Life With ALS.com
+ Diagnosed Aug 2005
+ Bipap March 2007
+ PEG July 2007
+ Trache and Vent July 2008
Still Living, Loving & Laughing
Morning instructions: Non bath morning.
1. While still in bed give me my medication through my PEG. Leave me covered up, I get cold quickly.
2. Change the pad on the seat of the wheelchair.
3. Unplug the wheelchair from the charger.
4. Plug the vent into the wheelchair.
5. Move the wheelchair to the bottom of the bed. Tip it back.
6. Put the battery in the lift.
7. Put the sling around my legs.
8. Connect the lift to the blue leg straps.
9. Raise the bed so my head is up.
10. Relocate my pillow to behind the sling. Support my head while doing this.
11. Connect the lift to the gray straps.
12. Attach the clip to the blue straps on the inside of my legs. Put my arms outside the sling.
13. Lift me all the way up without stopping.
14. Swing my legs over the side of the bed.
15. Press the button to lower the bed and while it is lowering do the following.
16. Put my pants on. Change my socks.
17. Take my circuit off.
18. Move me into the wheelchair. Follow the instructions “Putting me in the Wheelchair” below.
19. Check my feet.
20. Start the vent on the wheelchair and put it on me.
21. Turn off the alarm on the vent by the bed by holding the button for 3 seconds to put it in standby.
22. Tilt me forward and take my shirt off. Follow “NOTE #9” below.
23. Wash under my arms.
24. Wash my back.
25. Put my shirt on following “NOTE #9” below.
26. Remove any wrinkles in my shirt and the sling.
27. Tip me back again,
28. Put my blanket on.
29. Move me into the bathroom and clean my dressings, wash my face, then my head, then my hands.
30. Move me into the office.
Click here to view a PDF file of the Morning Instructions which you can print or save
1. While still in bed give me my medication through my PEG. Leave me covered up as I get cold quickly.
2. Change the pad on the seat of the wheelchair.
3. Unplug the wheelchair from the charger.
4. Plug the vent into the wheelchair.
5. The wheelchair is now ready for after the shower.
6. Move the Shower Chair/Commode to the foot of the bed facing the bathroom. Tip it back.
7. Put the battery in the lift.
8. Put the sling around my legs.
9. Connect the lift to the blue leg straps.
10. Raise the bed so my head is all the way up.
11. Relocate my pillow to behind the sling. Support my head while doing this.
12. Connect the lift to the gray straps.
13. Attach the clip to the blue straps on the inside of my legs. Put my arms outside the sling.
14. Lift me all the way up without stopping.
15. Swing my legs over the side of the bed.
16. Press the button to lower the bed and while it is lowering do the following
17. Take my socks off.
18. Disconnect the circuit from the humidifier and put it directly on the vent.
19. Unplug the vent. Turn the alarm off.
20. Move the vent to the bed.
21. Move me into the Shower chair. Make sure I am far enough forward, in the chair, so I am not in pain.
22. Take the lift off the sling.
23. Move the lift to the bathroom and park it over the toilet.
24. Tip me back more and take the sling out from under my legs.
25. Tip me forward and take my shirt off following “NOTE #9” below.
26. Take the sling completely out.
27. Tip me back as far as it will go.
28. Move me into the shower. Over the drain, lock the wheels.
29. Plug in the heat lamp as I get very cold.
30. Start the shower and let it warm up. Test on my back.
31. Wrap a hand towel around my neck to protect my trache as we don't want water to go down it.
32. Move my head back and carefully wet one side of my head. Then the other side.
33. Keep the water on my back as my head is shampooed.
34. Rinse my head the same way, one side at a time.
35. Wet one side of my body. The other person will start washing. Then the other side.
36. Once done then dry me. Rub me with the towel, don't pat.
37. Don't dry my arm pits as they need to be wet for the deodorant I use. I use a natural stone.
38. Put on my deodorant. Between 30 to 40 strokes, each arm.
39. Use Q tips to do my ears.
40. Now relocate the shower chair. Unlock the wheels and swing me around 180 degrees and against the curb. Lock the wheels again.
41. Tip me forward and dry my back.
42. Put my shirt on following “NOTE #9” below.
43. Put the sling behind me.
44. Tip me back again.
45. Move the wheelchair into the bathroom.
46. Put the straps under my legs. (for more directions see: Putting the Sling on)
47. Hook up the lift and start to lift me. Tip the shower chair forward.
48. Put me in the wheelchair following the directions “Putting me in the Wheelchair”.
49. Change vents. Start the vent on the wheelchair and put it on me.
50. Put my socks and pants on.
51. Put my blanket on.
52. Change my wet collar strap. Drying my neck first.
53. Clean my PEG and trache.
54. Put fresh dressings on.
55. Put my shoulder blanket on.
56. Move me into the office.
Click here to view a PDF file of Bath Morning which you can print or save
Meals: Make sure all food is warm. Water and juice too.
1. Remember to let me expel gas through my PEG before feeding me by putting on a syringe without the plunger. Use it like a funnel.
2. Using the syringe like a funnel do the following:
3. Flush the tube with ¼ cup (1 syringe) of water.
4. Morning; a half a shake, (half cup) . “Carnation Instant Breakfast.” ¼ cup (1 syringe) of juice and ¼ cup (1 syringe) of water to flush.
5. Lunch; a “Smoothy” (half cup) or a “Boost” and flush with ½ cup (2 syringes) of water.
6. Mid afternoon (3:00 PM); ½ cup (2 syringes) of juice with 1 tablespoon of “Superfood” and flush with ¼ cup (1 syringe) of water.
7. Supper; a half cup to a full cup of regular food that has been blended up with the Vita-Mix. Flush with quarter cup of water.
8. At about 7:00 PM or 7:30 PM give me a Yogurt.
Click here to view a PDF file of Meals which you can print or save
Evening instructions - Bedtime:
1. Give me my medications through my PEG at about 9:15 to 9:30 PM.
2. Prepare the bedroom. Raise the head of the bed only. Put water in the humidifier.
3. At 10:00 PM take me into the bedroom.
4. Leave me in an open area so you can easily get around me.
5. Tip me forward and take my shirt off following “NOTE #9” below.
6. Scratch my back.
7. Put on my pyjama top following “NOTE #9” below.
8. Tip the wheelchair back, take my pants off and change my socks.
9. Ask me if I need suctioning and respond appropriately.
10. Put the sling around my legs.
11. Move the wheelchair to the foot of the bed facing the bathroom.
12. Attach the lift to the blue straps.
13. Attach the lift to the blue straps on the top of the sling.
14. Start to lift me and push the wheelchair back so I don't come in contact with the headrest.
15. Finish lifting me.
16. Take the circuit off.
17. Quickly move me to the bed and lower me.
18. Start the vent next to the bed and put it on me.
19. Start the humidifier, make sure it has 2 lights on.
20. Put the vent on the wheelchair on standby, press the button for 3 seconds.
21. Raise the foot of the bed.
22. Disconnect the sling from the lift.
23. Take the sling out from under my legs.
24. Move my pillow from behind the sling to under my head in front of the sling. Support my head while doing this.
25. Put a pillow under my feet and put wedges under to support my feet.
26. Put a pillow under my left knee.
27. Put a pillow under my left elbow.
28. Cover me up. Be careful to not have the blanket on my feet as it hurts tremendously.
29. Make sure my PEG tube is placed on the right side of my chest, not down, so my hands are not placed on it.
30. Put my right hand on my chest and make sure my fingers are straight.
31. Put my left hand on top of my right and again make sure my fingers are straight.
32. Make sure my circuit is not pulling.
33. Make sure the pillow under my head is properly supporting my head so it does not fall over.
34. Take the battery out of the lift and put in the charger.
35. Move the wheelchair to its night spot.
36. Plug into the charger.
37. Disconnect the vent from the wheelchair battery and connect it to the wall outlet
Click here to view a PDF file of Bedtime Instructions which you can print or save
Suctioning: Suction a minimum of 3 times. Warning: Keep spinning the catheter between your thumb and forefinger. Do not let it latch onto my trachea.
1. Put a glove on the hand you want to handle the red catheter with.
2. Remember that your glove hand is only to touch the red catheter – nothing else. It is a common mistake, the glove is for my protection, not yours.
3. Turn on the suction machine with your non-gloved hand.
4. Suck some saline through the catheter.
5. When wetting the catheter, tap off the excess moisture so it does not drip on the floor, or me.
6. First time – suction on the way down and only go down to the level of the trache tube.
7. Second time – depending on what the first was like either do the same thing OR go all the way down and suction coming up. Remember to keep spinning the catheter.
8. When you hear “Rattling” then suction on the way down. Don't go all the way down and suction on the way up because that pushes the secretions down and we don't want that.
9. Repeat until I say it is good.
10. Put on the tie to hold the circuit from coming off.
11. Monitor the level of the collection jar. Don't let it get too full before emptying it. Make sure it is always empty as there might not be time to empty it when I really need to be suctioned.
12. Make sure there is always saline in the container. If it is getting low replenish it.
Click here to view a PDF file of Suctioning which you can print or save
Cleaning Stomas: This applies to both the Tracheostomy and PEG.
1. Wash your hands.
2. Remove any dressing around the Tracheostomy/PEG site. The tube does not have to be removed to clean the stoma.
3. Dip the cotton tip applicators in the saline solution and use it to clean around the stoma site.
Start as close as possible to the tube then work away from it.
4. Repeat the process until debris and/or mucus is removed.
5. Use a dry cotton tip applicator or new dressing to dry the skin.
6. A new dressing should be placed under the flange for the tube. A dry dressing is helpful to prevent skin irritation and catch secretions.
Click here to view a PDF file of Cleaning Stomas which you can print or save
Putting the Sling on: This is very important to get it on correctly.
1. Before putting the sling on, make sure I am sitting properly in the wheelchair. Sitting square and all the way back in the wheelchair.
2. Tip me forward and make sure I am straight. If not then stand in front of me and grab my shoulders and straighten me.
3. Put the sling behind me and make sure it is balanced side to side and down as far as possible.
4. Tip me back and as the chair is tipping help me back and position me in the centre of the seat.
5. Make sure the chair is back quite a bit. This is important so I am not pulled forward in the chair.
6. Tuck the leg straps beside the seat on my wheelchair. Do it as Christine showed you.
7. Important: the sling has to be set for quick attachment. If it takes too long to unravel the straps it will be too late for me to get on the toilet.
NOTE: It is extremely important to get the sling balanced side to side. When the sling is put under my legs it has to be the same on both legs. The straps can't be longer on one leg than the other.
1. Once I am in the air supported by the lift.
2. Make sure the wheelchair is tipped back a bit.
3. Start to lower me.
4. Standing in front of me with the lift controller in your hand, push on my knees while lowering me. Push equally on both knees. Watch my legs and feet. My legs can't be over the leg rests as you will never be able to push me back and it will hurt.
5. Make sure I am all the way back in the chair and sitting straight.
6. Once I am positioned properly then disconnect the lift.
7. Make sure I am tipped back quite far.
8. Remove the straps from under my legs.
9. Tuck the straps beside the seat as Christine showed you. Again, they have to be setup for quick deployment.
NOTE: It is extremely important to have me tipped back sufficiently so when removing the straps from under my legs I am not pulled forward in the seat. This also goes for adjusting my shirt.
Click here to view a PDF file of Sling & Wheelchair which you can print or save
Toileting: This needs to be quick as when I have to go – I have to go.
1. Take me into the bathroom.
2. Put the arms down beside the toilet.
3. Back me beside the toilet and within 2 inches (5 cm) from the arms. It needs to be this close because of the lift.
4. Tip me back and put the sling around my legs. Watch that the headrest is not hitting the wall.
5. Attach the lift to the blue straps on the sling around my legs.
6. Attach the lift to the gray straps on the top of the sling.
7. Make sure my arms are outside the straps.
8. As you are lifting me tip the wheelchair forward.
9. Move me to the toilet and lower me.
10. Make sure I am centred, side to side, on the toilet seat.
11. Keep tension on the sling as I use it to hold me.
12. Once finished set the bidet to wash me, then dry.
13. When the drying cycle starts increase the slack on the sling and push me back so I am resting on the back of the toilet.
14. Once finished - Refer to “Putting me in the Wheelchair”.
Click here to view a PDF file of Toileting which you can print or save
Sickness: If you are sick. This is extremely critical and not to be taken lightly.
If you have a cold or the flu please don’t come and expose me to those germs. It could be fatal for me.
My immune system is already compromised so I can not fight off germs like I used to, or as a normal person can.
Since I am on a vent catching a cold is the most dangerous thing that can happen to me as there is no way for me to blow my nose or cough up phlegm. It is easy for it to turn into pneumonia and that would get me into a hospital really quickly. The only hospital that is setup to care for me is in Vancouver so that would be a major inconvenience for everyone.
If you are sick let us know and stay away until you are well over it. This is serious!
Do not take this lightly!
Click here to view a PDF file of Sickness which you can print or save
1: We have a septic tank for our sewage system.
The only thing that can be flushed, other than the obvious, is toilet paper.
This means we can’t flush anything and everything down the toilet.
* No paper towels, kleenex or feminine products.
* It also means nothing from the kitchen.
2: When the vent alarm goes off.
If the vent alarm goes off do not ignore it, or shut it off, as there is a reason that needs to be discovered. Remember, I do not have any independent breathing time so be quick to find the problem.
* Check that my circuit has not come off my trache. Listen for air rushing, this is an indication the circuit is not on my trache properly.
* Make sure it has not come apart at the HME (blue thing).
* Make sure the small hoses are still connected to the exhale valve.
Once fixed the alarm will automatically go off.
3: When tipping me back (in wheelchair) after I have been forward.
This is when you have finished putting my shirt on or after straightening the wrinkles in my shirt and the sling.
When tipping the wheelchair back don’t keep going as when I finally fall back I slam back and it hurts. Tip the wheelchair back to a point where I start to fall back and stop. This way I can comfortably fall back, after I have settled back you can finish tipping the wheelchair back.
4: Do not push on my right shoulder.
It hurts tremendously when someone pushes on my right shoulder. It feels like someone has stuck a knife in my shoulder blade.
IE. When I am being tipped forward there is a reaction to put pressure on my shoulder to stop me from falling too far forward.
5: Do not force the levers on the power wheelchair.
When you want to disengage the motors on the wheelchair so you can move it manually (you call them brakes) do not force the levers. They should move easy, if they are stiff rock the wheelchair back and forth to take the pressure off. Then it should be easy to move the levers thus disengaging the motors.
Please do not stand on them to move them, it is not necessary.
6: Ask me one question at a time.
When asking me questions, ask one at a time and let me respond before asking me another. Everyone has a tendency to ask multiple questions and then you don’t know which one I am responding to.
7: Shower Mornings. Don’t turn the fan on.
While I am being showered please don’t turn the fan on until after I am finished. I understand it may get a little warm but when the fan is on I freeze. Once I am in my wheelchair turn the fan on.
8: When asking me a question, ask it once.
When asking me a question, acknowledge my first response. Please don’t keep asking the same question over and over. I don’t change my mind. Accept my first response.
9: Taking my shirt off and on.
When taking my shirt off, take my left arm out first then my right.
When putting my shirt on, put my right arm in first then my left.
* The reason for this because my right arm is not as flexible as my left and it hurts to move it too much.
10: When hooking the sling to the lift.
Once the sling is connected to the lift the last thing to do, before lifting me, is connect the “CLIP”. Also, make sure the solid part of the clip is against my body. If it is the other way around it pinches my skin.
Click here to view a PDF file of Notes which you can print or save
NOTE: If the vent alarm goes off do not ignore it, or shut it off, as there is a reason that needs to be discovered. Check that my circuit has not come off. Listen for air rushing, this is an indication the circuit is not on my trache properly. Once fixed the alarm will automatically go off.
Added: Sept 20, 2010
Updated: Dec 30, 2010
