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.
ArtWStone
12/12/2020 @ 12:00 pm
It’s so hard to have family one cares about in such a predicament.
This was heart-breaking except for the part I laughed at: yelling “Fuck you Chelsea” at someone named Haley.
$.17.
Ridiculous.
Jonna Connelly
12/12/2020 @ 3:11 pm
My brother and sister say I should take the business rate. Especially since there’s almost no chance the fund will be audited.
Myriad
12/12/2020 @ 12:43 pm
So sorry to hear this – what an on-going concern, esp. with set-backs and recalcitrant patient.
Jonna Connelly
12/12/2020 @ 3:13 pm
Recalcitrant patient – I love it. She likes being taken care of too much. The constant struggle must be tiresome.
12/12/2020 @ 1:11 pm
Thank you for sharing. Considering how difficult and frightening I imagine your sister’s illness is and has been, your essay is filled with light and love. I wish you all well.
Jonna Connelly
12/12/2020 @ 3:14 pm
Thanks. She’s enjoying the activities. Right now she’s watching “It’s a wonderful life” and eating popcorn.
12/12/2020 @ 2:34 pm
Jonna, this sounds like no matter what you do, the experience will be a painful one for you. So do what you can manage, even if it does not feel like enough, and take good care of yourself.
Does the nursing facility have a support group for family members? Maybe they don’t, or maybe in covid times it’s a zoom, but you might ask if they offer any family support. My mom spent the last couple years of her life in a memory care facility, and I found their support group pretty helpful, more for the tips the other members offered than the facilitator.
Sorry that you are having to go through this.
Jonna Connelly
12/12/2020 @ 3:17 pm
I haven’t heard anything about family support. The social worker at the home is very supportive and is my older sister. So that’s helpful. She seems to be the only one in the place with a status like hers – mostly it’s very old people.
12/13/2020 @ 11:51 am
Your sister’s facility is one dedicated to people with her condition, is that right? If yes, things might be happening among the residents that you don’t notice. In the memory care facility where my mother was, the residents ate together. Although I could not understand anything they talked about, every now and then, they’d break into laughter. I suspect my mother was having moments of fun she had not had when being cared for at home.
It’s a grim hard situation though. I remember flashing smiles until I got in the car to drive home, then cried so hard I could barely see. The focus tends to be on the chronically ill person, and it can feel selfish to have your own strong feelings. That’s where I found the support group helpful. Maybe there is something online for general caregiver support, if not your sister’s specific condition.
koshersalaami
12/12/2020 @ 3:11 pm
As are others here, sorry you’re going through this. Not remotely easy.
For what it’s worth, thanks for telling me about the $0.14 for charity. In normal years, I travel a round trip of about 1200 miles to play at a benefit concert.
Jonna Connelly
12/12/2020 @ 3:19 pm
Thanks to all of you I don’t think I wrote this so much for sympathy as I can sort things out by writing them.
kosh, glad to be of some help. 😉
koshersalaami
12/12/2020 @ 3:24 pm
I get what you mean by sorting things out as you write them.
I so wish I had this convenient editing technology when I was in college. It would have made things so much easier. I edit as I write like mad.
Jonna Connelly
12/12/2020 @ 3:40 pm
YES! I remember writing or typing a paper and then cutting up the paragraphs and rearranging them with the stapler. Modern times!
Alan Milner
12/12/2020 @ 4:59 pm
First of all, I wouldn’t know how to pressure anyone to post more. I do try to encourage people to use the site because that’s what I built it for….to be used.
That said, please feel no pressure, but I like to kill several birds by recirculating the same stone over and over again.
Back on Open Salon, we had a tremendous support group. When I traveled, around, I tried to meet other OS people whenever I could. I have been trying to recreate that experience ever since and so I do challenge people to use the site.
The way I see it, you can still post everything you write here, then post the same articles as links on Facebook, etc. Why? Well, you just demonstrated one difference,. You were able to post a link to a Wikipedia definition for an unfamiliar word. I have never seen that done on BindleSnitch before although I knew it could be done. Maybe other people have done the same thing without my noticing.
But, you’re going through some very difficult things right now, and you need to take notes. You also need support. Within the bounds of privacy, which only you can judge, your observations may be helpful for others going through similar experiences while others who have gone through similar experiences may have insights to offer you.
OS had its share of fueds and flounces but we were a core group of caring people. I know that most of us are still connected via Facebook but I think there is a special value in having a smaller puddle to hang out around.
koshersalaami
12/12/2020 @ 6:15 pm
And some of us aren’t on Facebook. I’ve got ADHD, diagnosed in my forties, and my wife tells me if I go to Facebook I won’t come out. And now I get to feel morally superior for not being there, even though that’s not why I’m not there. Also because I have for several years not lived where I worked and that’s not something I wanted most of the people I do business with to know. How that happened is another story.
jpHart
12/13/2020 @ 2:46 am
Heartfelt, this.
Blessed is the caregiver….surfaces so sensory overload is ‘less-taxed’. Anaerobic genomic aberration ought be more medicable. Many of my caregiver buds wind up with a triage ‘reflex’
due to grind of the gritty grid and are compelled to move on to avoid the matrix of despair as well as ‘exhausted all efforts.’ My yeoman’s observation [perhaps] is that Maureen ultimately yields to her ‘known’ abnormalities and is compelled to create private drama as a survivor mechanism. Curious if staff has time and passion to delve into the propensity of alternative curative routes such as oxygen and musical therapies. Also wondering if our audio literature medium would provide circumstance of cerebral adventure as an alert mechanism to sight fresh horizons. We probably don’t know what a ponderous recording of Milton’s Paradise Lost would foist from the depths of aberrant distinction. And have we reviewed time absorbers—landscape puzzles Lego edifices—you know—stuff like back-handing a tambourines out\of\doors targeting that hula-hoop?
Love is continuity.
Thank you J.C.
Jonna Connelly
12/13/2020 @ 9:58 am
@jp Hart – Maureen’s inner drama will be the subject in the future. Alternative therapies would likely be at her expense which is not impossible. And, if I understand your meaning, I’m taking her a Yahtzee game today. Thanks for your kindness.
jpHart
12/13/2020 @ 3:09 am
*apologies for the extraneous article ‘a’ afore tambourines—probable Hawthornian slip. Likely light deprivation’s jingle jangle. Have I mentioned 2020 is always hindsight?
Rose Guastella
12/15/2020 @ 5:23 pm
Hi Jonna. It was heartbreaking to hear about, but I very quickly realized that none of this is really new- it’s been your whole life, as well as Maureen’s. You write about it with good humor and compassion. And I can see your determination not to allow her- or yourself- be a victim of the overwhelming bureaucracy you are up against.
Jonna Connelly
12/15/2020 @ 6:41 pm
Hi Rose. Nice to see you here and your flowers! Thanks for your kind words. Three weeks on a ventilator was all new, believe me. Now the whole place is locked down on quarantine until the 23rd. A staff tested positive. The fun just won’t quit!
12/16/2020 @ 11:48 am
Jonna, that’s a crummy development. Can you facetime or zoom with her? We did that with my dad. It was weird and unsatisfying for us, but I think he kinda enjoyed it, and enjoyed ‘knowing’ how to use new technology.
Jonna Connelly
12/16/2020 @ 11:57 am
We can facetime but she’s not really comfortable with it. She calls me eight times a day at least and I’m after the rest of the extended family to call her, too. The activities therapists are keeping the fun going to a degree – bingo 2x a week, she loves that!
12/16/2020 @ 12:33 pm
If she’s into bingo, does she enjoy those bingo good luck items?
I was surprised how good Dad’s nurses were at the technology, he did not have to be. They carried ipads and knew how to use them. One would start the call, then plunk it in Dad’s lap saying don’t touch anything. They also played spotify playlists for him, music from the 50’s.
In MA they are trying to get every nursing facility resident vaccinated by next Monday…are they doing it similarly in yours? Once those folks are taken care of, I hope things will noticeably change.
Eight times a day….you need some reward for that. Peppermint foot cream or pie or something.