Share. Connect. Love.

The Road to Recovery

Monday, January 2nd, one of the best people we know, Jim Custer suffered from a Spinal Stroke which paralyzed him from the collarbone down. We will post updates on this w[...] read more

Latest journal entry

Posted 2017-04-06T19:24:33Z

Excited and Overwhelmed

While having Jim home is amazing, it has been a two person 24/7 job. The renovations are beautiful and so helpful. However, it is still a small space and finding a routine of where to keep everything has been difficult. We have Jim’s hospital bed, his end table, his lift, a rolling table for Jim to eat on and a day bed. The day bed is there because he has to be turned every four hours overnight to prevent pressure sores.

One of the biggest challenges has been getting nursing support for his daily routines. Getting dressed and into his chair takes at least an hour and is a two person job. We were given the impression by Magee that a nurse would come out the day after we got home and then within a few days we would have nursing and CNA support. Apparently the request wasn’t sent into insurance so we didn’t have an aide of any kind come for one whole week after Jim moved home. The responsibility has been on Ellyn, Kristin, Ash, Jim’s Aunt Susan, and Jim Jr to have two people there in the morning, and then at least one person there around the clock. At night we pay out of pocket for a night nurse to come. This has definitely been one of our largest uses of the fundraising money and we have been SO grateful for it.

We mostly make food that Jim can feed himself but we have to prepare all of his meals, give him meds 3 times a day and manage his schedule of people doing assessments, consultations and finally nurses and therapists (once we got set up with Visiting Nurses Association). Also, we try to do stretches once a day on his arms and legs to keep his tendons from shortening. These are called Passive Range of Motion and the entire set takes about an hour. Needless to say, it has been overwhelming. Ellyn is balancing this care with setting up nursing, insurance and therapy while also trying to nanny as much as possible. Ash and Kristin are commuting back and forth to New York for the weekends to run their small business, Uprooted Flower Truck. Jim just got promoted at the Federal Public Defenders and needs to handle transitioning from his previous position to his new one. Aunt Susan helps so much but she has a lot of volunteer commitments and is running herself ragged.

We need help! You all have asked: how can I help? Well ladies and gentlemen, the time has come. Jim will be going to Magee rehab Monday, Wednesday, Friday. We have the next week worked out but moving forward, it would be amazing to have some support on this. Helpers will use the (partly GiveForward funded!) wheelchair accessible van we just got for these trips!

Sometimes when he isn’t in rehab, we could use some support during the day to hang with Jim, make sure he has water and he is sitting upright and comfortably in his chair, etc. Covering any these shifts will free us up to advocate for Jim in other ways. We're going to try for this assistant. I’ve made some signups for the next few weeks. If you want updates when new shifts go up, please make an account so I can send notifications!

Here is the link!

Our fundraiser is running on GiveForward until April 15th and then we will be continuing our fundraiser on a new site after that, I’ll send out the link as soon as we have it. Thanks so much for your donations thusfar! There are a lot of ongoing expenses so donations are never “too late” or “too little”. medical/page-pcm62k5/

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted