Sunday, February 23, 2014

A Day with a Caregiver: Updated for the #Blog4Care Carnival

Caring Across Generations is publishing a #Blog4Care Carnival at the end of March and I am thrilled to help them with their goal of showing what caregiving is like from all different perspectives.  This post opened my own eyes about a caregiving day from the perspective of a working caregiver. I am not special – I am one of millions of working caregivers who have days similar to this.

On this particular day, I was juggling taking Robert to a dental appointment and working from home.  

Richard and I recently participated in a project created by Denise Brown, founder of the non-profit, Chris MacLellan, founder of, and Rajiv Mehta, founder of Unfrazzle.

One of my favorite moments
It is easy enough to do: keep track of your caregiving day on a log provided by Denise and Raj.  Denise, Chris and Raj created the log and are asking caregivers to participate (there’s still time to do so – visit here for more information.) 

Before completing the log, I thought my caregiving day consisted of getting Robert ready for Day Program, laundry, making dinner, fostering a bond between Robert and Taz and keeping all of his medications straight (and in stock).  I wondered why I didn’t have time to write or why a trip to CVS for incontinence supplies seemed like a real treat. 

I wondered why I couldn’t write at 8:00 p.m. when I had a whole hour to wait until Robert’s last medication dose.  Instead, I was exhausted and wanted nothing more than to lie in bed and watch a brainless television show with my dogs and husband or play Words with Friends.

Okay, sometimes I plop into bed as early as 7:30 and, yes, my 20 year-old self is mocking me right now. Heck, I’m pretty sure my 40 year-old self would be appalled. 

I thought I must be doing something wrong; I know I have it easy compared to many other caregivers.  Maybe I need to be more organized. Maybe I need more checklists (as many of you know - my solution for everything).

The day I kept the log, I thought it was an atypical day.  After all, Robert wasn’t going to Day Program because of a dentist appointment and I was working from home after the appointment instead of going to the office.

Here’s an excerpt of my log (the actual log has more information to keep track of and also tracks an entire day):  

Time:               Activity:

5:30 a.m.:        Wake up; discuss Richard's night and how he slept;
5:40 a.m.:        Prepare water (add thickener); dispense meds; 
                       add antibiotic;
5:45 a.m.:        Turn off oxygen & humidifier; ask Robert to get up;
5:46 a.m.:        Put Robert’s word search book in his walker basket; 
                       put glasses & pens & calendar on kitchen table;
5:47 a.m.:        Notice Robert is having a seizure while still in bed; 
                       lasts 10 seconds; watch & wait;
5:47 a.m.:        Help Robert out of bed; watch him walk to the bathroom;
5:49 a.m.:        Remove wet bed pads and put in garbage;
5:51 a.m.:        Help Robert remove his shirt, pants, briefs; 
                       put wet clothes in washer and briefs in garbage; 
                       watch Robert sit on toilet;
                       remind him to use urinal guard; 
5:56 a.m.:        Remove wet sheet & blankets from bed; put in laundry room; 
                        load washer;
6:00 a.m.:        Ask Robert how he's doing in bathroom;
6:00 a.m.:        Write down earlier seizure in his seizure log;
6:00 a.m.:        Fold blanket that isn't wet; put away in closet; put foot & head wedges into garage;
6:10 a.m.:        See Robert standing up wiping himself; I tell him to throw away the TP and ask if he needs his rear-end wiped. He says he still needs to wipe his penis; I ask him to throw away the toilet paper; we have a discussion about what he needs and I ask him to sit down to wipe. He finishes wiping;
6:15 a.m.:        Warm up water for bath; lay towels on floor; put down bowl;
6:17 a.m.:        Wet washcloth and hand to Robert; he washes his face; I wash his hair; rinse his hair; get excess water off hair and he dries his face; prepare wet cloth for him to wash whole body; give to him;
6:25 a.m.:        Add thickener to water; give Robert medication;
6:26 a.m.:        Ask Robert to stand so I can wash his back; he has to go to the bathroom again; I hand him urinal guard;
6:28 a.m.:        Take out garbage;
6:35 a.m.:        Check on Robert; ask if he's done says he has to be wiped but is holding toilet paper; told him to throw that away; he continues to sit and then begins to wipe his eye because he says it's bothering him. I wipe his eye with a washcloth;
6:37 a.m.:        Ask Robert to stand so I can wash his back; I wash and then dry his back; spray body spray on him; give direction to put hand on counter and railing to sit down;
6:38 a.m.:        Give Robert his briefs, shoes and socks and insert pad into 
6:39 a.m.:        Remove fitted sheet from mattress pad; roll up mattress pad and put out in the garage; put sheet in washer; put away sofa bed; check on Robert's progress dressing;
6:45 a.m.:        Help Robert put his briefs on;
6:46 a.m.:        Prepare jeans (put handkerchief in pocket; washcloth in other pocket; wallet, comb & fingernail clippers in pockets); add belt;
6:47 a.m.:        Check on Robert's progress; give him the jeans; help Robert 
                       put on his socks;
6:50 a.m.:        Give Robert choice of shirts (show him two, he picks one);
6:55 a.m.:        Check on Robert's progress; remind him about 
                       dentist appointment this morning;
6:56 a.m.:        Add thickener to water for next med dose; give Robert nasal spray; help him put on his shoes (I asked if he needed help, he said yes); offer to help with shirt and he declined offer;
7:05 a.m.:        Go upstairs to shower; Richard takes over watching Robert; I check/answer work emails;
7:35 a.m.:        Give Robert his medication;
7:36 a.m.:        Discuss changing pain doctors with Richard and the referral form I got for new doc;
7:40 a.m.:        Remind Robert he has a dentist appointment and needs to finish up breakfast; seems groggy and slurring words, falling asleep; seems "post-seizure" like;
7:45 a.m.:        Finish getting ready for the day (me);
8:00 a.m.:        Ask Robert if he wants to shave and brush his hair first and then brush his teeth. He says he does; I remind him of his dentist appointment and give him 10 minutes to shave and comb his hair;
8:05 a.m.:        Drink coffee that Richard made; check personal emails 
                       and texts;
8:10 a.m.:        Brush Robert's teeth; explain what to expect at the dentist;
8:20 a.m.:        Transfer clothes from washer to dryer; start another load in 
8:25 a.m.:        Put Robert's coat on; ask him to sit down for a minute; get his meds in the event of prolonged seizure while out;
8:30 a.m.:        Take Robert to the car; put him safely in; 
                        load walker in trunk;
8:40 a.m.:        Robert gets mad at me for rolling down the window when I am crossing a busy street. I explain to him the driver needs to do what they need to do for safety even if the passenger doesn't like it;
8:55 a.m.:        Arrive at dentist; walk Robert in and sit him in a lobby chair; ask him to keep his helmet on since they will call him back shortly;
9:00 a.m.:        Go out to the car to get the "car bag" in case of an accident;
9:05 a.m.:        Robert is called back; help him stand up; walk him back to the dental chair; put bed pad on chair in case of an accident; help him into chair; fold up walker, etc. and get out of the way;
9:10 a.m.;        Sit with Robert while he's getting work done; check/answer work emails as well as personal emails/texts;
10:20 a.m.:      Robert is finished; walk him to lobby and set him down;
                       I go pay;
10:30 a.m.:      Robert has accident in lobby (crap - no pad!); I take him to bathroom to change and clean up;
10:45 a.m.:      Apologize to dentist office and offer to pay for new chair or 
                       cleaning of chair;
10:46 a.m.:      Put Robert into car; put walker into trunk; look for dumpster for wet briefs/pads - 
                       no luck; put in the trunk and leave;
11:10 a.m.:      Stop for coffee!
11:15 a.m.:      At home - get Robert out of the car; his walker basket broke and I had to explain that to Robert since he was asking why it wasn't attached to his walker; walk him into the house;
11:20 a.m.:      Help Robert remove jacket; repack his car bag; 
                       start laundry with his wet clothes;
11:25 a.m.:      Notice Robert is pressing on himself which is a sign he needs to use the bathroom; I ask him if he needs to go to the bathroom and he agrees he does; help him up and into bathroom;
11:30 a.m.:      Put on gloves and take off one of the two briefs he's wearing because it is wet; replace the pad in the brief;
11:35 a.m.:      Robert is finished; wipe off bottom and hand him sanitizer wipe to wipe hands; take out the trash;
11:40 a.m.:      Take vitals because Robert is moving slow and seems groggy;
11:45 a.m.:      Check on Robert since he is shaving and brushing his hair;
11:50 a.m.:      Log onto computer - check personal emails; check news;
11:55 a.m.:      Help Robert out of bathroom; get him settled on couch; 
                       start TV show for him;
11:57 a.m.:      Fold bedding from dryer;

And that’s the morning . . .

After keeping track of all the activities in a caregiving day, I came to several realizations:

  1. Tasks may only take a minute or two but, boy, do they add up and they are never-ending;
  2. There is no typical day in caregiving.
  3. No wonder I am exhausted!
Every day in caregiving is different. Sure, there might be some of the same tasks (like laundry and helping Robert clean up in the bathroom and keeping his razor charged) but every day is different.  Some days have doctor’s appointments, some days Robert is moving extra slow and some days he is returning home excitedly telling us about his Valentine’s Day haul of cards (“They’re all from girls!  They looove me!”).

Richard and I had a video chat with Denise and Raj and discussed doing the log and the realizations we came to after keeping track of the day.  Our conversation is below.

While talking with Denise and Raj, I realized that it doesn’t make sense to compare our day to someone else’s day.  What might be easy for someone else might not be easy for me. While I might have to do something one day, I might not have to another day.  My morning log seems like a lot to some and pretty easy to others.  There are days that the tasks really aren’t that much.

Every day is different.  Every caregiving situation is different, yet we can all learn from each other because much of what we feel is the same.

Doing the Caregiving Day log also made me realize I am going to be a little kinder to myself for not getting more done or writing more.  I am also going to cherish the times that I am actually able to find the time to write and am going to appreciate what I am able to get done.  I need to remind myself that we are all doing the very best we can.

Caregiving is in the details but also about the moments. There was a moment in the afternoon that Robert made me laugh and later in the day I was able to spend a few minutes watching Family Feud with him and laughed some more. Those are the moments I want to cherish when I look back on this time caring for Robert.

Tell me about your caregiving day in the comment section and, please, contact Denise to complete the Caregiving Day Log. 


Denise said...

Thanks so much for writing about your experience with the log. When I look at your log, I see a day with just about every moment spoken for! It's really and truly amazing what you accomplish each and every day. :)

Trish Hughes Kreis said...

It's certainly no wonder pjs look good at 7:30! :) Thank you for asking us to keep a log of our day. It really was helpful and eye-opening. Thank you for what you do!

Cathy said...

This story is remarkable and you are inspiring. Bless you. I shared it all over Twitter and FB.

Unknown said...

One more time - kudos on great idea and great example for us all! Praying you have blessed night and good rest!