A Day with a Family Caregiver

Richard (@kreisler) and I recently participated in a project created by Denise, Chris MacLellan, founder of ThePurpleJacket.com, and Rajiv Mehta, founder of Unfrazzle.

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 (visit here for more information.)

A favorite caregiving moment

A favorite caregiving moment

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 & 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 briefs;

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 washer;

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, grab a log to complete.

Related
Avatar of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

17 thoughts on “A Day with a Family Caregiver

  1. Avatar of DeniseDenise

    Hi Trish–I am so glad you shared part of your log with us. Sharing about your log helps us with our greater purpose–really showing the reality of a caregiving day so services and technology truly make a caregiving day better.

    I’m curious: Do you think you’ll use the log again? Just wondering if it’s something that would be useful to use once in awhile, something like a check-in tool.

    Reply
    • Avatar of TrishTrish Post author

      Denise, I loved doing the log and found it very helpful. I plan to use it again to keep track of specific things like using one to track just how many jokes Robert tells in a day to make himself or others laugh; maybe one to track my observations of @kreisler‘s pain level – there are so many possibilities. I appreciate what you, Raj and Chris did to put this together. Thank you!

      Reply
  2. Avatar of Gail KrollGail Kroll

    Dear Trish, I haven’t even found the strength nor time to use the five logs I copied to start out. I commend you for doing so. Thanks too for sharing like Denise says. I don’t know how you work and care give all the time! God Bless you because Robert and your husband are blessed to have you along in your journey of a lifetime!
    love you, Gail xo

    Reply
    • Avatar of TrishTrish Post author

      Gail, Richard and I keep other logs for Robert’s care so we were used to keeping track of details. It just takes some getting used to and committing to a day to do it. I think you’d be amazed at how much you do once you do the log! I look forward to reading about your experience with it, if you decide to do it.

      Reply
  3. Avatar of PegiPegi

    Oh my, once again I’m exhausted! Seeing your log made realize how much I did not put in mine, everyday things I take for granted just didn’t make the log. Talk about detail oriented, thought I was queen, but I turn the crown over to you. It was quite interesting to read, I can’t imagine your thought process when you reviewed it! It certainly justifies you going to bed, or vegging in front of the TV any time you get a chance. Thank you so much for sharing. Also have to say, every time I see that grin of Roberts, it just makes me smile.

    Reply
  4. Vicki Miko

    Thank you for the post and bless you all. Take a bit of comfort that many, like myself, understand. Sometimes just knowing that is enough for the moment ;-)

    Reply
  5. Vicki Miko

    Thank you for the post and bless you all. Take a bit of comfort that many others, like myself, understand. Sometimes just the thought of others’ compassion is a good thing and enough for the moment ;-)

    Reply
  6. Mark

    Excellent conversation and information discussed. Should be required that all remote family members watch…assuming they have the “time”…to understand the day in the life of a primary caregiver.

    Having cared for a Mother that suffered from Dementia/Alzheimer’s for some nine years, there was little appreciation, and an enormous disconnet among remote family in understanding the complexities and time it takes to properly care for a loved one. Your discussion group on the log brings to light many of the challenges…and the time element. I thought the discussion on “emotions” was an area that is often pushed to the side by the caregiver, unrecognized or properly addressed…as many caregivers become robots. In the aftermath of my Mother’s passing, it came flooding back.

    Once again, excellent top and discussion. Mark

    Reply
    • Avatar of TrishTrish Post author

      Great comment, Mark, about the emotions. Sometimes I honestly do feel like I am just going through the motions (or being a robot). I sometimes wonder what is wrong with me! It was great to have to think about the emotion of what I was feeling at the time. There are certain things that still “get” me but others, I have just set it aside and really don’t have a strong feeling one way or the other. I’m sorry about the experience you had with your extended family members. It is difficult for some people to understand exactly what we are doing. I think intellectually they may understand but it’s a whole new ball park if they had to do the day-to-day tasks themselves. Thanks for watching and commenting. I appreciate what you added to the discussion!

      Reply
  7. Marcia Jarrell

    WoW! I was tired just from reading your morning; I thought it was a 12-hour day at least. As caregivers, many people don’t realize how many small things turn into big things, especially if the small things aren’t accomplished. Your brother is so fortunate to have a loving caregiver, Trish, and I know he also is grateful for your loving care.

    Thank a caregiver today; it doesn’t matter who they care for, just thank them for being there for that person.

    Reply
    • Avatar of TrishTrish Post author

      Thank you, Marcia. You are so right about taking care of the little things before they blow up into big things. Boy, is that the truth! We’re all in this together and this site has been a wonderful help through our experience. I feel like reading everyone’s comments and blogs and support of each other is so helpful. I thank each and everyone one of you! Take care.

      Reply
    • Avatar of TrishTrish Post author

      Thank you, Tracy. It’s amazing to me how many caregivers are out there that have similar days. The compassion and care people show each other really cements my belief in the goodness of people. Thank you so much for commenting!

      Reply
  8. Avatar of EllysGdaughterEllysGdaughter

    Trish, Your day is truly amazing in all the details. I wonder how many assisted living homes take care in all those details. Robert is soo incredibly blessed to have you as his caregiver, actually, Richard too!!! I would love to read your story about how you came to be Robert’s caregiver. My friend and I enjoyed your book about caregiving for your mom and I know there is so much more to your “story”!!!

    Reply
    • Avatar of TrishTrish Post author

      @EllysGdaughter, I think there are lots of assisted living facilities or Board & Care homes that are loving and caring of their clients. Unfortunately, I haven’t had much luck in finding one for Robert (two tries; several problems). Maybe it is because I am picky about the details and they just don’t have the staff to handle those types of details. Ah, well, a conversation for another day. Thank you so much for reading my book and for sharing iwth your friend. One of my next books will be about caring for Robert but in the meantime I blog here and at http://www.robertssister.com. It’s always such a nice treat for me when I hear people read my book and enjoy it. I have @Denise to thank for pushing me to finally finish it. I owe her so much! Talk to you soon. Take care.

      Reply

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