When asked to describe her typical day, Lisa Marshall struggles to give an answer.
For Marshall, who is the full-time caregiver to her husband, Peter, no two days are the same.
In fact, the only thing Marshall can expect each day is the unknown of what comes next.
In 2018 at age 53, Peter was diagnosed with early-onset Alzheimer’s, a disease marked by memory issues and cognitive confusion.
While Alzheimer’s is more common in people older than 65, younger- or early-onset Alzheimer’s can happen to people in their 40s and 50s.
Just three years later, the disease’s progression has been significant enough to require around-the-clock care for 56-year-old Peter.
“The energy level is really fluctuating (and) I’ve seen a deep decline,” Marshall told TODAY Health, adding that Peter now takes two daily naps and is uninterested in tasks like making the bed.
“Watching your loved one die in front of you… It’s horrible and it’s very, very lonely.”
While Marshall is Peter’s primary caregiver, she does accept help from family and friends.
“One person cannot do this job and it took me a long time to understand that, because I am a strong independent person,” she said.
“I was almost broken by the time I admitted to myself I couldn’t do this alone. I was almost manic. I needed help and felt guilty about getting help.”
Advice for caregivers
Marshall told TODAY that a change of perspective helped her accept support.
“Change your perspective on ‘I feel guilty asking for help,’” Marshall said.
“You have to look at it (as), you’re giving them a gift. People love to help. If you can just take off your ‘I feel like I’m being a burden on you and feel guilty,’ you’re giving that person who is staying with your loved one a gift. You’re allowing them to help and gives them purpose.”
Marshall explained part of changing her perspective included letting go of a selfish mentality.
“The more people you open up your loved one to, the more people your loved one will trust and feel safe with,” she said.
“Try not to be so selfish in thinking that you’re the only person that your loved one can be around.”
In retrospect, there are two pieces of advice Marshall has for spouses of someone who has recently been diagnosed with a terminal illness.
“The first thing you need to do is get an elder care attorney and make sure that you’re protected financially,” Marshall said.
“The second thing would be to let people know about the diagnosis so they can help and you can start to create a village of people.”
How to support caregivers
Marshall admitted she wished she would have accepted help sooner.
“People want to help, they just don’t know how to help,” she said.
Marshall said the best way to support a caregiver is to offer something specific.
“If you say to me, ‘Let me know how I can help,’ I will never call you,” Marshall said.
“But if you say to me, ‘I’m going to bring you meal, do you have any allergies?’ or if someone says, ‘On Wednesday, I have a few hours free, I’d love to take Peter, what hours work best for you?’ Offering something specific to the caregiver they can’t say no to, is a good tip.”
Support group for Alzheimer’s caregivers
As Peter’s disease has progressed, Marshall has been determined to help other caregivers facing the same diagnosis feel less alone.
She began documenting their journey on a Facebook page titled, “Oh Hello Alzheimer’s”, which has grown to have more than 14,000 followers.
“You’re ultimately helping the person with Alzheimer’s, so if I can pass on any tricks or tips that can help a caregiver to be more patient, kind and understanding that benefits the person who is suffering,” Marshall said of her page.
According to the Alzheimer’s Association, it is unclear how many people in the US suffer from early-onset Alzheimer’s and the cause is unknown, though for some it may be genetic.
“It’s very sad, but we only have a brief amount of time left,” Marshall explained, adding that while she does allow herself to grieve and cry, she wants to enjoy the time she has left with her husband.
“I’m lucky if Peter’s going to be here in a year and I don’t want to waste a minute of it crying. There’s going to be plenty of time to wallow in my grief later. I want to be able to throw my hands up at the end of this with no regrets and say, ‘I gave him a beautiful life.’”