What’s Going On in My Life

I’m hearing there’s been some pressure on members of this forum to post more than they do. Or to post at all. No one has bothered me about it and a personality flaw of mine dictates that I have to tell myself it’s because no one wants me to post or they just don’t notice me. Rationally, I tell myself that can’t be true so I’ll bite. I’ll attempt to post something I know about. Something original if not deep. I can’t be deep right now. I have practical concerns.

What’s going on in my life now: So I’ve mentioned before, I have a sister who’s 16 years younger than I am and she’s afflicted with something called Prader-Willi Syndrome, the most prominent symptom of which is hyperphagia (“an abnormally strong sensation of hunger or desire to eat often leading to or accompanied by overeating … does not subside after eating and often leads to rapid intake of excessive quantities of food.”’) Her IQ is somewhere in the mid-70s though her logic and reasoning skills are exceptional. I’m one of her two legal guardians. Our brother is the other one. She lives in a group home dedicated specifically to PWS.

Or she did live in a group home. Right now she lives in a nursing home.

Recently she contracted pneumonia and was hospitalized (October 7.) She was in ICU and on a ventilator and massive doses of IV antibiotics for about three weeks. It was scary. I was the only one allowed to visit her and that was with strict restrictions. Being on the ventilator required her to be on propofol which rendered her semi-conscious.

Finally they found the right antibiotic (the infection was anaerobic, it turns out) and bam! She was done with the hospital and moved to the nursing home to recover from three plus weeks flat on her back.

From the PWS she lacks muscle tone despite a regular exercise routine. In the past year or so she’s developed a fear of falling and often refusing to stand, using a walker and at times even crawling around her house. There was no particular known reason for this and it took us awhile to decide to start seeing various medicos trying to find a reason before giving up and turning her over to life in a wheelchair. She was scheduled to see an orthopedist the day she went into the hospital.

It complicates everything that very little is known about PWS and aging. Maureen may be one of the 20 oldest people ever to live with it. In the world. In history. Until now they have died early, largely from the effects of obesity and, sometimes, given half a chance, ruptured stomachs. Further complicating things, every single person with the syndrome seems to exhibit symptoms differently and it all seems to change with age. For example, she’s been actively monitoring her diet and knows that they’re giving her 1200 calories a day, up from her usual 1000 because her weight is down to about 12o. She’s 4’10” Her explosive, even violent temper episodes seem to have calmed down but her tendency to confabulation may be increasing.

At least the confabulation can be fun and she’s employing it regularly to assure me she’s trying to walk and exercise.

In the nursing home, the idea was to do physical therapy to get her fit to go home where she has to be able to walk into the bathroom as far as the toilet, toilet herself, and walk from the toilet to her shower (where there’s a chair.) For everything else she can use a walker.

Physical Therapy and Occupational Thereapy began in the first week out of the hospital. At first both therapists focused on leg exercises they could do with her in bed. That went well. Then they had her stand, supported by both therapists, and pivot to sit in a wheelchair. That all went well. Now comes the time to stand, supported by both therapists again but this time by means of a belt they held on to so Maureen would feel like she was standing.

Mostly she screamed, swore, (repeatedly bellowed “fuck you Chelsea” to the therapist named Haley,) and demanded to sit.

It all led to the therapists deciding it wasn’t working and medicare cut her funding for therapy. I don’t understand the reasoning and am plowing through bureaucracy to appeal the decision. They will try again after Christmas, they say, when she will have been off her feet for 12 weeks or more. From what I’ve seen so far they will try more of the same. Infuriating.

This is my occupation now. I’m trying to keep detailed notes on everything because I never know when it will be necessary to be able to document what has happened, if only for purposes of appealing some bureaucratic decision or another. That’s time consuming. I’m going to document my visits to her because I’m burning gas at a crazy rate and my brother has agreed to reimburse my mileage from the trust fund our parents left for her.* After the appeal, I’m back to making medical appointments for her, hoping we can find a physical reason for the difficulty she had standing and walking before she got sick. Stay tuned. I may have more to tell.

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* Do you know that the IRS allows mileage of $0.17 for medical and moving reasons, $0.14 for charity and $0.575 for business? That’s ridiculous.