Hospital care and Care act law

[Tomswife]

When PALS is in any stage of ALS and is hospitalized they and their CALS need to assess their ability to request care from staff during the day and night.

For example, my PALS hubbie Tom is completely bedridden, cannot speak and cannot use his hands to call for assistance. Therefore the CALS, me, lived in his room his entire week long stay. There is a shower in the bathroom.

Someone may need to camp out in PALS room and Must if PALS cannot call the nurse/staff themself. Example events: bowel movement; condom catheter falls out; feed machine beeps all the time (was defective); request reposition; request peg tube site clean and bandage; PALS is not comfortable; need suctioning; need to manage bipap; need to manage oxygen (switching from bipap to nose oxygen); PALS drooling; manage TV or Audio book. And most important act as PALS translator and advocate with staff. The CALS needs to keep a journal of tests, events and vitals.

With permission, most Hospitals will allow 24 hour care by family. And for many PALS this is critical. Routine visits by the nurse are every 2 hours at our local large hospital.

Discharge - being discharged may add new concerns for home care. PALS may have declined in the hospital. PALS may need new durable medical equipment such as hospital bed, hoyer lift. New devices may be needed oxygen, suction, cough assist that were not needed before. These equipment and devices need to be in place before PALS goes home.

The CALS may need to increase hours for paid aides to help. The CALS may need to consider Hospice at home or at a facility. Or PALS may need to be discharged to a nursing home.
How do you know you are ready for post hospital care? The hospital is supposed to help you figure that out. The CARE ACT outlines the patient and caregiver rights. See attached document.

 

[Jhettinger]

It is a great feeling to know someone will be there when a PALS wakes up . night shift especially .

 

[Tomswife]

We had our telehealth with our PCP today. It is likely Tom will get pneumonia again. I have to stay on top of the mucous.
Tom does not want to go back to the hospital. I asked PCP and he said we could try oral antibiotics at home. We could get mobile xray. And there is mobile blood testing.
So maybe we can care for Tom at home if he gets pneumonia again.

 

[Mana]

Thank you for sharing your hard won experience with all of us following your path. Much appreciated

 

[Nuts]

The one time there was a 2 hour gap between family/private caregivers in the ICU my husband almost died. There was a code Blue two rooms down and all attention was on that room. He needed suction and couldn't signal anyone.

From then on, if I had to leave to use the bathroom I called for a nurse to sit with him until I renturned--and they did. I found hospital staff was wonderful once they realized I was there to help. In truth, I did most of the caregiving, and they appreciated the help. Once he was on a vent I always showed up with cough assist, suction (in case he had to be transported within the hospital for some reason as they don't have portable suction machines), and two Trilogys (just in case on broke) along with all the necessary supplies. Sometimes they didn't have the right supplies for my equipment. I literally had a rolling cart that I loaded everything onto.

Oh--and meds in the car. On more than one occasion the hospital did not have and could not get one or more of his meds. Eventually they would allow me to bring his in from the car. We had a large van and I even started taking the portable Hoyer with me. One hospital told me they didn't have a lift available (it was the only way to get a BM), so I told them I had mine in the van and would be happy to bring it in. I knew the procedure--their folks who maintain equipment in the hospital were supposed to inspect and ok it. Apparently that was more than they could handle so they located a hospital lift for me pretty quickly.

During another trip to the ER the gatekeeper told me I couldn't go back until they'd done their initial stuff. I looked her square in the face and asked if they had someone who would sit with him the entire time in case he needed suction. I wasn't belligerent--just sincere. She let me in. Be respectful and helpful, but be assertive, and always assume they will not have something you need.

 

[KimT]

Becky,

You were such an outstanding CALS. I remember the epic road trips and everything you did for your husband. And I remember your being by his side in the hospital and how much help you gave to everyone on the forum. We all learned a lot from you.