If you are a caregiver for someone who is totally dependent on you for everything, you know that there is no such thing as a “quick run” anywhere when you take the person you are caring for with you. Today, Lynn and I had an appointment with an attorney to sign our wills, power of attorney, and medical decision-maker documents. The location was approximately 35 minutes from our home so I estimated we would be gone for two maybe two and a half hours. I also planned to stop at the post office, return something to the drug store, and stop at the bank. Here’s how it went…..
The appointment was at 10:30 a.m. so we got up at 7:00 to get ready. After cathing Lynn and arranging things within his reach, I went to put on clothes and prepare his morning supplements. Then I returned to unstrap him from his peddler, put on shoes, etc., and return to the kitchen where he took his supplements and exercised while I ate breakfast. Then it’s into the bathroom for his morning routine, and to bed to rest while I checked messages at work between answering his calls for assistance. Then getting him up, dressed, situated into his wheelchair, and groomed for the trip. As he’s waiting, I assemble his “bag” of supplies to go out….saline nose drops, Valium for spasticity, his cell phone, cold water with a straw, a smoothie for a snack, supplies for up to four catheterizations, getting what I needed for the post office, taking it to the van, cathing him one last time, getting the van ready, securing him into the van and locking up the house.
Then we’re off to the attorney’s office. Almost there and he needs to be cathed. Pullover and take care of that (if you’ve never cathed someone who is in a wheelchair while they’re in a van, you don’t know what you’re missing). We get to the lawyer’s office, I find a place to park in the shade (it was supposed to be near 80 today) and go in to say, “we’re here.” Lynn can’t go in because the building is not handicap accessible for wheelchairs (as we found out the hard way the last trip when his wheelchair got stuck in loose rocks when he drove off the sidewalk trying to maneuver around bumpers of cars). Our lawyer is very nice and he gets everything ready and brings the papers and witnesses to Lynn in the van. All’s well and we leave.
The next stop is the drugstore. He stays in the car and I run in to return a mobility table that was supposed to be able to attach to his wheelchair which didn’t. Fortunately, that was a five-minute stop. Back to the van and he needs to be cathed again but where we are is too public. I’m craving caffeine so we go to Starbucks where I can park away from viewing eyes. Another “in van” catheter experience. Then coffee for me and tea for him after I help him get his smoothie for a snack and strap him in again so we can move on to our next stop.
The next stop is the bank back near our house. He needs to get out this time because we are setting up a new account by closing his business account. That takes about 20 minutes plus we got a safe deposit box for the wills. The bank was easy to access except doors had to be held for him to drive the wheelchair though since there were no automatic openers. Back to the van, strap him back in again, and he needs to be cathed again. I need spinach at Foodlion so we go to the far end of that parking lot, I cath him, again, run inside, and return to realize the post office, which is our final stop, would be closed now for lunch. No matter, Lynn is exhausted by now and so we head home for me to feed him and hook him up to his peddler to help him relax.
I unload the car, set everything back up for his easy reach, run to the post office alone (which I must say is much easier and quicker alone), and get back in time to, yes, cath him again. By now it’s 2:30 and I’m ready to begin my day at work…
It’s great to be able to get out of the house now using our van which makes the option to go places actually a possibility. However, travel is no easy matter. Supplies must be taken, nourishment must be considered, and comfort must be planned for. Much like taking a small child somewhere, travel takes significant planning but somehow taking someone who is 6 ft tall and weighs close to 200 lbs is a bit more complicated than taking a 25-pound infant…
Gosh sounds like our trips, except Tom only cath 3 sometime 4 times a day. I have a trick for you if it is helpful. Tom can not use his hands so when I cath him I put his gate belt around his knees and hook the handle of the urinel on the gate belt that way I have both hands free to cath.
I hadn’t thought to use the gait belt. I had been using one of the rubber band type strips that physical therapy left here but they narrow down so much that they get uncomfortable if he wears them very long. He uses the bands to help hold his legs together when he’s up in the wheelchair because his inner thigh muscles are very weak. Think I’ll try the gait belt to see if that’s more comfortable. Thanks for the idea.
Donna
Donna – I saw you began following my blog, and since you’re a caregiver to someone with MS too, I thought I’d come over and read some of your blog. This was a hard post to read, as it reminded me of the difficulties I had trying to balance all the demands in my life when I had a fulltime job. You can’t satisfy all the demands and it’s an incredible struggle trying to.
Since I care for a woman, the handling of bladder issues are different than what you folks have. But, it’s clear your husband has problems with urinary urgency … perhaps a spastic bladder? Has he ever tried a condom cath to use when you’re out for short trips so you don’t need to use the intermittent cath approach? Or, has he considered a subrapubic cath? Skip has used a foley cath for years, and I can still remember what a relief it was to go from the intermittent cathing to the foley. There are issues with the foley, but nothing like the daily problems and urgency she had with the self-cath.
Hope my questions/suggestions aren’t too invasive. Just some insight from someone who is living many of the same problems as you. I admire your fortitude!
Thanks for the suggestions. He does has a spastic bladder and is on medication to decrease the pressure in the bladder so that urine does not back up into the kidney and cause damage. He has the urge to go but not the ability so a condom cath no longer works. I use a foley when I have to go into the office to work but he uses a peddlar most of the day to help with the aches and pains in his legs and the constant movement of the catether against his leg causes too much irritation to use it very often. I expect one day a subrapubic is in our future but will try to hold out longer. Thanks for the insights and I look forward to reading more of your blog as well.
Excellent peek into what a day in the life is like and by the way kudos on getting you wills, power of attorney, and medical decision maker documents in order. Way too many have not taken this critical and necessary step.
Caregivingly Yours, Patrick