Very few people would answer an ad for a caregiver. Wanted: Individual willing to drop everything to care for ailing individual. Must be thick-skinned, have a strong stomach and have a good understanding of technology; a multi-tasker. Have good transportation and be willing to work nights and weekends. Applicant must have the patience of Job and be as stubborn as a mule; determined. No benefits, vacation or sick time, no salary.
Thankfully I was able to retire and commit to being with him at the hospital for the entire time. That itself created issues. Retirement meant my insurance coverage ended on August 31st. I signed up for COBRA insurance the minute I got the notice and paid the premiums on-line as soon as I could create an on-line account. Still, as we were preparing to leave the hospital on the 19th of September, administration was in a bit of a panic to find that my insurance had been terminated effective Sept 1st. They hadn’t billed for the transplant yet. Yikes! I’m sure that if I had let someone charge up hundreds of thousands of dollars only to have their “credit card” denied on billing day, I would probably be a little freaked out myself. It took a little doing but we managed to leave that Monday with supplies added to our hospital bill so I didn’t have to put out any ransom money to leave.
The technology piece is overwhelming. Test results, insurance, billings, appointments, lodging, you name it; it requires a level of computer savvy that I fear the average person might not have. With technology comes an enormous amount of patience and a lot of “fake it until you make it”.
Caregivers should be detail oriented; as you must be able to administer medications several times a day. Before admission to the hospital, he had so many pills that it required a spreadsheet. That was only the tip of the ice burg. Currently, it’s a total of 41 pills, creams, drops, liquids and one 8-hour IV each day.
If you are like me and typically a very organized person, additional stress comes into play when you begin living out of your vehicle. Living in his hospital room with him for the first twenty-two days, followed by 7 nights in a hotel alone and 7 nights in the Airbnb in Dexter. I had food, cookware, medical supplies, medicines, clothing, electronics, business files, you name it; all in the Traverse. That all had to be transferred to the store van so I could take the Traverse to the Body Shop for some repairs this week. Driving to the hospital in the work van yesterday, a vehicle kicked up a stone in a construction zone and now I have to file a glass claim and deal with that problem one of these days. One step forward and two steps back.
Unless your memory is better than mine you better be a good list maker. Being home one day a week to use the printer to print paychecks and the schedule or a report you’ve been working on all week or grab that file you need for next week’s project takes some skill. What to take home, what to bring back to the rental.
Money management. For the first time in years, I need to keep an eye on my bank balance. With most our bills on auto-pay and neither of us drawing a paycheck currently, I need to make sure and move money around before the well runs dry. Thankfully, we have very few bills and we manage our money well so it’s not a matter of where the money will come from; just which account. We are very glad we have money squirrelled away and our friends and family have been very generous with their gifts of money. I can’t imagine having to worry about money on top of everything else.
Another necessary trait for a successful caregiver would be determination. Today was a free day. Our first full day at the Duck Lake house without appointments at the hospital. Sounds great but some how it’s 5 p.m. already. I made oatmeal and made arrangements for back-up care for Scott tomorrow. That left the majority of the day to tackle Scott’s on-line application for social security disability and look into our AFLAC claims again. And yes folks, it took all day to lock myself out of Scott’s SSA account, get it unlocked and make a dent in his claim for disability. I end the day further ahead than before and more determined than ever to get this accomplished without the aid of an attorney.
Unfortunately, my AFLAC claims don’t appear to be any closer to being in my bank account than they were weeks ago; despite involvement from my agent. Oh – and I managed to place my first Shipt order today. If I’m not careful I might get in step with the times by the time this is all behind us. At least a heck of a lot closer than I planned on being.
It would be pretty easy to crawl up in a ball and let frustration and depression take its toll on both of us. Instead, I am constantly reminded that things could be worse. As I waited in the lobby for an hour and half for them to fill a prescription for melatonin (something that non-patients can just pick up at Meijer or Walmart), a young man was yelling at his wife because he couldn’t get his pills (opioids) refilled at the pharmacy; like yelling at her would fix that. The nose surgeon’s office needed to talk to Scott and he was upstairs finishing his blood transfusion; I wasn’t on their list of authorized people to talk to. So I had to give up on the scripts to head upstairs; returning my pager. Not before standing in line behind a woman fighting with her colostomy bag while trying to pick up her own prescriptions with her IV pole and dressed in her robe and slippers. I left frustrated but reminded that things could be worse.
Finally, the job requires love. A kind of love you can’t buy. That’s not to say that there aren’t people out there doing this for a living; but they certainly aren’t getting paid what they are worth. Particularly those working for patients that have lost their will to live. Scott has kept a very positive attitude. At his worst he is quiet and unresponsive; very little negative talk or orneriness. I don’t know what I would do if he didn’t have such a strong desire to get through this and on with the rest of our lives. I can’t imagine being in a loveless marriage and being called upon to take this assignment. Thankfully, I feel like I’m one of the lucky ones.