that the patient is going to and will measure doors and arrange the situation or declare it unfit. The payer not the patient has the last say. In Florida, there are many home care options including county home health care nursing that comes each day for a few hours. These services are paid for under Medicare. Again, the payer not the patient has the last say, so neither she nor you not others can dictate any circumstances. If you do not have a Power of Attorney for healthcare and property, have one drawn up.


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