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A Day in the Life of a Caregiver

Every day, around the clock, there are caregivers providing life-sustaining support for children with medical complexities. Sometimes they are nurses, parents, grandparents, legal guardians or other people in the child’s life – but no matter who is providing the care, there’s no doubt it’s a full time job and then some. In fact, did you know that 6 in 10 family caregivers are also full-time employees?

For a glimpse into just how busy a day in the life of a caregiver can be, we reached out to Stacey – mother of PHS patient Tana – to see what a given day looks like from her perspective. Read on to take a peek into their life, and then share a few facts about a day in yours! 

802 vest machine6:01 AM
– Check on Tana and start running her morning tube feeding.

7:01 AM – Nurse Mary arrives and changes Tana’s urine pad. I feel lucky to have such amazing nurses in my home!

7:20 AM – Tana gets her morning meds after they are mixed for the day (I prepared them last night).

7:30 AM – Tana receives Flonase to the nose, her catheter is inserted, 30 cc of water is put into her GJ tube, and is suctioned for oral secretions.

745 not elderly8:02 AM – Tana has a vest machine and cough assist performed with nebulizer and her diaper changed.

8:20 AM – on a typical day, Tana would be getting ready for school. Here’s a video on her school reality

8:45 AM – Nap time for Tana and nurse mixes food for the next day (must be measured and weighed).

9:02 AM – Nurse washes suction machine canisters and updates charting

9:15 AM – I email our massage therapist to cancel Tana’s 3pm massage. If only there were enough hours in a day…

601 tube feeding9:45 AM – Tana’s urine pad gets changed, she is given 30cc water into her GJ tube, and her tube feeding begins.

10:31 AM – Nurse gives Tana a message and gets her dressed and in the wheelchair, does her hair, applies her wrist orthotic, and pressure socks.

11:01 AM– Time to load up our adapted van and head to the Mayo Clinic for a urology procedure.

11:20 AM – Nurse Mary gives the next dose of meds and 30cc water into the GJ tube.

12:02 PM – Lunchtime! Tube feed is running.

12:30 PM – Time to suction oral secretions and put 30cc of water into Tana’s GJ tube.

101 testing1:01 PM – Me and Mary are with Tana during testing to assist with transfer and communicating her needs.

1:30 PM – Tana gets a urodynamic study with dye and x-rays taken of her bladder.

2:01 PM – Tana is given Advil to help with the pain along with 30cc water into her GJ tube and we start our drive home.

2:10 PM – Call my husband. I ask him to call St. Paul Children’s to add an evening appointment to have Tana’s ear looked at.

2:31 PM – We’re running late from Mayo to get to ENT. Had to go to after-hours appointment at the pediatrician.

515 daughters3:01 PM – Nurse gives Tana oxycodone for pain. Breaks my heart to see Tana in pain during our commute home, but that’s our reality.

4:50 PM – Finally home! Tana needs a quick stretch and diaper change.

5:01 PM – Nurse Mary’s shift is over. Tana, my husband, and I head to Children’s Hospital.

5:15 PM – I also have 22 and 24 year old daughters and a new grandson. Finding balance can be a challenge for me.

845 food5:45 PM – We visit with our new pediatrician and obtain a prescription for Tana’s ear issue and get her tube feed running.

7:01 PM – Long day! Finally on our way home, with a quick stop at the pharmacy for medication.

7:25 PM – Exhausted, Tana gets to bed without her usual shower.

7:35 PM – I do all cares for emptying the urine bag, administering meds, and switching food bags.

7:40 PM – I put on her pulse oximeter, put a clean bag in place, and put her ear drops in. At about 8:00, Tana falls asleep.

Originally published: August 26, 2015