Caregiving is physically exhausting and my priorities are not yours: Don’t judge my sloppy housekeeping, delayed responses to phone / texts, declining to socialize, dirty car, un-styled hair, simple dressing, or yard that needs attention: my spouse who needs care COMES FIRST.


Today: THREE medical related appointments, scheduling 4 more for follow ups over the next two months, (O’ and one annual check up for me!) Now need to also schedule two blood lab appointments, for various rebellious or worn out body parts (they don’t play well together anymore)…

(We will skip the toileting, grooming, breakfast details – see how nice I am?)

Appt #1, drove 8 miles, 10 a.m. waited 45 min, for a 15 min appointment, to go over the spinal surgery he had in April, med changes (two new ones) and current situations with bladder (indwelling cath fail problems) with hubby’s primary care doctor (good guy, busy office).

Hmmm, his 400 pound power wheelchair is acting up… what’s going on with that thing, it keeps shutting itself off like it has a short. Okay working now… O’ Lord please keep it working… O’ you want McDonald’s, sure, its on the way!

Appt #2, 12:30 pm, new Physical Therapist came to the house (yea!) to have hubby stretch big rubber bands and move his neck (preparing for the brace to come off in a month), while I ran to get groceries, and birthday gifts. Picked up: a card, two potted plants (he loves plants) and small tiramisu cake (his favorite). Got home, presented gifts (happy hubby!)

Answered some work emails. I am retired, but work 30 hours outside the home. We have a backup caregiver through ALTCS who comes when I work – I love this lady! Thursday’s are my off day, but work emails are urgent and they pile up. Oh and its the first of the month, pay the bills!

Appt #3, 3:40 pm, drove 25 miles to the Urologist to deal with a recurring catheter fail issue. Took 20 minutes (after waiting 40 min) trying to get the Urologist to truly understand that we cannot AFFORD a third week, the specially compounded $150 a week, $150 A WEEK ($600 a month), super duper bladder medication that is inserted in the catheter, that has to be used every single day (only works when its used, doesn’t linger around at all) regardless of how well it works. Super duper med, by the way, is not covered by TWO insurances he has: Medicare or ALTCS. Oh, there is another kind you say, a pill, that only costs us $25 a week, also not covered by his insurance… sure, we will try that one.

Oh, he needs two blood tests: one in two weeks to see if its strong enough, and then one in two months, got it. We wait 20 minutes for paperwork to get done to fax the script to the ONLY PLACE IN THE VALLEY that makes it, but they DELIVER (nice) – can we see that fax to verify our address? No, sorry, we don’t live on YIELD street, wrong address, YALE Street. They would have had a hard time finding us. Oh yes, so glad we asked! Wait until they REFAX.

Getting on the lift-equipped van: the electric wheelchair dies… Its 102 degrees outside, and the van is about 115 degrees… Put it in manual mode, okay, muscles get er done. Got him in and secured, only took 15 minutes. Sopping sweat, drive 25 miles through rush hour traffic to get home to make dinner. Praying the whole way home that the wheelchair can be fixed. O Jesus!

Get home: go get the Allen wrench to see if I can fix the wheelchair, otherwise we are calling 911 for big strong fire fighters to get the 400 pound wheelchair and 225 pound hubby out of the hot van…. I FIXED IT, Thank you JESUS! (Loose connection on the switch), no 911 today! Dinner will be ready soon! And I need to prepare for work tomorrow…. Happy Birthday Love!

The triumphs and challenges of caring for your loved ones is intense, but well worth it. If you read through this far, thank you. May you be Blessed.


Please understand, I am NOT complaining, just recounting what caregivers do. O’ and today is hubby’s birthday! Happy Happy! (After typing this I better understand why I am falling asleep in the recliner, at 7 p.m. after making hubby’s favorite meal for his birthday.)

By Michele Stokes

Originally posted to our Facebook page.

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