Finding Your Caregiving Superpower: Reflections from a Blind Caregiver of a Parent with Dementia

by Catherine Samuel

From the Editor: Catherine Samuel serves as the Director of Disability Resources at Carnegie Mellon University in Pittsburgh, Pennsylvania, while also working part-time as a consultant for a data management company. For fun, she plays the trumpet with two community musical ensembles; enjoys hiking, tandem biking, kayaking, and cooking; and is studying Hindi. Yet somehow she still found the time to write this helpful article about her experience as a blind caregiver. Here is what she shares:

Beginning the Caregiving Journey

My mom’s cognitive and physical health has been declining for some years now, and she was recently diagnosed with dementia. My brother and I are both in our forties and have very full and busy lives. He is sighted and lives in Virginia, about fifteen minutes away from my mom’s assisted living facility. I have been totally blind since birth and live in Pittsburgh, Pennsylvania.

As her condition deteriorated, I began thinking seriously about what role I could play in caring for my mom. When I was much younger and she was caring for her aging parents, she was constantly dropping everything in order to drive six hours each way to their assisted-living home to see to their affairs in person. Consequently, the model of caregiving that I was accustomed to was one that required a very frequent in-person presence, and so at first I feared that I wouldn’t be able to be of much help, given that I live about three hundred miles away and cannot jump in the car to head to Virginia on short notice. I also worried that on the financial side, there would be loads of physical paperwork to sort through, a daunting prospect even with great tools like Be My Eyes, Seeing AI, AIRA, and others. But I did not want to leave my brother “holding the caregiving bag,” so to speak, nor did I want to perpetuate the stereotype that blind people can only be the recipients of care, not the givers of care.

When Mom moved into assisted living, she updated her Living Will and Durable Power of Attorney (POA) documents, naming my brother as her medical POA and me as her financial POA. This was a surprise to my brother and me when we received these documents in the mail. I think we both imagined that he, as a sighted person, would have an easier time with the financial management and that I could do a lot of the coordination of her medical care by phone, no vision required. But that’s not how my mom set things up, so my brother and I took on our designated roles with open minds. And though my mom’s cognition is impaired, this decision that she made in a rare moment of clarity turned out to be absolutely the correct one.

Division of Labor

My brother is able to transport Mom to medical appointments and has been able to come to the hospital to support her during the few times she has been hospitalized in the last year. That’s not something I could do, blind or sighted, because of how far away I live. But it turns out that financial caregiving is almost as easy to do from a distance as it is in person. With everything being online now, I have not had to sort through mountains of physical paperwork to find records, review statements, and the like. All her bills are set up on auto-pay, and thanks to the POA, I have gained access to her accounts at the five financial institutions where she has assets. I have set up text alerts so that I am immediately notified of any transactions. This has proven to be important in thwarting some fraudulent and ill-advised transactions, since her reasoning and judgment have become more and more impaired as time passes.

I am a very organized person with an electronic filing system that helps me keep all of Mom’s financial records easily locatable and accessible. I keep track of when all her bills are due so that I can make sure there is enough money in her accounts. As blind people, we probably tend to rely less on paper records than sighted people do, so I would venture a guess that many of us have very organized electronic record-keeping systems—a real leg up when seeing to the financial affairs of a loved one.

However, financial caregiving cannot all be done remotely. Though I live out of state, I have found it important to visit my mom several times a year. For example, her two banks required that I present myself in person with my mom to submit the Durable Power of Attorney in front of a banker. They essentially interviewed my mom and me to ensure that I was competent to manage her finances and that she indeed desired that I do so.

Gaining online access to her credit card and investment accounts was also challenging at first because she had lost or forgotten all of her passwords. It was much easier for us to reset those together in the same place, with me operating the computer and her doing the multifactor authentication processes on her phone. While a last-minute trip to Virginia would be expensive and difficult, I am able to plan ahead by shopping for reasonably-priced plane tickets and making arrangements to be away from work for a few days.

In the last year, my mom’s finances have gotten a lot more organized and on solid footing. She has limited resources, but I have set up CDs and a high-yield savings account to maximize the liquid assets she has. This also means that my mom is less vulnerable to phishing scams such as the one she fell victim to recently. With her consent, she now has much more limited access to funds, so that if she were to inadvertently grant a scammer access to her account, they can do significantly less damage now than they could in the past.

Other Caregiving Opportunities

While I have found the financial caregiving side of things to be the area where I can contribute most, that may not be everyone’s experience. For a blind caregiver who lives closer to their loved one than any other family, helping with more of the day-to-day tasks may be the more logical path. While we cannot drive our loved one to medical appointments, we can call a rideshare service or lean on a friend for transportation. We’re the expert in helping them apply for paratransit, since many of us have navigated that process ourselves. We can be the ears, notetaker, and advocate at the doctor’s office or hospital. We can access their electronic health record through relatively accessible platforms like MyChart. Using tools such as Be My Eyes or AIRA, we can help them organize their medication. We can grab our trusty white cane or guide dog harness to head to the pharmacy and pick up a prescription for them. We can use apps like Instacart to order grocery delivery for them, prepare a meal, and do kitchen clean-up. We can help with bathing and toileting, if necessary, as long as we can communicate well and work together.

It Takes a Village

It is very much okay that we may need to ask for help for some tasks. For example, my brother helped me by physically locating, scanning, and sending me all Mom’s old tax records so that I could get them to the accountant. When my mom and I were clearing out her house and bringing everything she needed over to her assisted-living apartment, I located and hired a college student to help me find and pack her belongings and transport them to the new place. She reimbursed me, but I did the legwork she could not do in finding the helper and organizing the weekend.

As is the case for any caregiver, we do not need to do it all by ourselves or play the hero. If we find the part of caregiving where we are best suited to help and collaborate with friends and family to do the rest, we can make an incredibly meaningful contribution to our loved one’s quality of life in their golden years.

Tips for Financial Caregiving as a Blind Person

• While your loved one is still able to make decisions, talk with them about your potential role as their financial caregiver. Get a sense of how they would like you to manage things when the time comes.
• Have them review with you important documents such as their will, advanced medical directives, tax records, mortgage records, account passwords, and the like. Get electronic copies of these if you can. Since many of our older loved ones might rely on paper a lot more than we do, do what you can to avoid having to sort through piles of paper in an emergency situation just to keep their bills paid.
• If they are willing, have them work with an elder law or estate law attorney to sign a Durable Power of Attorney (POA) document that will allow you to start managing their affairs if they are no longer able to do so. If they become cognitively incapacitated and a POA is not in place, it will be much more difficult for you to gain access to their accounts. So having them prepare the POA ahead of time is the best course of action, even if you don’t need to start using it until many years later.
• Keep electronic copies of the POA documents, tax documents, and login usernames and passwords to their accounts in an accessible, organized, secure, and password-protected place.
• Keep the original POA paperwork and label it in Braille if needed so you can easily identify it. Some financial institutions require that you show them the original, notarized POA, not an electronic copy.
• When meeting with a financial institution to submit the POA and set up joint access to your loved one’s account, have all your paperwork organized and all the information you may need at your fingertips. Your trusty laptop, Braille notetaker, or tablet may be helpful to bring along. The representative may have biases and pre-conceived notions about your capabilities as a blind financial caregiver, and you can avoid unnecessary and uneducated questions by showing them right away that you are organized and competent.
• If you find that the online interface for your loved one’s financial institution is not screen-reader-accessible, consider moving their assets to a more accessible platform. If you do this, remember to update all auto-pays that might be connected with the old account.
• Stay in regular communication with other family or friends who are also serving as caregivers for your loved one. For example, if someone else takes them to the doctor and you’re paying the bills, you’ll need to know if a bill for a co-pay will be forthcoming.
• Be clear with fellow caregivers about the tasks you’re able to do and the aspects of caregiving where you may need help so that you can agree upon who’s doing what.

Conclusion

As children, most people do not contemplate the role reversal that many of us find ourselves in as adults, where we become the caregiver and decision-maker for our parents. As blind teenagers and young adults, we may not have been the ones grandpa and grandma relied upon to run errands, put together their new mobility scooter, or drive them to the doctor. We may constantly receive subtle and not-so-subtle messages from society that we should accept help from others and that we are not expected to be the givers of help. So we may feel uncertain about taking on this responsibility.

Yet most of us likely also feel a duty and desire to care for our aging loved ones, much as we observed them caring for us as children and for their elders years ago. Our own life circumstances likely dictate to what degree and in what manner we are positioned to care for a loved one. So, we each chart our own path to lend a hand in the ways that are most feasible and needed. My hope in writing this piece is to empower anyone who is or may soon be a caregiver to not let blindness stand in the way of fulfilling this important role. With the help of access technology and modern conveniences like rideshare services and grocery delivery, we now have much greater access to the tools we need to be excellent, reliable, and loving caregivers.