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Sep 18: 5AM. My SO comes running up the steps and tells me my mother has been in the bathroom for an hour. So I run downstairs thinking the worst. There she is fully clothed and sitting on the closed toilet. I honestly thought I would find her deceased. She tells me (slurring her words) that she can't get up. I get her up, walk her and her rollator to the couch and have her sit down. We were debating to call an ambulance or not. Last time it took over a half an hour as there is none in our town. We decided it would be quicker to drive her ourselves as she appeared to be stable. We get her to the ER and she and I sit from 9 in the morning to 2 in the afternoon before a room is free. While we're waiting for the doctor, I was thinking that I'm sitting here watching her die. I texted my sons and let them know what was going on. At 6 in the evening, they decide to admit her. She stays in the ER overnight. Sep 19: 8AM. She has been admitted. They continue to give her Myasthenia Gravis infusions plus saline IV to hydrate her. This is all day. Sep 20: 1130AM. Couldn't get there until then because of previous appts. She's awake, little slurring, but is bedridden. She has severe diarrhea. No sooner is she changed and she needs to be changed again; eats every bit of food. She's drinking water, but still has MG infusions. Sep 21: 8AM. Her third day. Have made arrangements with nursing home to take her; it's their last room. Sep 22: 8AM. New doctor comes in and says she stays. I'm going crazy because I was all ready to take her. Center calls me and lets me know room is still hers. Sep 23: 8AM. Diarrhea has slowed, she's eating good, still bedridden. She's going but not until 4. We beat the ambulance to the rehab center. Her roommate has taken 3/4 of the room, as she has been by herself for sometime. Squeeze Mom in space, she's weighed and changed. She lost 3 1/2lbs. Intake person calls me and let's me know that even though he wasn't there, he left a packet for me to start working on her being there permanently. Inside I'm dancing. She may be there for only 100 days, but I am going to enjoy every one of them. I had several options on where to put her but the closest one to us is 1/2 hour away. I know that my family will not stir to come see her, as they haven't in the past 5yrs, so only my children know where she is. This will give me time to nail down the Elder Care lawyer, traveling notary and carry out her wishes to the letter. I did surprise myself because sitting in the ER the first night, I teared up, which I thought I would never do for such a horrible, narcissistic mother. BTW, I did do a little jig as I was walking out the door.

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Please pls realize that should Mom file for LTC Medicaid (it is this specific Medicaid program that will pay for her custodial care costs) that it has a required Share of Cost (SOC) to be done by your mom. Families and POA are often gobsmacked by this just as they are taken aback that a “100 days” Medicare paid rehab realistically is more 3-5 weeks at best.

SOC will mean that once she files for LTC Medicaid almost all the monthly income paid to her (e.g. her SSA $) will become a copay to the NH. The NH gets this $ in addition to whatever $ the State LTC program has set as its daily reimbursement rate. All she will be able to retain is a smallish Personal Needs Allowance, which varies by State. So if your mom has debts, has CCs, has life insurance premiums, has a mo bill for a preneed burial policy, she realistically will not have any $ to pay those bills once on LTC Medicaid. If she still has a home or a car, LTC allows for her to retain them as exempt asset for her lifetime but due to the SOC no $ to pay their various costs. Basically they default on all debts unless their POA or family choose to pay them. & se that continue to own car or home, then deal with the required attempt of Medicaid Estate Recovery done in whatever form by your State.

If your mom has more assets that allowed, she will have to do a “spend down” of her assets before she becomes LTC Medicaid eligible. If this is her, think about what debts would be good to pay down or pay off now and before that SOC requirement has to happen. Lots,of us on this forum have done spend downs, so ask ?s of that is your quandary.

Most States have income max @ $2829 and nonexempt asset max @ 2K. If either category is more, she will be considered “over resourced” and ineligible till she gets under the max. Just what has to happened depends on the type of income & asset. The site has articles on all this. Good luck and stay organized!
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I had to laugh at the bra thing and you putting her clothes in sets. I did the same thing. But I am lucky I have a daughter who has worked in LTC facilities for over 20 yrs. First as an LPN and then an RN. I would ask her what I should complain about.

The bra problem...Daughter asked me where I put them. In her side table with her socks. That was the problem. Aides dress from the top down. They don't see the bra till they get to the socks. By then the resident is dressed and they have to go to the next resident. I put my Moms clothes in sets on a hanger so the bra went there too.

I have seen aides in scrubs with longsleeve tops underneath so weird they don't dress Mom that way. Clothes in someone elses closet, pet peeve of mine. Labels were put in by the facility and no one seemed to know how to read. By putting Moms clothes into sets I was able to know what was missing. I went thru the other closets. Each aide has at least 10 residents they must get up and ready for breakfast.

Daughter says to pick your battle. Nothing will be done for Mom like you did it. I was ready to have Moms hair cut short because the aides never combed it right, I wanted her to be dressed nice and her hair done right. She had Dementia, she should have at least that. After my daughter took me thru the day of an aide, I understood so much more. The Nursing staff rarely does hands on. So you need the aide on your side. Ask, don't tell.
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Thank you to everyone that understood what I was trying to put into words. As for those that warned me about the 100 days...you all were absolutely correct. She had 30 days and then I got the word. The nursing home is working really hard to keep her and I have already signed most of the paperwork for them to keep her. I go to see her every third day. That way I have a couple of days to do what I want and am enjoying them even if all I'm doing is housework. When I go in to visit, she is either sleeping or eating. She doesn't want to talk, doesn't want to go out of her room in her wheelchair, so what I usually do is check her closet and make sure her outfits are there and set up to make it easier for the aides to dress her. Check her bureau to make sure she still has plenty of diapers (until she has run out of what I had already bought her), bras and pants. I'm a little POed because the company received the 2024 award for best nursing facility, but I don't know if this particular home was included. I have found two pairs of pants in her roommate's closet (both their names begin with P) and they aren't taking the time to dress her the way she wants to be dressed. My mother has never gone without a bra until now. They put on her scrub tops without putting a long sleeved shirt on her first. I even listed what she is to wear on her closet door, so they have no excuse, plus with the shirt on the same hanger as her scrub top shouldn't be that hard to figure out. I had put her Halloween pumpkin T-shirt, long sleeved orange sweater and a scarf with pumpkins on it together back in September. When I went to see her after Halloween, I asked if she got to wear the pumpkin top. NO, she did not and it wasn't worn because it would have been on the bottom of her closet. On top of that, I had hung a sign on the three pieces to let them know this was for Halloween. Still on the hanger with sign, scarf, scrub and sweater. I went and talked to the nurses' station. Someone was supposed to get back to me on all this. If I'm doing something not acceptable, they need to let me know. If they're not doing it correctly, they need to be told to do it right. Other than that, it is a wonderful facility and I have had two "family" meetings with the staff and I was told to bring up any concern and it'll be explained to me or the situation corrected. My mother's birthday is the 6th and we're taking her out to lunch. I requested they have her dressed appropriately...we'll see when I get down there. I will be very polite but get my point across. Does anyone have any other suggestions on how to deal with the Aides' Supervisor? Mom's appetite is great and she will participate in activities somewhat. She usually tells me flat out that she wants to take a nap and she can't because I'm there. It doesn't matter if she was already awake or wakes up when we walk in the door. The most we have stayed has been 30 minutes, most of the time it's only like 15. The longest was when I was labeling her closet with instructions and hanging her grandchildren (my children) and great grandchildren (my grandchildren) pictures up on her wall. Of course, I didn't get them completely straight up and down but it still isn't bad. So far everyone has given me a "looks good" as I take pictures of everything before I leave if I put anything new up or take stuff down.
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It's nice to get compliments & be appreciated for what you do. I am glad that gave you a boost.

What's the aim now?

Have a break while Mom is in rehab? Then what? Home again with Mom hopefully as well as she can be & you rested & revived?

PS "I ended up having to lift her in and out of the car".

If you wanted a break, why join your Son & Mom for lunch?
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Update: My son and his wife came over from Woodbridge today to take Mom out to lunch. I ended up having to lift her in and out of the car, feed her and pick up the food that missed her mouth before I took over. Believe it or not, it didn't phase me in the least. She was on her best behavior too. Mom never argued, was docile and did everything she was instructed to do with only one repeat per. What to me was hilarious, she took one of her fried shrimp and dipped it into her coleslaw and the second one she ate, she dipped it into her applesauce. She started to eat the shrimp tail, but I got it from her just before it went into her mouth. Those were new idios to me. It is such a relief to have her in the rehab center that the stuff I ended up doing for her didn't make my anger go from zero to flat out The Flash. I would add that my son gave me the best compliment in the world. He told me he was glad I was there because he would not have been able to handle her by himself. He said he was impressed of the way I took care of Mommom. That made my day. You hear it from the staff, but to me it's just words. Coming from my own family was so joyful. I appreciate the comments from the caregivers on here and as far as filling out the application for LTC, the director and the business manager said I did a really good job putting together most everything needed. I only need two more years of bank statements and the letter from the funeral home proving Mom made provisions for herself right after Dad passed away. I'm probably setting myself up for a fall, but I believe in the director and I'm going to stay upbeat for as long as I can. If the other flipflop falls, then I'll have to face reality, but right now, I'm floating.
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Brandee again

I hope you get the 100 day respite.
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If the extreme diarrhea continues more than 3 or 4 weeks. (We're talking 8-10 episodes of explosive diarrhea in 24 hours) Day after day for 4 weeks. Then I'd ask her doctor about Microscopic Colitis.
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Youve been coping with a lot and now got a respite so its only natural to feel relief. The person wasnt pleasant you mentioned so your emotions feel pleased to be rid of her. Going forward that may not be very healthy for you bottling up those feelings, neither to your mother, as they may spill over to negative behaviour to your mother (however justified)
You have mentioned some severe conditions you are copying with - maybe its time to look into options of your mother living in proper care facility and you just visit. Speak to the centre/doctor and find out your options. Sounds like you need me time and to get on with your own life.
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I'm very happy for you, but am a little concerned that you are counting on Medicare coverage for 100 days in rehab/skilled nursing. That almost never happens as it's very rare for a person to be certified as medically eligible for that long. 100 days is just the max for coverage in any benefit period, not a guarantee of coverage. Moreover, Medicare would pay in full only for days 1-21, and even then people have to fight for continued certification of necessity sometimes. Here's what it say on the federal Medicare website regarding skilled nursing/rehab coverage:

Your costs in Original Medicare
In each benefit period (2024), you pay:
   Days 1 - 20: $0. (Note: If you're in a Medicare Advantage Plan, you may be charged copayments during the first 20 days. Check with your plan for more information.)
   Days 21 - 100: $204 each day
   Days 101 and beyond: All costs
Part A limits SNF coverage to 100 days in each benefit period.

The fact that the social worker has already given you a packet for a permanent stay is a good sign. I suspect the packet includes an application for Medicaid LTC coverage. They seem pretty sure she will meet the medical necessity requirement, but she also has to meet the financial requirement in terms of assets and monthly income.
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I would not take her home other than as a hospice patient without further treatment intended.

For yourself, and for others, if you don't want to sit in an ER all day long then call EMS. They go directly into a cubicle while you wait, which is the reason that you DO wait. If it is critical call EMS.

Glad she is in care.
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Well we can all only hope that your 100 days will turn into your mother remaining there the rest of her life, as that is honestly what is best for all involved.
Keep on dancing!
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Uarew6, congratulations, 😜, I'm sure you have mixed feelings, when you said you teared up, then did the jig. Enjoy your 100 days , that will lead you into Christmas. Oh part of me is jealous 😂
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