The Inevitable Future: Care partnering in-home to a dementia patient

For Terri Grunduski, being a care partner for her mother with dementia is a no-brainer.

“She was always very giving,” Grunduski said. “And so I think the best gift that I could give her was to take care of her in her time of need.”

But coming to accept her progression with a disease known for its detrimental effects on the mind was grueling. 

“I mean, I think when you realize the age factor, you start to dismiss a lot of the signs because she’s 70 years old. Of course, she’s not going to remember everything,” Grunduski said.

For three years, her mom’s health was declining and she had to be put on dialysis. She was forgetting things like when to pay bills, how to make it home, and to send out birthday cards.

“I mean, I think we dismissed a lot of things up to that just being in denial that it was not happening,” Grunduski said.

Grunduski saw the progression. Eventually, Grunduski and her family decided to take away her mother’s ability to drive for her safety and others.

It was the oven incident that led Grunduski to make a difficult decision.

“She left the oven on and left a Lean Cuisine in the oven—my kids will tell you— and we had to make a mad dash over there. She somehow locked it and was cleaning. And it was smoking,” Grunduski said. “And it was just a big moment where we were like, ‘That’s it, we’re done.’ She’s not going to live on her own much longer.”

Common with neurodegenerative diseases like dementia, there are moments of lucidity where everything seems fine. Care partners are forced to come to the reality that this disease has an inevitable outcome.

“You absolutely see moments of them. But you are deaf. Dementia is cruel. It’s the most cruel disease I’ve seen in my 55 years of life, because it does just that,” Grunduski said. “It shows you like this little piece of your mom or your dad or whoever. And then you realize that they only remember that in a very small instance, and the rest, they can’t remember.”

With her mom’s memory declining, Grunduski moved her mom into the basement of her home and into a dementia-friendly apartment space.

Alzheimer’s is the most common form of dementia, which accounts for 60-80% of dementia cases according to the Alzheimer’s Association. It is characterized by progressive memory loss and cognitive decline. Dementia is the umbrella term for a range of symptoms affecting cognitive ability.

Nearly 7 million Americans are living with Alzheimer’s, with over 121,000 people 65 and older affected in Indiana.  In Georgia, where Grunduski and her mom live, that number is over 188,000. Grunduski is one of 374,000 caregivers in the state.

Even though Grunduski’s mom hasn’t been formally diagnosed, with the symptoms she is displaying, Grunduski’s family is confident her mom is living with dementia.

Like Grunduski, 11.5 million Americans provide unpaid care, according to the Alzheimer’s Association. Unpaid caregiving can be an isolating experience, with the Alzheimer’s Association saying 34.1% of the care partners surveyed suffer from depression.

The difference in caregiving versus care partnering is a small but important one, said community outreach associate Amanda Oporta with the Community Dementia Network.

“When it comes to dementia, we need to now be thinking about how we partner and care with a person who may have a disease on board or an ailment on board or disability on board,” Oporta said. “So we’re partnering with them rather than giving all the care to them. Because that actually winds up making a profound difference in the way that you relate to the person you’re providing care with, rather than care to.”

Even though the decision to care for someone with a diagnosis at home is a challenging one, Oporta said the trend they are seeing in dementia care is promising.

“Because people want to age in place, they want to age at home,” Oporta said. “So many people living at home can actually do so with their partner, their spouse, their family members, their children a lot longer or maybe move back in with the children at home.”

Grunduski and her mom aren’t the only two at their home; Grunduski’s husband and two sons also live there. But she is the primary care partner.

“I would say 95% of the caregiving falls on me,” Grunduski said. “And you know, it’s very easy to stop by and drop off a hamburger or play a game of cards. But when you are the primary caregiver for a dementia patient, it is very difficult.”

The Alzheimer’s Association said 70% of caregivers say caregiving is stressful, 53% say navigating healthcare is difficult, and 35% say getting help in order to take a break is stressful.

Grunduski works from home now, but the only time she gets to work is when her mom is at her dialysis appointments. 

“You are left with zero free time because all of your free time is sucked up into what they need,” Grunduski said.

Growing up, Grunduski’s mom was her confidant, her shopping partner, her cook. It’s hard seeing her not be active like she used to be.

“It is a very different person, for sure.”

The family’s positive spirit when it comes to caregiving comes from her mom. Her mom always encouraged Grunduski and her siblings to have a positive attitude.

“She was just very engaged, you know, and she’s not anymore,” Grunduski said. “So that I do miss.”

Right now, Grunduski is focusing on the here and now.

“It’s never gonna get any better than it was today, or yesterday. And so you have to put yourself in the right mindset and say, ‘Okay, I’m just going to do the best I can. And that’s all I can do,’” Grunduski said.

But it’s not stopping her from thinking about the future. For people living with neurodegenerative diseases, the prognosis is grim. For dementia forms like Alzheimer’s, there isn’t any cure and very few medicines to help. These medicines temporarily reduce symptoms, but cannot cure the disease.

Grunduski lost her father years ago from a heart attack, and for three months he was in a coma. She said the time she and her family had to grieve helped when the inevitable came, and it’s helping now.

“And I think that this prolonged dementia has given me a chance to figure out how I’ll move on without her,” Grunduski said.

It’s a chance to accept the inevitable.

“It’s coming, and you’re having time to grieve the emotional pieces, you don’t have time to prepare the other part, either,” Grunduski said. “It’s weird because you still… I don’t know what it is, I guess human nature gives us that, that desire to find hope, in this situation. So never tell yourself this is it, this is final, I guess, until the final acts.”

Care partnering with a dementia patient isn’t easy. Even though aging at home is preferred by most, Oporta said it’s okay if that isn’t an option.

“It’s okay to forgive yourself when you just can’t do it. You need to have your team in place, and when you are ready to throw in the towel, it’s okay to forgive yourself. And I know that’s hard for people to hear. A lot of people look at it as, ‘I’m not a caregiver,’” Oporta said. “‘I’m not a care partner. I’m a family member, and this person is just my family.’ But in fact, you are doing all of that day in and day out. And it’s just very important to know that your health can be affected by that too.”

Being the primary care partner for her mom, Grunduski also struggles with 24/7 care. She’s there to help her mom with meals, clothe herself, and bathe herself. With her kids, husband, and job, being the care partner can be a challenge.

“There are days I’m like, I’m done. I can’t do it anymore. It’s too much. And then there are days where she does fine, and you have a good conversation, and you see that little light still going on in her, and you say, ‘Okay, I can do this, I want to do this for her,’” Grunduski said.

For Grunduski, being with family is what’s most important.

“it is very easy to throw in the towel and say, I’m done. She needs to go into a home. And if you actually spend time in the home, you realize… I’ve been visiting homes lately, just to see what options I have,” Grunduski said. “And you start to realize they’re not doing anything different there than you are at home and at least they have your love.“

Navigating that care isn’t easy either, especially when it’s someone you’re close to. Seeing them “slip away” is difficult. Grunduski struggles with her mom not remembering because she wants so badly to connect with her. Alzheimer’s San Diego compares asking a person with dementia to remember is like asking a blind person to see.

The more Grunduski pushes her mom to remember, the more her mom shuts up.

“So rather than me push her and make her feel bad, rather than me push her and get her upset,” Grunduski said. “I wish that I would continue to take my own advice.”

In her family, Grunduski has seen limbs amputated, cancer, heart attacks, and other people in her family gone for different things. But none of her experiences have prepared her for how cruel dementia has been.

Even though her mom cannot form that deep connection anymore, she thinks her mom would be proud of her.

“You can continue to love them through it, obviously as a caregiver, and just try to find peace in that you’re doing your best to honor them and honor their memory. I think my mom would be proud. She was a caregiver for her mom,” Grunduski said. “And I think that’s the legacy part that matters to me, and I think she’d be proud.”

For care partners or people living with dementia in Indiana, IU Health has a page of resources all over the state, which can be found here. The Alzheimer’s Association also has a page of nationwide resources for caregivers and patients, which can be found here.