Lisa Marshall never expected to become her husband’s caregiver in midlife. The couple had lucrative jobs and were excited to retire early.
“We thought that we had everything going for us,” Marshall, who lives in Andover, Connecticut, tells TODAY.
But when he was diagnosed with early-onset Alzheimer’s disease at 53, she entered a world millions of Americans struggle to navigate every day — from the exhaustion and emotional toll of caregiving, to the huge impact it can take on a family’s finances.
It's also the subject of her new book, titled "Oh, Hello Alzheimer’s: A Caregiver’s Journey of Love," which covers some "taboo" topics not often discussed such as changes in sex and intimacy, transforming from the role of wife to mother and the raw emotions of watching a loved one die.
As the first anniversary of Peter's death approaches, Lisa Marshall says she has found comfort in hiking, traveling and spending time with family.
"Grief is something that you have to go through. You can’t go around it," she says.
"When you're tethered for so long to a very grief-stricken situation, it’s sometimes almost traumatic to be so free and untethered."
Almost 20% of Americans were caregivers of adults in 2020, according to a report by the National Alliance for Caregiving and the AARP. About half cared for a parent or parent-in-law, and 12% cared for a spouse or partner. Almost a quarter of caregivers found it difficult to take care of their own health and 1 in 5 reported high financial strain as a result of caregiving.
But there can also be moments of joy. Marshall, 56, shared her advice for people caring for a loved one now:
Focus on happy memories during the holidays
Caregivers can become so bogged down with the grief from the disease that it’s sometimes hard to remember who their spouse or parent was before it took hold of them.
"What helps me is to dig out those happy memories — the ones before the disease — and talk about the things that we loved about our loved ones... to laugh and talk about the Peter who I fell in love with," Marshall says.
"The more stories that I share with my family and friends from those happy times, the better I feel."
Keep holiday traditions for your loved one, but don't prod them to try to remember the concept of Thanksgiving or Christmas if they have forgotten — it’s more important to make them feel safe and happy, and meet them where they are, Marshall advises.
"(Peter) certainly understood when there was a crowd surrounding him in our home or in someone else’s home of people who loved him and supported him. Whether he knew it was Thanksgiving or Christmas, I don’t know," she says.
If you are hosting or attending a family gathering, keep in mind that a person with Alzheimer's can be very sensitive to loud noises or confusing places they don't remember. Watch for clues your loved one is uncomfortable and if they become over-stimulated, remove them from the boisterous laughter of a big get-together, Marshall advises.
Build a village of people who are willing and able to help
When her husband's health declined, Marshall, who describes herself as an “extremely independent and stubborn person,” had a hard time accepting help, so she came up with the four A’s to guide her:
Accept help when people offer it: “Throw your ego away,” she says.
Ask for help when you need it, “which is really hard because your pride gets in the way,” she notes.
Articulate exactly what you need: People want to help, but they don’t know what you need, so be specific. Ask: Can you come over and watch my loved one while I take a nap? Could you bring me a meal for the freezer? I need to go to a doctor appointment, can you sit with him? Could you take my loved one out for a little while? “What helped me the most was time in my own home by myself… some time to breathe,” she says.
“Actually”: Marshall made a habit of adding this word whenever people offered help. When someone told her, “Let me know if I can do anything,” she would force herself to reply, “Actually…” which then led her to list what she needed.
Get finances and legal matters under control
Peter Marshall retired from work after his diagnosis at 53. As Lisa Marshall became his full-time caretaker, she retired from her job, too. He had short- and-long term disability through his work and was approved for Social Security disability, but those payments still amounted to only 23% of the couple’s previous income, she said.
They were too young for Medicare and had to pay for medical expenses out of pocket.
Hiring a professional caregiver cost an average of $25 an hour with a three-hour minimum, so that meant $75 just to step out the door every time Lisa Marshall needed to leave the house and couldn’t find a family member of friend to be with her husband.
“It’s a huge problem,” she says. “There’s Medicaid, but the nuances are extremely difficult to understand and you truly need an attorney or someone who’s going to advocate for you.”
She also recommends getting an elder care attorney to prepare health care directives, power of attorney and other legal matters.
Professional caregivers can be a great help, but be careful
Marshall felt uncomfortable asking friends or family to interrupt their day to watch her husband, so it was a relief to sometimes hire a professional caregiver. But the quality of those paid helpers was lackluster, she said.
The couple went through seven different caregivers and had “some really terrible experiences,” including a caregiver who lost track of Peter, Marshall says. She installed seven cameras in her house to see where her husband was at all times.
Pay attention to your own health
Marshall recalled being in denial when her husband was first diagnosed. It took about a year for the realities to set in. “The shock of what I was dealing with, that we were handed a death sentence, it was terrible. I wanted to scream and just run,” she says.
She made sure to acknowledge her emotions: On days when she needed to sit down and cry, she did just that.
“Sometimes you’re mad, sometimes you’re angry and sometimes you’re sad. You’re always grieving because the person that you love and thought you would spend the rest of your life with is dying a little bit more each day and losing the memories that he’s made,” Marshall notes.
She knows caregivers often feel they should spend every minute of the time they have left with their loved one, "but you can’t. You must have time away so that you continue to be patient and loving and gentle and caring because otherwise you get to the end of your rope and you snap,” she says.
“You can’t be the best caregiver you can be if you don’t take care of yourself… have no regrets. Be careful of what comes out of your mouth and how you care for your loved one.”
Find moments of joy
Even as the disease progresses, you can still find little glimpses of joy, Marshall notes. Just sitting on the porch and holding the hand of the person you love can bring happiness.
When Peter began to forget their shared memories of special times together, she found delight in describing the day or event to him, watching her husband’s joy in hearing about it as if for the first time, and reliving it herself.
Life after caregiving was horrible at first, but every day has been a little bit easier, she notes.
"I feel lighter. I feel freer. I have a lot more time to do things that I want to do, and it’s easier for me to help families dealing with Alzheimer’s," Marshall says.
“I’m a different person now. I’m stronger, I’m more empowered. I have a huge passion to help other caregivers and I feel that Peter is with me and helping me.”