If you’re new here, my Aunt MERJ who took care of me when I emigrated to the United States is slowly dying essentially. The doctors don’t say this, but I do. She isn’t able to consistently do what are called activities of daily living and instrumental activities of daily living.
Activities of Daily Living:
- Continence (bladder and bowel control)
- Getting dressed
- Transferring (getting from one surface to another, e.g. sitting to standing)
Instrumental Activities of Daily Living:
- Cleaning and maintaining the house
- Managing money
- Moving within the community, including managing transportation
- Shopping and Preparing meals.
- Managing communication, like telephone and mail
- Managing medication, compliance and adherence
So for example, I have taken over managing Aunty MERJ’s finances because she was having the maintenance man help her write her rent checks. She didn’t take her meds all of 2018 because she said she wasn’t sick although she has a laundry list of chronic medical conditions that are treated with medication. And she didn’t go to her doctors’ appointments because she said she couldn’t find the place. While not all days are like that, most are. So, Aunty MERJ needs a lot of help beyond what I can do on my own.
To compound everything, she lives in Florida, I live in North Carolina, and she recently went to the emergency room in Maryland that lead to follow-up visits while she was visiting family there.
So over the course of this summer, I took on the feat of seeking help from different government and public assistance programs. And what a feat it was! Programs exist, you just have to keep clicking. They say all the world’s secrets are on Google page 2, well so are some resources for seniors.
To say the least, it’s been a trying couple of weeks and to make matters worse, my family seems to think these things just happen over night. But here’s what it’s really been like:
- Call doctor’s office in Maryland that is charging $50 for a no show fee now that Aunty MERJ is back in Florida.
- Get all office and ER visits from Maryland sent to primary care. Cll them, make the request, send the appropriate firm, follow up
- Pay Metro PCS manually monthly
- Pat rent monthly manually
- Pay electric bill manually monthly. But where’s the bill? Oh! It’s been sent electronically to an email no one knows or can access.
- Dispute each new random charge or bill that shows up periodically (BOA, Geico, hospital bills, Amazon, credit cards…); do you call as yourself or the patient, which number? What’s her log-in or account information?
- Figure out how to remove fraud block from her bank account in order to pay her bills
- Arrange transportation to and from medical visits
- Call doctor to get access to results to med visits
- Figure out how to get patient to give you access to health records
- Car needs repairs…get car to and from repair shop
- How to pay them
- Car was towed in repo, has scratches, figure out who tow company is, call them, dispute scratches, get them to fix it, follow up (get her to and from repo man 1.5 hours away)
- Call her everyday, provide emotional support, be wary of surly words
- Be reminded she is scared and sick and frustrated
- Call her everyday, figure out what new need she is trying to communicate, find a solution, follow up
- Spend two days calling and getting redirected for special assistance requests; Follow up with North Carolina special assistance; go to 2 hr in person interview during the work day
- Figure out how to get copy of Aunty MERJ’s pension form with gross amount on letterhead
- Get doctor to fill out FL2 form for North Carolina
- Figure out how to get access to bank statements for last 5 years, oh yeah remember the account is blocked until patient goes into bank to resolve
- How to get patient to bank to resolve?
- Figure out how to get special assistance in Florida, fill out form, answer 45 minute questionnaire; follow up; get doctor to fill out form; follow up
- How to get transportation assistance in Florida
- Spend thirty minutes calling lots of numbers that say they transport seniors; spend more time getting redirected, be made aware of months and year long wait lists just for transportation; fill out 6 pg form; mail, do not fax; get doctor to fill out form; follow up. That’s step 1. To get reduction in fee, find and fill out a second set of forms that must be mailed; follow up
- Find someone to pick up meds and help administer
- Find someone to get groceries, but she can’t communicate her needs, so use ESP to figure out what she needs
- Get Meals on Wheels; find number, call, leave message, wait for response, follow up
- Cook food, clean up
- Wash clothes
- Clean house
- OH, and then remember to go to work, be lively, make no mistakes, clothe and feed yourself.
So if anyone else is going through this, I hear your cry!
Tips from the other side:
- If your parent isn’t sick but not all the way well, at least have them identify all accounts, online and otherwise. If they’re willing have them share log-ins and passwords in a safe place.
- Keep a notebook and folder for notes and important papers
- Write down dates, times, names of everything and everyone
- Keep copies of everything
- Anticipate 2 or 3 follow-up calls for each task (this prevents aggravation later on)
- Let organizations know you’ll be calling to follow-up in x days so you don’t become “that person”