January 29, 2013
A Typical Day
Diane’s Caregiving
Duties
12:05 a.m. Bob
wakes me up with arm pain. Heat heating pad in microwave and apply
heat pad to arm.
6:30-6:55
a.m. Disconnect
feeding pump. Flush tube with warm water. Clean tube with cannula brush. Change bed pad. Empty night
urinal. Boost (I use a draw sheet) and reposition in bed. Crush
and dissolve medications. Syringe into feeding tube.
8:00 a.m. Empty
urinal and rinse. Supply towels and help wipe off.
8:30 a.m. Set
Bob up with art supplies: sketchpad on clipboard and pencils
9:00 a.m. Empty
urinal etc.
9:45 a.m. Sharpen
pencils per Bob’s request.
10:30-11:00
a.m. Fold
laundry, mostly towels and Bob’s bed pads and sheets.
10:45 a.m. Accept
Walgreens delivery at door, sign and pay for scripts.
11:00 a.m. Gather
supplies for bed bath.
11:05 a.m. Get
fresh water and a fresh Den-Tip swab at Bob’s request.
11:09 a.m. Empty
urinal, etc.
11:10-11:55
a.m. Bed
bath, then dress.
11:45 a.m. Empty
urinal, etc.
11:55-11:59
a.m. Transfer
from bed to wheelchair.
11:59-12:06
p.m. Perform
manual neck stretching exercises with wheelchair tipped on bed. (Trained by OT
to do this.)
12:06 p.m. Brush
hair, secure ponytail, get sunglasses, wheel out to front porch.
12:10 p.m. Sit
and “chat” for a few minutes.
12:15-12:25
p.m. Strip
hospital bed, flip gel overlay, make bed with new sheets, pads, etc.
12:30-12:45
p.m. Wheel
back into house. Transfer into bed.
12:45 p.m. Start
new load of laundry.
12:48-1:00
p.m. Crush
medications, dissolve in water, prepare syringes. Administer medications
through feeding tube.
1:00 p.m. Empty
urinal, etc.
1:05-1:15
p.m. Change
pants including underwear. Boost and reposition in bed.
1:15 p.m. Throw
wash in dryer.
1:16 p.m. Wipe
down Bob’s bedside table, he spilled water.
1:18 p.m. Call
the Lab and schedule PT/INR home visits to start next week under new/old insurance
plan. (Yes, I switched his insurance back after I found out that the hospital and insurance company kissed and made up! After all that mess I went through..... aaargh)
1:25-3:45
p.m. Help
Bob with exercises for physical therapy, range of motion for occupational
therapy, exercises for speech and swallow therapy.
2:03 p.m. Empty
urinal, etc.
3:02 p.m. Empty
urinal, etc.
3:45-4:00
p.m. Change
clothes to hospital gown. Boost and reposition in bed.
4:00 p.m. Empty
urinal, etc.
4:10-4:15
p.m. Boost
and reposition in bed. Put on hand splint.
5:00 p.m. Empty
urinal, etc.
6:16 p.m. Empty
urinal, etc.
6:17-6:45
p.m. Set
up night feeding pump. Crush and dissolve medications, prepare syringes,
administer medications through feeding tube. Connect pump and start pump. Boost
and reposition in bed. Get Bob a fresh Den-Tip swab.
8:05 p.m. Empty urinal, etc.
9:30-9:40
p.m. Boost
and reposition in bed. Tuck in for night. Get night spillproof urinal. Supply
blankets, etc. Turn off lights.
12:45 a.m. Bob
is cold. Get up and get extra blanket. Turn off ceiling fan.
5:30 a.m. Bob
is warm. Get up and turn on ceiling fan. Take away extra blanket.
6:30 a.m. New
day! Start over. Disconnect feeding pump etc. etc…..
Other Regular Caregiving Duties
Weekly Schedule
all transport rides, make appointments when needed, order prescription refills,
fill three weekly pill dispensers (morning, noon, night). Chart bowel movements
and administer laxative when needed. Apply pain patches every 72 hours.
Twice
Weekly Change
diaper or bed pan, clean up afterwards. (Bowel movements.)
Thrice
Weekly Wash
hair at kitchen sink. This takes 20 minutes or so.
1-5 times
monthly Take
Bob to doctor’s appointments. Trips take all afternoon on wheelchair transport,
usually 1-4 p.m.
2-3 times
weekly Take
Bob to therapy appointments, if/when scheduled.
hmmmm, wonder how much that would be?
9 comments:
I'm crossing my fingers for you - getting back wages would be a win.
Being a writer is powerful in many ways.
Diane,
The point is they can't afford to replace you. I watched my Social Security drop year after year while I became the constant caregiver to the point where it is diddly.
Medicare would pay to have a visiting nurse and private duty up to a point to care for my husband, and expect me to work a full time job outside the home to contribute money into a system that they borrowed from Peter to pay Paul.
A wife cannot be a full time caregiver and "paid." There is something wrong with this system. That doesn't consider being a wife, mother, caregiver (a license one to boot) and not consider it earned income.
Hi Diane. I just started reading your blog a few months ago and am enoying it immensely. I go back through the older posts whenever I have the time. I had a hemorrhagic stroke on 10/21/11 in the right hemisphere, so am left-side affected. I was very lucky and wasn't affected to any great extent. I was able to keep my job as an architect designing accessible rental housing (ironic I know). Like Bob I like to draw and paint, and like you I like to write, but I am not as good at either as you all are. I admire you very much. Say hello to Bob for me
Hi Diane,
If I were "on the jury" I would award you a gazillion dollars.
There is no harder work on this planet than being a caregiver!
Being a caregiver myself, I have not received sick pay, vacation time, a pension plan, insurance benefits or a cost of living raise.
Hurrah to us caregivers! Sending love your way -:}
I did much the much the same time line report for one day about a year ago when I was caring for my wife. She couldn't understand why I was tired all the time since I "was just taking care of her"! She didn't think there was much work involved. After doing the time line and having her read it, I didn't hear about my "easy job" any longer.
It's always amazing the time involved in caregiving. The part that most people don't consider is how full time caregiving affects the caregiver. There is no personal time, there is no real break time, there is no vacation, pay is non-existent, there is no escape from the stress, and sleep deprivation is all too common. There is no other job in the world that has such lousy benefits, yet we do our job proudly, with compassion and love, with little complaining, and the best care possible.
Though it won't change your work level, I do hope you can be financially rewarded to some extent for all you are doing.
Hugs, Dan
I'm wondering if Medicare would care to cover Respite care so Caregivers would get some time off - you folks are working 24/7/ 365 not 9-5 M-F with weekends off and sick days. What would happen if you came down ill? What help do you get and how? I would love to know the answers to these questions!
Medicare does not cover Respite care. I believe Medicaid does, but Bob doesn't qualify for Medicaid. There are some state/county programs but Bob is either "too old" or "too young" or "too rich" (ha) to qualify. I don't know what would happen if I got too ill to do this--so far so good! Probably Bob would end up in a nursing home... I get no help, except from my friend Chris, god love her, who sits with Bob so I go grocery shopping and run errands.
People tend to think there is all this "help" out there, I know I used to! then you find yourself in this situation and learn the truth about how the system works....
hey it's me Barbie aka Lori , don't forget overnight tube feed monitoring . He is unable to remove himself from harm so he needs 24 hour monitoring for safety so
......good luck
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