Primary Family Caregivers vs. Their Family
Family members can sometimes disagree on the care plan for a loved one living with dementia. At times, these disagreements can lead to rifts in the family. These rifts may never be healed, even after the person living with dementia passes on. We talked to family caregivers about their experiences and the nature of their conflicts with their siblings. Experts say that many times these arguments can be resolved through open communication. There are online tools that facilitate this communication and coordination of care. We report on one of them that was specifically created with family caregivers in mind.
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A Virtual Helping Hand for Family Caregivers
“Receiving that diagnosis is traumatic,” Debbie Thomas, senior care manager at SAGE Care Advisors, said.
Thomas knows how a dementia diagnosis alters a family’s reality. In her role as a care manager for seven years, she has observed how tensions can rise when families consider next steps. Thomas frequently advises her clients to keep communicating openly with other family members and remain present. She acknowledges, though, that the lack of tangible resources for emotional support is exhausting.
Family members of a loved one with dementia experience a wide range of emotions - even after their caregiving tasks have come to an end. Past conflicts and power dynamics can resurface between siblings, which leads to misinformation and feelings of isolation, taking the attention away from the loved one living with dementia. According to the Alzheimer's Association, over 15 million family caregivers of loved ones living with dementia work significantly more hours than non dementia caregivers. They have reported a greater overall strain on their family relationships, mental health and physical health.
“It’s very, very hard to watch,” Lisa Smrek, a registered nurse and care manager, said. Smrek was also a caregiver for her mother living with dementia, until her mother’s death a year and a half ago.
“It does affect the family dynamic,” Smrek said. “You're in a struggle a lot of the time because you're trying to maintain the normalcy of life in those moments. But then you have a sibling saying, ‘Oh, did Mom do this? Mom didn't take her pills?’ Then, you have another sibling saying, ‘Yes, she took them when I was there.’ ‘Well, maybe they weren't the right pills.’ And then you have this little bit of conflict, so you're…trying to figure out what the right thing to do is, and there isn't really a right thing. There's just what you feel at the moment that is the best thing to do.”
In her roles as a professional dementia caregiver and family caregiver, Smrek has noticed many patterns with family dynamics over the years. There is often at least one family member who resorts to denial.
“You're hitting a brick wall, whereas the other people are still processing it, and they're more teary eyed and not accepting it, but not being mature about it either,” she said. “So I guess that's kind of two different patterns of denial and melancholy.”
There are, however, tools available to help primary family caregivers like Smrek communicate more effectively with other members of the family, as well as coordinate their schedules and offer emotional support to one another. These resources make a transparent flow of information accessible to all people involved.
Lotsa Helping Hands is one of these resources. It is a free website for caregiving families to organize information and communicate their feelings throughout their caregiving journey.
“Lotsa exists to provide relief for caregivers to help support them in their caring,” Matt McCabe, managing director of Lotsa Helping Hands, said. Lotsa does this by providing an online platform that connects individuals and involves them in the caring process. “Friends, family, neighbors, church group folks or synagogue, whatever group of folks who want to raise their hands and do what they can to help out,” he said.
Individuals are able to join Lotsa Helping Hands by signing up for an account, which creates a “community.” Members can then add a parent, siblings or any other relative to their community. The website also allows friends to join for emotional support, and volunteers can request to join a community near them to help people locally.
According to McCabe, “Most of the tasks that people get help with are known as IADLs. They're the instrumental activities of daily living, and those are things like brushing your teeth, showering, going to the bathroom, cooking meals, going to the store, getting to your medical appointments, and cleaning up around the house. And actually a huge one is just visitation, someone being there. Being there does two things - combats loneliness for the patient [and] provides respite for the caregiver. Someone who will come and be there for four hours, so the caregiver can take care of things. They need self care - just relief in one way or another.”
Since Lotsa launched in 2005, there have been over 100,000 caregiving communities created. However, it should be noted that the website is not specifically designed for those caregiving for a loved one living with dementia. It was created for a wide range of caregivers. Also, the site is not designed to heal family conflict. It was created to proactively strengthen family relationships before there are disagreements about caregiving decisions.
“The coordination of care is really a pain. You get a diagnosis and it’s like, ‘Oh my gosh, we've got to help. This has just gotten real.’ When that happens, usually a person is going to be the primary caregiver. It's not usually an election. It's the person who just steps up and is there. It tends to occur naturally,” McCabe said.
Thomas feels resources like Lotsa are essential for facilitating open communication. She said, it is important to make sure “that if somebody has a conversation with a physician or a specialist that they then immediately bring everyone in the family into the loop, so that there isn’t a feeling by anyone in the family that someone is making decisions or has information that they’re not sharing.
“I would say that my number one recommendation is open communication,” Thomas said.
McCabe describes Lotsa as a tool that is very intentional about facilitating open communication, knowing that disagreements can occur without it. “There is some disagreement about what mom or dad needs, right? We breakdown all the different tasks - meals is number one, visitation is number two, rides is number three. These tasks sit above a lot of the others. Getting people to appointments. Combatting loneliness, especially among seniors. Preventing isolation and depression. Those are the things that are really at the core of why Lotsa exists,” McCabe said. “It was born out of caregivers. It was born out of helping caregivers.”
Lotsa Helping Hands’ online community offers a variety of features. Care calendars are critical tools that help assign responsibility to family members equally. Each member signs up for tasks like delivering meals to their loved one’s home, or providing rides to their doctors’ appointments. This resource can be used alongside a paid caregiver that a family brings in to care for their loved one living with dementia.
While caregiving, Smrek and her siblings would put together weekly plans to figure out who would visit and bring meals to their mother on what days.
“So because of safety issues - keeping the stove on, watching the oven, you know, getting to the supermarket - who was going to do that? I would make a schedule for all these things,” Smrek said. “I used to call it a schedule, and I used to put a schedule together for who was doing laundry, and I would send it out to my siblings for what to do.”
Smrek says that a website like Lotsa Helping Hands would have been very helpful in taking some of the stress away from creating these schedules.
“Well, I wish I would have had this,” she said. “This would have saved me a lot of emails and texting and phone calls. So, I think this is an excellent idea, because I used to have everyone calling me and emailing me even though they had it in writing. Well, I'm managing a full household, a full-time job and mom and dad's agenda, and you're asking me times. So, I would just say go to the website and look at the times. So, this would have been wonderful for really keeping a family organized.”
Social media forums are also available on the Lotsa Helping Hands website for emotional support. Non-caregivers are able to create an account and leave a post in a community’s forum. McCabe says the photos and videos serve as “a well wishes function. That's just encouragement, right? Thinking of you, praying for you, Olivia. Oh, here's a fun video of Johnny's basketball game.”
Family members are able to post announcements in their own private forums. Transparent updates can be shared through these online posts. Siblings can communicate information from their loved one’s doctors’ appointments, as well as any feelings they are currently experiencing themselves or any tasks they need help carrying out.
The online photo gallery feature creates a virtual memory book. The laughter and happiness families have while caregiving is captured through uploading pictures to the gallery tool. This allows families to catalog the good moments they experienced with their loved one. Siblings can look back at these memory books and see their collective sense of joy and compassion while they took care of the person they loved.
There are currently 125,000 active monthly users, according to the Lotsa Helping Hands website. The company’s records show there have been 822,000 childcare shifts covered, 2.1 million meals delivered, 580,000 rides given to appointments and 250,000 well wishes posted on social media since it began.
“We have done a lot of research among users, both quantitative and qualitative.” McCabe said.
“Where [Lotsa] often helps the most is especially with siblings, who might be living out of state or out of the city, and who might have very strong opinions," he said. "Those opinions often come from them feeling disconnected. This allows them to feel a little more connected, and it also allows them to have some ownership. Let's say, okay, I can help think through how to coordinate out of state help, get a meal delivered. Things you can do without being in close physical proximity.”
There are plenty of other online scheduling tools available for families to receive help coordinating these tasks. The limitation with these services is very often the cost. This is where Lotsa shows its commitment to the emotional well-being of families. The site has established partnerships with approximately 50 national healthcare organizations that invest by paying a fee to display a direct link to Lotsa’s website on their own homepages. This exchange is called co-branding, and it is how Lotsa makes its profit, allowing caregivers to create communities without paying a single cent.
Smrek believes this tool can really be a comforting solution, not for eliminating grief, but for keeping families together while learning how to live with it.
“Just be patient, you know, it's so hard,” Smrek said. “But when you find that you're not able to be patient anymore, then you need to really somehow step back, and maybe pull in another person - either a friend or a family member, or a paid caregiver, or sometimes there are some volunteers out there through people's churches.”
The intangibles offered by Lotsa Helping Hands prevent family relationships from succumbing to the common fractures caused by grief. It is a short-term tool that focuses on good communication and teamwork, which has the potential to build families up instead of tearing them down.
“I will definitely recommend [the site] to any more future patients I have and families, because there's a lot of people out there that have this situation going on,” Smrek said.
One hand at a time, Lotsa is helping individuals acknowledge that their strain is significant but more manageable when it can be shared in a community. It creates a foundation for families built on something that can last forever - love and support.
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Conflicts in the Family That Can Arise with a Diagnosis
In some situations when a person is diagnosed with dementia and a power of attorney is not in place, the family must come together to help the newly-diagnosed person prepare for the future. Often, this preparation is easier said than done as family members can clash over care decisions. The tension that ensues can especially affect the primary family caregiver. In this audio story we hear from Keira Sheffield and Debbie Thomas, two healthcare advisors, who talk about the kind of problems a family can experience when a loved one receives the diagnosis and how they can potentially resolve their problems.
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