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Thursday, January 31, 2013

A Typical Day is Worth--- what?

As part of the process to figure out how much money it will take to take care of Bob for the rest of his life, the attorney's office asked me to keep track of one entire day's worth of all the "personal care" I do for Bob on a typical day. They wanted exact times and duties. So I did, and thought I'd share it here:

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.


The idea here is that they want to figure out how much it would cost to "replace" me! 
There is also talk of asking for the hospital to pay me back wages for the last two years+.

hmmmm, wonder how much that would be?



kdstentzel said...

I'm crossing my fingers for you - getting back wages would be a win.

Rebecca Dutton said...

Being a writer is powerful in many ways.

J.L. Murphey said...

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.

wrinkles said...

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

Susan said...

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 -:}

Anonymous said...

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

Anonymous said...

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!

Diane said...

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....

Anonymous said...

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