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babydramatic_1950) wrote2019-01-31 03:49 pm
LJ Idol Week 14: Firebreak
“She’s going home on the 29th.”
“No, please!” (a whisper).
“Other people need the beds more. People starting rehab. She’s done with rehab. Or else we need them for people who can’t be at home because they might hurt themselves or someone else; or wander.”
“But she will be alone…”
“No. That’s what we are going to talk about at the meeting on the 15th.”
“Meeting?” (a squeak).
“Discharge meeting. With me, to represent social work, the physical therapist, the lawyer I found you…”
“Lawyer??? Who can afford-“
“That’s what we’re going to talk about. The spend-down. Whatever she has…”
“About $30,000.”
“Half of it will have to go. So there’s the Medicaid eligibility lawyer – and then the clean out.”
I thought I was going to choke.
“A real clean out. A several thousand dollar clean out. Not ‘you move stuff around and hide it because the landlord is sending the fire inspector.’ (You told me about that incident!) I’m talking about professionals. See you on the 15th.”
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“Before anyone says anything I want people to know that I don’t want Betty to go home. I’ve been so happy with her here. It’s clean and there are always people around if she needs something.”
“Do you want to go home Betty?” Judy, the social worker, asked.
“I don’t know.”
“When she’s home she doesn’t eat and doesn’t change her Depends, and screams if I try to throw anything out; even an envelope.”
“This is going to be a whole new ball game. This is Shelly.” (Judy gestured to the woman sitting next to her.) “She’s an attorney who specializes in Medicaid eligibility.”
“We’re filing an application today.” Shelly smiled at me. “Here’s my business card. I wrote the fee on it. It’s a flat fee for everything needed to get Betty on Medicaid with 24 hour home care—and beyond, if you need anything after that from time to time. Like the annual recertification. You have power of attorney so you can write a check on Betty’s checkbook.”
“No!!!!” Betty let out a howl.
“You don’t have a choice,” Judy smiled. “These are your conditions of discharge. Apply for Medicaid with a spend-down. If there’s any money left it will go to pay a 24 hour home health aide until you’re approved for care through Medicaid. And the apartment has to be cleaned out. I saw the pictures your partner showed me…”
“You rat!!” Betty screamed at me.
“Or she could stay here…” I proffered.
“Yes, but you’d still have to shovel all that junk out of the apartment, anyhow, right?” Judy pointed out. “Better to do it with a pleasant goal in mind. Betty coming home. You have two weeks. Here’s a business card from the cleaning service. They usually charge about $800 a day for two men and a van.”
Betty started screaming.
“If I have to supervise this I am going to pay myself $100 a day” I told Judy.
“Good for you!” she said. “That’s part of taking care of yourself.”
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When the two men from “Home Sweet Home” showed up I knew they meant business. No more friends begrudgingly going through stacks of newspapers and junk mail, begrudgingly yet with reverence, because Betty would start crying and screaming if they started to toss something she thought she might want to read – someday. No more fights over whether or not she needed to keep an appeal from Yale, where she had been a student more than six decades ago (or from anyplace else.) No more paying a cleaning woman thinking she could work miracles and at the end of the day what you had were clean sheets and a clean sink and all the junk was still there, waiting to be negotiated over. No, these men would be ruthless.
A fire hazard. That was what the apartment had always been. Sometimes it looked a little better, sometimes it looked a lot worse. There were themes: unneeded furniture that she couldn’t bear to throw out, chairs stacked on top of chairs. Shelving. Brackets. Bags of soil bought for fantasies of window boxes (how old were these? 15 years or more?) Clothing that she had not worn in several decades and that did not fit. Old books. Piles of newspapers. Broken appliances that maybe someone could fix someday.
Of course there were precious mementos too. Things not to throw out. I found albums of photographs she had taken when she was in her 20s: photographs of LBJ’s inauguration and of freedom schools in the South. Portraits of her friends, many of whom I had met. Pictures of us on vacation. Pictures of Betty as a little girl. Letters from her mother and father. Bits of sweetness to make the mentally backbreaking job less hateful. Soon, instead of resenting this mission, I realized how privileged I was to be reviewing the fragments of more than eight decades of a life.
And even when I thought I was angry, I wasn’t really. Because this would be the last time. Oh I had “helped” at least eight times, the last being over two weeks of annual leave that I took because the landlord had threatened her with eviction over the “Collyer* type situation.” That had been around 2002. I said “never again”. Oh, and it hadn’t just been me. Friends had tried. There had been paid help. Getting Betty to relinquish anything was as exhausting as the scenes between Anne Bancroft and Patty Duke in The Miracle Worker.
Five days later ten van loads of shelving, unwanted chairs, broken appliances, and piles of magazines and worn out books had been removed. Sixty bags of shredded papers had been taken to the basement. Five bags of clothes went to Goodwill. The remaining bookshelves were organized prettily (one of the cleanup men was an artist and had a strong sense of aesthetics) showcasing Betty’s photographs and knickknacks. The kitchen countertop had a surface large enough to cut vegetables on. The dining table had nothing on it but a phone and a pad. And the floor! The dining room floor, yes, it was old and battered, but what a beautiful expanse of space! A paper- and wood-free oasis to run through from the bedroom on the way to the front fire escape if there was ever a fire and no one could get out the front door.
The living room became the aides’ room. Betty came home with a hospital bed, so the aides got her old captain’s bed. The living room closet was now empty, so they could hang up their own clothes. There were still books, and albums of Betty’s photographs from the 1960s (the very old memorabilia went, carefully preserved and much loved, in boxes in the hall closet) but these were neatly put on top of an end table, next to the aides’ bed, available for me to show people. I showed them to Betty when she came home. She had forgotten about them.
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After the fact, Betty was not angry that I had had her apartment cleaned out. She does not know that where she came back to from the nursing home is the apartment she has lived in since the 1960s. She thinks I brought her back somewhere new. Except to go out the front door on a gurney to a doctor’s visit (or to the emergency room) she does not leave the bedroom because she cannot walk and is afraid of the wheelchair. She does not know she has a dining table that people can sit at, or that her photographs have pride of place (although occasionally I have brought them in to show her, and one or two were later put in stand-alone frames so that they could sit on the bookcase that faces her bed now).
When they are not doing things for Betty, the aides lie on the large captain’s bed watching tv or talking to their families, in the now-spacious living room with the large windows looking out on a tree-lined residential Manhattan street. Betty’s pictures adorn their walls. Some mornings I sit at Betty’s dining table and handle her “business,” pleased to now have a sane and serene place to do that, flanked by huge photographs of her parents and grandmother.
Sometimes I put my head down on the table and weep for the new, beautiful home that Betty will never know she has.
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[*The Collyer Brothers were two American brothers who became infamous for their bizarre natures and compulsive hoarding. For decades, the two lived in seclusion in their Harlem Brownstone at 2078 Fifth Avenue at the corner of 128th Street where they obsessively collected books, furniture, musical instruments, and myriad other items, with booby traps set up in corridors and doorways to crush intruders. In March 1947, both were found dead in their home surrounded by over 140 tons of collected items that they had amassed over several decades.]
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She'll turn 90 this year, and like your Betty, she's not fully aware she is in, what I must say is a very nice Assisted Living facility, and she's happy there.
It has to be heartbreaking, to watch her slow decline. If you accept hugs, here's a huge one of support. Thank you for sharing this. ✌🐭🐁🎀🐞
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Here memory care is the only option. My mom got a “ cost of living increase last year (this year too) put us just Over the income limit for special assistance so now I’m paying to supplement to keep her in care because I can’t manage her at home. So care costs $3600 a month - this is a “cheap” place it goes up from there. If you qualify for special assistance it costs $1530 a month. If you make over $1550 a month- you get nothing. It costs $3600. If you get cost of living increases they usually raise the income limit but not anymore. She gets $1600 from social security and my dad’s pension. Can’t decline the pension which is the $100 that puts her over. I’m burning through savings I can’t replace for her care. She has no assets. They made me sign over her life insurance to pre-pay a funeral in order to qualify. I’m not happy with her facility. It’s changed a lot in the last two years. We had to go meet her st the ER today for a UTI. I guess at least they caught it before it was worse.
Sorry, I probably shouldn’t have said all this. It’s a hard and horrible disease. To lose someone, so slowly. I’m all there is. Standing here at the crisis of what the heck do I do when the money runs out - because it’s my future that has no money left too.
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She is in a Medicaid approved memory care unit. But when her social security increased it put her over the income limit.
The care facility basically said well you are screwed you can pay private pay rate or bring her home.
We are in NC. Here they place into memory care assisted living not a nursing home. The limits change if/when you qualify for skilled nursing needs (and now that I’ve said that I need to ask someone who knows better - she was briefly on hospice two years ago (just 6 months) but she got better. I don’t think she needed hospice care at all to be honest but it provided her with more skilled nursing and helped a lot.
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My husband is also prone to this as well. He and his aunt are/were a lot alike in many ways. I had to get on him bad over Xmas week when we were off work. He had clothing piled high on the dresser. You couldn't see the mirror. He doesn't get rid of old items easily plus he never puts things away.
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I'm glad that things worked out for Betty inasmuch as the house got cleaned and she had somewhere safe to go, but that's a sad ending in its own way, too -- going home and not realizing that "home" is where you are...
This is a very good piece.
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Oh my, such a nightmare and so stressful for you, after having fought the battle for so long and tried to do it again and again. Stressful for Betty too, because she clearly is attached to her 'stuff.' The fact that she thinks she's in an entirely new apartment probably helps-- it doesn't look 'home' with things removed. It's a new home, and that may really help.
I recently finished a novel with a hoarder, and it just wore me down to read about all of the stuff, stuff, stuff, junk most of it, and the character's inability to see the reality of it.
Does it seem Betty will be all right now that she has an aide and that her apartment is no longer a firetrap (or a place to constantly trip over things)? Will you be all right, and not tied too much to care-taking at the expense of living?
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Our brother-in-law was the primary caretaker for his wife, who has early-onset Alzheimer's, and he reached the point where he needed a hip replacement and the day-to-day challenge of also caring for her was just too much. Even with someone coming to the house to help, she reached the point of needing 24-hour care, and he just couldn't manage it.
It sounds as if you have the help you need to be able to provide the love and emotional support and overseeing of Betty's care, which is really nice. :)
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I have a problem myself. I am a horder. Although people don't realise, as my flat appears very clean and tidy - so I'm not an 'all over the place' horder but I have this huge cupboard/small storeroom that everything gets hidden away in and piled up into!
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