📋 The Caregiver Protocol Binder

This is a set of short, follow-along protocols you can print, three-hole punch, and keep in a binder. Each card covers one routine or emergency so a family caregiver or a paid aide can pick it up and follow it, even on a hard day or when someone new is covering a shift.

Think of it as a starting template. The cards below describe what is typical for many people after a spinal cord injury, but every person and every care plan is different. Sit down with your care team and fill in the blanks with this person's specifics: their schedule, their supplies, their medications, and what "normal" looks like for them. Then adapt to the plan your care team set.

Card 1: Autonomic Dysreflexia (AD) Emergency Card

AD is a sudden, dangerous spike in blood pressure. It can happen in people with an injury at T6 or above. It is usually set off by something the body is trying to tell you about below the level of injury, most often a full bladder or full bowel. Treat it as an emergency.

This person's AD risk: ____ Yes ____ No   Injury level: ______

Recognize the warning signs:

• Pounding or sudden, severe headache
• Sweating, flushing, or red blotchy skin above the level of injury
• Goosebumps; cool, pale skin below the level of injury
• Stuffy nose, blurry vision, anxiety, or a "something is wrong" feeling
• Slow heartbeat and high blood pressure (a reading much higher than this person's normal)

This person's usual blood pressure is about: ______ / ______

Respond right away — follow these steps in order:

1. Sit the person upright and lower their legs if you can. This helps bring blood pressure down.
2. Loosen anything tight: clothing, abdominal binder, leg bag straps, shoes, blood-pressure cuff.
3. Check the bladder first. If they use a catheter, make sure it is not kinked, clamped, or blocked, and that the bag is not full. If they do intermittent catheterization, catheterize now. If an indwelling catheter is blocked, follow the care team's plan for flushing or changing it.
4. Check the bowel next if symptoms continue, but only as the care team has instructed.
5. Check for other triggers: tight clothing, a pressure sore, an ingrown toenail, or anything pressing on the skin.
6. Call for help. If symptoms or the high blood pressure are not settling quickly, call 911 (or your local emergency number) and say the person has autonomic dysreflexia.
7. Keep monitoring blood pressure every few minutes if you have a cuff, and for a while after symptoms ease.

Card 2: Bowel Program

A bowel program is a planned routine to empty the bowel on a regular schedule, so it does not happen unexpectedly and does not get backed up (which can trigger AD). Follow the exact steps, products, and timing your care team set.

This person's schedule: Day(s): ____________  Time: ____________

Position: ____ commode ____ bed ____ other: ____________

Products/medications used: ____________________________

Typical steps (adapt to the care plan):

1. Gather supplies: gloves, lubricant, any suppository or mini-enema the team uses, wipes, pads, and a bag for waste.
2. Help the person into their usual position and protect the skin and bedding.
3. Give the prescribed suppository or stimulation as instructed, then wait the usual amount of time: ______ minutes.
4. If digital stimulation is part of the plan, use a gloved, well-lubricated finger and gentle technique exactly as the team trained you.
5. Allow the bowel to empty. Clean the skin well and check it (see Card 4).
6. Wash your hands and remove gloves.

What to record each time:

• Date and time, and whether there was a result
• Amount and consistency of stool (hard/dry, soft/formed, loose). The goal is usually soft but formed.
• Any blood, unusual color, or strong odor
• Accidents between programs, no result, or any signs of AD during the program

Card 3: Bladder / Catheter Care

The goal is to empty the bladder regularly and keep it from getting too full (which can trigger AD) while lowering the risk of infection. Use clean technique and follow the exact method this person uses.

Method: ____ intermittent catheter ____ indwelling/Foley ____ suprapubic ____ external/condom ____ other

Schedule / times: ____________________________

Catheter size/type: ____________  Supplies kept: ____________

Target fluid intake per day: ____________ (set by care team)

Clean technique basics (adapt to the plan):

1. Wash your hands well and put on gloves if instructed.
2. Gather a clean or sterile catheter (as the team specifies), lubricant, wipes, and a container or bag.
3. Clean the area as trained before inserting.
4. Insert gently; never force. Let the bladder drain fully.
5. For leg bags and drainage bags: empty before they are full, keep the bag below the bladder, and do not let tubing kink.
6. Clean up, remove gloves, and wash your hands.

Signs of a possible problem — tell the care team:

• Cloudy, bloody, or foul-smelling urine; mucus or sediment
• Fever (about 100°F / 38°C or higher), chills, feeling tired or "off," or new sweating
• More muscle spasms than usual
• Leaking around the catheter, no urine draining, or pain over the bladder or lower back
• Any signs of AD (these can be a sign of a full bladder or a urinary tract infection)

Card 4: Skin Checks & Pressure Relief

Pressure injuries can start fast and may not hurt if the person has no sensation in that area. Prevention is daily skin checks plus moving pressure off the skin on a schedule.

Do a full skin check at least twice a day (morning and bedtime), and any time after a transfer or accident. Use good light and a mirror for hard-to-see spots. Check:

• Tailbone, hips, "sit bones," heels, ankles, knees, elbows, shoulder blades, and the back of the head
• Skin under braces, splints, shoes, leg bag straps, and waistbands
• Look for: redness or darkening that does not fade, blisters, breaks, scrapes, or dryness
• Feel for: warmth, hardness, swelling, or a soft "boggy" spot

Pressure relief schedule (adapt to the care plan):

• In the wheelchair: shift weight every 15–30 minutes, holding each shift about 30–90 seconds. Methods: lean forward, lean side to side, or a push-up. This person uses: ____________
• In bed: reposition about every 2 hours, or as the team directs. A 30-degree tilt is gentler on the hips than rolling all the way onto the side.
• Keep skin clean and dry; manage moisture; check that cushions and mattress are correct and in place.

Early warning signs — act and tell the care team: redness or darkening that stays after pressure is removed, broken or open skin, or a warm/hard/swollen area. Keep all pressure off that spot until the team advises.

Card 5: Safe Transfers & Body Mechanics

A good transfer protects both people. Plan it, communicate, and never rush. Use the exact method and equipment this person uses.

Transfer method: ____ stand-pivot ____ sliding/transfer board ____ mechanical lift ____ two-person ____ other

Equipment needed: ____________________________

Steps (adapt to the care plan):

1. Clear the path. Lock the wheelchair brakes. Remove or swing away armrests, footrests, and leg rests as needed.
2. Position surfaces close together and at similar heights when possible.
3. Tell the person each step before you do it, and count together ("ready, 1-2-3").
4. Protect your back: feet apart, bend at the hips and knees (not the waist), keep the person close, and avoid twisting.
5. Use the board or lift as trained. Watch hands, feet, and the catheter so nothing gets caught or pinched.
6. Check that the person is safely centered and supported before you let go. Re-check skin and clothing.

Card 6: Respiratory Backup

Some people with higher injuries have weak breathing or a weak cough and need help clearing mucus. Clearing secretions prevents pneumonia. Use only the equipment and steps the care team set up.

This person uses: ____ cough assist (in-exsufflator) ____ suction ____ manual "quad" cough assist ____ ventilator ____ none

Routine schedule: ____________  Settings (if any): ____________

Secretion clearance basics (adapt to the plan):

• Follow the trained routine for cough assist or suctioning, including settings and how many cycles.
• Keep supplies clean; have a backup suction setup and a charged battery if used.
• Help with position changes and hydration (as the team allows) to keep mucus loose.

Warning signs of a chest infection — tell the care team:

• More mucus, or mucus that turns yellow, green, or bloody
• Fever, chills, or feeling very tired
• Faster or harder breathing, more congestion, or a weaker cough than usual

Card 7: Medication Schedule

Keep one current, accurate medication list. Update it whenever the care team makes a change, and bring it to every appointment and to the ER.

Also note:

• As-needed (PRN) medicines, and exactly when to give them: ____________
• Pharmacy name and phone: ____________
• Allergies and reactions: ____________
• How refills are handled and who to call: ____________

Card 8: Emergency Info Sheet

Keep this page at the front of the binder, and consider a copy by the door and in any go-bag. It tells a paramedic or new caregiver what they need to know in seconds.

Name: ____________________  Date of birth: ____________

Diagnoses / conditions: ____________________________

Spinal cord injury level & type: ____________ (e.g., C5 incomplete)

AD risk (T6 or above): ____ Yes ____ No  Usual blood pressure: ____ / ____

Current medications: see Card 7 (attach a copy)

Allergies: ____________________________

Devices / equipment: ____ ventilator ____ tracheostomy ____ indwelling/suprapubic catheter ____ ostomy ____ baclofen pump ____ feeding tube ____ other: ________

Communication / care needs: ____________________________

Key contacts:

• Emergency: 911 (or local number)
• Primary doctor: ____________ Phone: ____________
• SCI / rehab specialist: ____________ Phone: ____________
• Preferred hospital: ____________________________
• Family / emergency contact: ____________ Phone: ____________
• Home health agency: ____________ Phone: ____________
• Pharmacy: ____________ Phone: ____________

Sources

• Consortium for Spinal Cord Medicine / Paralyzed Veterans of America. Acute Management of Autonomic Dysreflexia (Clinical Practice Guideline).
• Model Systems Knowledge Translation Center (MSKTC). Fact sheets on skin care & pressure sores, bowel function, urinary tract infection, and personal care attendants after SCI.
• National Pressure Injury Advisory Panel (NPIAP) / EPUAP. Repositioning and 30-degree side-lying guidance.

Information, not medical advice. These cards are a general template and may not fit every situation. Work with the person's care team to confirm each routine, fill in their specific details, and adapt to the plan your care team set. In an emergency, call 911 or your local emergency number.