It started with a voice mail from my brother: “Mom’s been in a car accident. Call Linda.”
Linda, my cousin, was my mother’s “other daughter.” The two were more like lifelong girlfriends than aunt and niece. She’d dropped everything and rushed to the hospital the minute she got the call from the Emergency Room nurse. Mom had given the nurse her phone number because she was closest in proximity and able to leave her job.
A call to Linda confirmed the worst: On the way to morning mass, Mom, 88, and her friend Danny, (85) the driver, had crashed into another vehicle at a stoplight. She had some broken bones, but otherwise was physically fine and about to be discharged from the ER. Linda would bring her home and get her settled. She’d call me later.
At the time, I was immersed in conducting a dementia workup for my stepfather, who had been exhibiting bizarre symptoms and behaviors for the last two or three years. Mom was in denial but understood something had to be done.
Just a year before, I had taken them to their attorney to draft documents: Health Care Proxies, Living Wills, Powers of Attorney, and Last Wills and Testaments. I was named Health Care Proxy and Power of Attorney for both.
When my stepfather was diagnosed with frontotemporal dementia shortly after the car accident, responsibility for both of them and their change in health status landed in my lap. I lived in New York. They lived in Massachusetts. I became a long-distance caregiver.
The Closeness and the Distance
Mom and I had always been very close, more best friends than mother and daughter. She depended on me to help raise my three younger brothers after my father unexpectedly died when I was just fifteen. She was my number one fan in everything I did, especially my writing. She remarried in 1987, and my relationship with my stepfather was contentious for a number of reasons. At the top of the list: His jealousy over Mom’s and my relationship. He sparked trouble whenever he could. I learned to ignore him.
I met my New Yorker husband in 1990 and moved 250 miles away to start our life together. Two hundred and fifty miles is not really far away, but when dealing with elder issues it can seem like a cross country trek. The route along interstates 495, 90, and 84 knew my car well as I went back to visit at least monthly and then, in the end, much more frequently. The proximity made it more likely for me to visit for the small stuff as well as the big because it was easy and inexpensive: no planes or airports involved. You can drive back and forth in a single day. It’s exhausting, but doable.
Hearing Loss Complicated Everything
Mom’s hearing loss compounded the frustration of long-distance caregiving. She had hearing aids but was 95 percent deaf, so they didn’t help much. She was a great lip reader, and we took to writing down what we wanted to say in a notebook for her to read, but that made little difference when on the phone. In the early days, we talked several times a week, but as her hearing waned and she grew frustrated, that frequency dwindled. Sometimes weeks passed without a call. I stayed in touch with those who were in and out of her house, including my brothers, Linda, and Mom’s friends. They kept me apprised of how she and stepdad were doing. Often, when we did connect, Mom did all the talking - which was great, I loved to hear what she was up to - but because she couldn’t hear me, she couldn’t answer my many questions about their health, medications, doctor visits, etc. So, I took to communicating with the doctor myself.
Mom loved her doctor. He was “so nice, and handsome. And young!” They’d both been seeing him for about 15 years. I was not as enamored. Since I couldn’t always attend doctor visits with them, I started calling him the day before an appointment to advise him of my concerns. I also wrote letters explicitly detailing the changes I noticed in stepdad’s behavior and Mom’s health. I got nowhere. When he spoke to them, they said they were “fine,” everything was “great,” they had no concerns. He did not press them.
Meanwhile, everything was falling apart, and I was getting intel from a variety of sources imploring me to “do something.” Once I took charge, I made it a point to be in town whenever they had a medical appointment and accompanied them, speaking in private with the doctors and nurses about my concerns.
Money Issues
Mom was a proud woman and managed her own affairs well into her late 80’s. She managed everything for the two of them: bills, banking, shopping, cooking. But when dementia entered their lives and the car accident left her vulnerable and frail, I took over the finances and medical while other family members living locally took over shopping and cooking and stayed with them overnight. Eventually, my cousin permanently moved in.
One of the most challenging issues I faced was applying for Medicaid because stepdad immediately needed long-term care in a dementia facility and Mom needed long-term home care. I employed an elder law attorney to redo all of the documents previously created because of their change in status, specifically his dementia diagnosis and established an irrevocable trust to protect their assets. I understood we might eventually need to use their funds to pay for in-home care for Mom and medical equipment. I managed the contracts with the homecare agencies and did the shopping for medical equipment through Amazon.
These responsibilities were not unique to our situation. Every caregiver, long-distance or not, eventually has to contend with doctors, legal and financial concerns, and decision making on what’s best for parents who need care due to illness, infirmity, or age.
Here are a few suggestions from my experience to help make these tasks easier:
Keep a journal or diary of the situation. Share it with those who matter.
Build a care team. a. Elicit help and support from family members or other interested parties. b. Find out what each person can specifically commit to and hold them to it. It doesn’t have to be a Herculean effort. A weekly visit for companionship or a trip to the market or pharmacy can be extremely helpful. c. Don’t expect everyone to pitch in. Often the caregiver must go it alone. Try not to be resentful. It doesn’t help.
Join a caregiver support group that meets regularly in person or try an online group if you can’t get out (there are many on Facebook). Venting to those who understand is therapeutic.
Reach out to others involved in your loved one’s life to check on how they’re doing.
When visiting your loved one, accompany him or her on their “rounds” - the bank, market, restaurants, etc. - and make friends with the people they interact with regularly. These people can become allies and offer a new perspective on how they’re doing. At times you will have to become a busybody. Your loved one's health and welfare are at stake. This is not a time for reticence.
Keep the lines of communication open. Text messages, emails, or a private Facebook group can help you share information with your care team.
Visit their attorney ASAP to create or update legal papers such as Power of Attorney, Health Care Proxy, their Living Will, and their final will and testament. You will need these documents to manage legal, financial, and medical issues. Don’t delay: If dementia becomes involved it will be impossible to create these documents, complicating everything.
Gather all legal and financial papers: Social Security cards; Medicare, Medicaid, and other health insurance account info; insurance documents, i.e. life, auto, home; deed to home; retirement accounts; bank account numbers, credit cards, mortgage info; monthly bills. Make copies to keep in your home. Better yet, take all papers home with you to prevent their falling into the wrong hands.
Online banking and bill paying simplify everything. Set this up ASAP.
Build a relationship with your loved one’s physician and the nurses and staff at the office. Write letters, make phone calls, or email them with your worries. Provide details. You may need your loved one’s permission to receive communication, but you do not need his or her permission to express your concerns.
If you do not have confidence in their physician find someone else, although your loved one may balk at this idea. Persist. Their health and welfare may be at risk.
Arrange for a home health assessment to determine if they are eligible for services. A reliable home health aide visiting several hours a week can be a godsend. If you have to pay out of pocket, consider it money well spent.
Online shopping is a blessing! And a great way to manage and keep track of expenses and supplies. I used Amazon, but there are plenty of other vendors out there.
Take care of yourself. See your own physician as scheduled. Take your medications. Eat well and exercise. Stay connected to friends and activities. A burned-out caregiver is of no help to anyone.
About the Author
Marianne Sciucco is a co-founder and director of AlzAuthors.com, the global community of authors writing about Alzheimer’s and dementia to light the way for others. She is a registered nurse and author of the poignant but beautiful novel Blue Hydrangeas, an Alzheimer’s love story. Marianne has also published a prequel to Blue Hydrangeas called Christmas at Blue Hydrangeas, as well as a Young Adult novel, Swim Season, based on her 11 years of experience as a Swim Mom, and three short stories: Ino’s Love, Collection, Daisy Hunter Story No. 1, and Birthday Party, Daisy Hunter Story No. 2. Her writing has appeared in Chicken Soup for the Soul: Mom Knows Best. A native Bostonian, Marianne lives in New York’s Hudson Valley with her patient, reliable husband, and Charlie, a rescued feline. When not writing, Marianne works as a campus nurse at a community college. She is currently working on another prequel to Blue Hydrangeas called A Wedding at Blue Hydrangeas. Follow Marianne on Twitter, Facebook, and her website.
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