So Back to Me…

The care home my sister is recovering in has been testing staff and residents for COVID weekly. A staff tested positive this week and, though there was no contact with residents, there was with other staff so the whole place is quarantined until December 23. Quarantine means residents don’t leave their rooms and visiting stops.

I was worried about the effect the isolation would have on Maureen. One characteristic of Prader Willi Syndrome is “Behavior Problems.” I can’t find a place to link where these are succinctly and accurately described. There was a time when the police were called routinely in response to Maureen’s “behaviors.” There is at least one sibling who will never regard her with other than anger and resentment because every family holiday for years and years was devoted to Maureen melting down. She was loud, violent, intense, stubborn, obsessive. Most adults with PWS are on some kind of anti-psychotic medication, for calming more than for hallucinations. It only works to a degree.

In recent years Maureen has calmed down a lot. I can’t remember the last time she had a full blown melt down or needed physical restraint. Because she’s managed better in her current home the police haven’t been called in at least 20 years and her violence has been directed at inanimate objects rather than at people. Anxiety was a guaranteed cause of behaviors and the holiday season, from about Halloween through New Years, was always a very anxious time.

Some of the change may also be due as much to aging as to management. We know there are changes with age in PWS but, as I think I’ve said, Maureen is probably one of the 20 oldest people known to have lived with PWS and, between that and the fact that it affects individuals differently, we’re all still learning,

My first concern when I heard about the new quarantine, though, was for her behavior. Would boredom and isolation lead to anxiety and how would a melt-down play out in this new environment? How would this staff respond. Who could tell? No one had told them to call me when she gets upset. I can talk her down.

But, as it turns out, the activities the dedicated therapists schedule several times a day, sometimes in person and sometimes on the home’s internal TV station, have not stopped with quarantine. Two days a week is still Bingo at 2:00 with therapists in the hallways to help anyone who needs it and to remain alert to calls of “Bingo!” Maureen even won a round the other day – two miniature candy bars was the prize. It was exciting. Bingo the high point but there are other games, too and movies and other programs on the internal TV channel as well as on all the usual cable channels. There are hymn singing and religious services, time with chaplains and even the “grief group” Maureen has joined to talk about all the people in her life who have died.

Normally she calls me six or eight times a day, often just to tell me she’s bored. Since quarantine she’s only called once a day. In all fairness, one day her phone was broken. Today she called six times between 11:00 and noon because I didn’t answer. Finally she left me a voice mail to tell me she knew I didn’t like her to keep calling but she had to call again because she’d forgotten to leave a voice mail. Her message to me: “This is your sister Maureen. Please give me a call.” Turns out she’s getting a special meal today and some presents for a small Christmas celebration. At the time of her call she didn’t know if the special meal would be lunch or dinner and I still don’t know because she hasn’t called back.

In the morning I’m sure she’ll call to tell me she’s waiting for her breakfast.

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