Herrad wrote this out 5/3/2008. Since then things have changed as she now has an horrific pressure wound on her right buttock and can not sit up. I have to dress that twice a day. Just skimm through- to dull to read it all.
Daily Tasks.
Enquire how the night was
Fetch painkillers and water.
Check for sores around ears and neck and apply cream.
Adjust position in bed.
And check nightclothes are sitting comfortably.
Check and adjust pillow for maximum neck support.
Put on disposable gloves.
Empty catheter bag
Make sure it’s properly closed.
Prepare breakfast in bite size pieces.
Adjust position in bed to sitting up.
Place bed table by bed at correct height.
Bring breakfast and tea and water.
Assist with eating and drinking.
Assist in taking pills (baclofen)
Start daily stretching and massaging session.
Legs first, each leg 20 mins of several slow stretching exercises with pauses.
Stops muscles from getting shorter and helps reduce spasms.
Then arm stretching and rotating exercises, each arm 20 mins of slow stretching and rotating exercises with pauses.
Check catheter bag and empty, always wear gloves.
Make sure bathroom is warm.
Check position in bed.
Bring hoist near bed.
Fetch shower chair.
Raise shower chair.
Place in sitting position.
Place lifting stirrups under legs and clamps around midriff.
Check body correctly and safely held by hoist.
Then lift out of bed.
Place in shower chair.
Remove lifting stirrups from under legs and clamps around midriff
Make sure position in chair is good.
Adjust by tilting shower chair to care position and gently moving to correct position.
Then adjust shower chair height.
Wheel chair into bathroom.
Place by washbasin.
Put handgrip on toothbrush.
Put toothpaste on brush.
Place in hand.
Assist when needed.
Pass cup of water for rinsing mouth.
Wash face and dry gently.
Raise height of shower chair.
Place shower chair above toilet.
Turn extractor fan on.
Return to bathroom when finished.
Gently wipe bottom.
Carefully remove tape and heel protectors.
Check water is correct temperature.
Place shower chair under shower.
Adjust to lying down position.
Gently wash feet first.
Dry feet.
Massage feet and apply cream.
Reapply heel protectors and tape.
Remove clothes.
Then gently wash top half.
Make sure dry and covered.
Turn shower chair around.
Check sores on bottom.
Gently wash bottom half of body.
Dry carefully dabbing and not rubbing to avoid damaging skin.
Carefully apply cream to entire body.
Then apply antiseptic cream to sores and mepitel bandage.
Adjust shower chair to care position to put on wrap round disposable pants.
Carefully put on long underpants.
Slowly to avoid friction to skin.
Be careful at all times to avoid triggering spasms.
Adjust shower chair to sitting position.
Make sure position in chair is good.
Adjust if needed.
After consultation fetch clothes.
Adjust shower chair to care position to put on trousers.
Carefully put on trousers.
Be careful at all times to avoid triggering spasms.
Adjust shower chair to sitting position.
Then carefully complete dressing.
Putting on tops takes time to avoid too much pain.]
After tops are on check neck/throat/ears for red patches.
These are caused when tops are put on.
Apply cream to red patches.
Once dressed wheel shower chair into bedroom.
Place lifting stirrups under legs and clamps around midriff.
Check body correctly and safely held by hoist.
Then lift out of shower chair.
Remove shower chair.
Place electric wheelchair under hoist.
Tilt electric wheelchair.
Carefully put into wheelchair.
Adjust chair to sitting up position.
Check sitting position.
If not sitting correctly adjust.
Always make sure chair is not switched on when adjusting sitting position.
Bathroom routine takes two hours.
Turn radio on.
Wheel standing aid (sta-tafel) into front room.
Place strap around below hips attach to table and hoist to standing position.
Stand for ten minutes.
Make tea and fill water bottle.
Place two plastic cups on table..
Half fill one cup with tea and one with water.
Check temperature of tea.
Pass cup of tea.
Assist in drinking.
Sit and talk about plans for the day.
Talk about the stress and emotions that the ms causes.
Check in calender for appointments and reminders.
Make calls.
Dial numbers and hand phone over.
Log appointments.
Place feet carefully on foot rests of motomed.
Take care not to trigger painful spasms.
Secure feet and legs.
Make sure feet are strapped in properly.
This stops any possible damage to legs/feet/heels.
Plug in and select program for legs.
Check it’s on slow speed.
Stay close to assist.
Lower speed when necessary.
After 10 minutes change to arm exercises.
Arm exercises take five minutes.
Then turn off machine and unplug.
Place feet carefully on foot rests of wheel chair.
Again take care not to trigger painful spasms
Check sitting position.
If not sitting correctly adjust.
Tilt chair to adjust position in chair.
Due to the ms body temperature fluctuates.
One minute hot then cold.
Check clothes are not sweaty.
Change if needed.
Check room temperature is good.
Open window if needed.
Or turn on heating if cold.
Check position in chair.
Give two pills (acetylsoalicyl &perindopril)
One dissolved in water.
One swallowed with water.
Place pill in mouth
Prepare lunch.
Place bed table over chair at correct height.
Serve lunch
Place the two plastic cups this time one with juice the other with water on table.
Assist with eating and drinking.
Cut up food when needed.
Feed when asked.
Wash face and hands.
Check catheter bag and empty, always wear gloves.
Check sitting position.
If not sitting correctly adjust.
Tilt chair to adjust position in chair.
Ensure there’s a break to rest.
Assist in tilting chair.
Select requested audio book
Insert disc in machine.
Make sure juice/tea/water is available
Stay nearby.
While resting check medical and care items in bathroom.
Phone doctor for repeat prescriptions.
Organise bedroom.
Check clothes.
Wash if needed.
Collect dry clothes and fold and store.
Suggest going out.
Check catheter bag and empty, as always wear gloves.
Put on jacket and leg cover.
Place wheelchair bag with water bottle/ plastic cup on back of chair.
Check rain cape/hat/scarf and gloves are in bag.
Assist in leaving.
Call lift.
Make sure doors stay open.
Select ground floor.
Downstairs clear corridor of bikes.
Accompany to market and shops.
Every now and then check sitting position.
Make sure not hanging too much to one side.
If not sitting correctly adjust.
Tilt chair to adjust position in chair.
Stop for occasional breaks.
Assist in drinking some water.
Make sure not cold or too hot.
Adjust clothes if needed.
Help where needed.
Return home
Check catheter bag and empty if needed, as always wear gloves.
Take off jacket and leg cover.
Assist in taking pills (baclofen)
Assist in tilting chair.
Select music.
Discuss what to eat.
Start preparing food.
Make pot of tea.
Fill cups with water and tea.
Assist in taking painkillers.
Sit and talk while food is cooking.
Place bed table over chair at correct height.
Serve dinner.
Place the two plastic cups this time one with juice the other with water on table..
Assist with eating and drinking.
Cut up food when needed.
Feed when asked.
Wash face and hands.
Check catheter bag and empty, always wear gloves.
Wheel standing aid (sta-tafel) into front room.
Place strap around below hips attach to table and hoist up to standing position.
Stand for ten minutes.
Place back into w/chair.
Check sitting position.
If not sitting correctly adjust.
Tilt chair to adjust position in chair.
Make tea and fill water bottle.
Place two plastic cups on table..
Half fill one cup with tea and one with water.
Check temperature of tea.
Pass cup of tea.
Assist in drinking.
Assist in taking pills (simvastatine)
Prepare some fruit.
Mobile phone reminders for next day.
Assist with drinking of water.
Assist in taking pills (baclofen)
Make sure bathroom is warm.
Go into bedroom.
Bring hoist near chair
Fetch shower chair.
Raise shower chair.
Place in sitting position.
Place lifting stirrups under legs and clamps around midriff.
Check body correctly and safely held by hoist.
Then lift out of w/chair.
Place in shower chair.
Remove lifting stirrups from under legs and clamps around midriff
Make sure position in chair is good.
Adjust by tilting shower chair to care position and gently moving to correct position.
Then adjust shower chair height.
Wheel shower chair into bathroom.
Place under washbasin.
Put handgrip on toothbrush.
Put toothpaste on brush.
Place in hand.
Assist when needed.
Pass cup of water for rinsing mouth.
Wash face and dry gently.
Put on disposable gloves.
Check catheter bag
Make sure it’s properly closed.
Then remove tee-shirt and other tops.
Remove trousers and long underpants.
Gently to prevent making skin/friction burns.
Remove disposable underpants.
Check sores.
Carefully remove tape and heel protectors.
Check water is correct temperature.
Place shower chair under shower.
Adjust to lying down position.
Gently wash feet first.
Dry feet.
Massage feet and apply cream.
Then gently wash top half.
Make sure dry and covered.
Turn shower chair around.
Check sores on bottom.
Gently wash bottom half of body.
Dry carefully dabbing and not rubbing to avoid damaging skin.
Carefully apply cream to entire body.
Then apply antiseptic cream to sores and mepitel bandage.
Adjust shower chair to care position to put on wrap round disposable pants.
Carefully put on long underpants.
Slowly to avoid friction to skin.
Be careful at all times to avoid triggering spasms.
Adjust shower chair to lying position.
Make sure position in chair is good.
Adjust if needed.
Put on new pants.
Replace long underpants.
Adjust to sitting posistion.
Put on night tee-shirt.
Replace heel protectors and tape on carefully.
Assist in giving painkillers and sleeping tablets.
Place lifting stirrups under legs and clamps around midriff.
Check body correctly and safely held by hoist.
Then lift out of shower chair..
Place carefully in bed.
Hold feet in position to avoid slipping out of stirrups.
Adjust position in bed.
Move carefully to centre of bed.
Start stretching and massaging session.
Legs first, each leg 20 mins of slow stretching exercises with pauses.
Stops muscles from getting shorter and helps reduce spasms.
Then arm stretching and rotating exercises, each arm 20 minutes of slow stretching and rotating exercises with pauses.
Check catheter bag and empty, always wear gloves.
Check tee-shirt wrinkle free in back.
Position cushions under legs and under arms.
Place pillow under head.
Put on cotton gloves.
Cover up carefully.
Put Vaseline on lips.
Open window.
Turn out light.
Get up twice during night to change position in bed.
Now you see I do quite a lot but all the while I have a crushing feeling that I dont do enough. I feel so guilty for the presure sore. I should have stopped it happening. It was a controlable factor and what pisses me off is it got bad because of my lack of ability to fight the local beuracrats. My Dutch is so bad. I was smilling politenss to a sickening little arsehole from the local authority "advice centre" who stitched us up with a wheelchair that Herrad rattled around like a pingpong ball in the back of a van. I let Herrad do the arguing because of my lack of confidence. I know the outcome would have been more likely to be in our favour if I was in an anglophone environment. I hate myself for not fighting like I should have done.
However my particular wrath is reserved for ARCA (the advice centre for Amsterdam) who have consitantly screwed us with cheapest and least helpful equipment and directly allowed this sore to develop. I wont name check the individuals cos they freaked when Herrad named one when she was given a previous crap wheelchair but to my mind it is a stinking organisation who represent the needs of the acountants and contrators but not the sick and disabled..
.bmp)
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