contributed by Nancy Christoff

My daughter, Nicole (37) has PWS and has been living independently in Senior housing (a five-minute walk from my home) for about 10 years. 

We’ve created a mini tailored group home without the group. I don’t know if a cat counts in the headcount – LOL.

Nicole gets lots of day & evening support from me and 4 personal care assistants (PCAs) that I hire (paid for by Northeast Arc & DDS).  She also attends a Day program three days a week, with door-to-door transport.

This is Nicole’s home support:

Administrative Manager (That’s me).

1. – Handle Nicole’s general & financial administration;
2. – Schedule and transport/accompany Nicole to medical appointments;
3. – Procure/interview/hire PCAs (paid for via Northeast ARC & DDS);
4. – Procure Nicole’s frozen low salt/low calorie evening dinners;
5. – Schedule, transport & conduct her aquatics therapy sessions at Spaulding Rehab.

Main PCA (1)

1. – Handle all Nicole’s hands-on personal care, walking sessions, etc;
2. – Perform Nicole’s housekeeping, fresh food shopping & prep, laundry, etc;
3. – Transport and accompany Nicole to some local medical appointments.

Evening PCAs (3)

1. – Alternate to perform nighttime prep for 2 hours each evening, which includes assisting Nicole with securing thigh-high compression stockings on her legs/feet (lymphedema), etc.

In the long term, staffing is a make or break issue for us. This model is unsustainable as I age and am no longer able to conduct this symphony, and/or if solid PCAs are not available.

However, the more important daily issues that we face are: 

(1) Nicole is very naïve and trusting.  She is unable to fully protect herself from scammers, online predators, and unscrupulous people. Since Nicole is her own guardian, there’s not much I can do to prevent this and usually end up having to clean up whatever mess ensues. 

To try to curtail any future issues, I’ve notified the credit bureaus to prevent her from getting a credit card (I have power of attorney) and I supply her with a $20 per week allowance. 

(2) Nicole’s ability to access food from external sources.

Well-meaning neighbors need a lot of convincing to understand – no food means no food.

We also try to mitigate this by limiting her disposable income (no credit cards, $20 per week for coffee – low calorie snacks, etc.).

And Nicole sees a nutritionist regularly for formal weigh-ins and coaching.

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Is your loved-one an adult with PWS?

1. – What steps did you take to prepare for their life as an adult?
2. – What does independence look like for them?
3. – What supports do they have in place?
4. – Do they have romantic relationships and how are those maintained?
5. – Do they work or volunteer in their community and what does that look like?
6. – Do you have advice for parents on how and when to prepare for adulthood?

Share your story for our PWS in Adulthood Blog series by emailing africke@pwsausa.org.