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The Four Most Asked Questions by Family Caregivers

by Robyn Berry, LSMW, Resource Specialist, Family Caregiver Support Program with SMAA

Shortage of home care and long-term care communities is a known problem for the aging population in Maine. While the COVID-19 pandemic brought unique challenges for both services because of the “staying in place” restrictions, things are coming back to normal and the need for home care and long-term care is increasing again.

We spoke with Robyn Berry, Family Caregiver Resource Specialist at the Southern Maine Agency on Aging, about the most common questions that she gets from care partners*, and the resources and help we at the Agency can provide to them.

1. Finding Home Care for Respite Care

There are two types of home care – state funded home care programs and private pay. The private pay is not cheap – it is $25 to $35/ hour, sometimes with three or four hours minimum. For people who cannot afford to pay privately, the State of Maine has Home Care programs but they may have long waiting lists. When care partners call SMAA’s Resource Specialist and ask what do I do in the meantime? we refer them to our Caregiver Respite program if their person has a diagnosis of dementia, or problem solve with care partners about possible informal supports that could help.

When a family care partner calls or emails Robyn with a question about home care, the first thing she does is to share our How do I get home care services in Southern Maine document, which is a step-by-step guide for determining if a care partner and/or care recipient qualifies for the State-supported home care or not. The major criteria, says Robyn, is what do they need help with and how much a person has in liquid assets: for an individual it is fifty thousand or less and for a couple – seventy-five thousand or less. A person’s home is not counted as a liquid asset in this instance.

It is often easier when people can pay privately because it cuts through all of the paperwork and waiting lists of the state-funded programs, but care partners may still run into a lack of staffing. Family Caregiver Resource Specialists are always available to walk care partners through the process of accessing services and looking for the support that they need. For care partners who are able to pay privately, Robyn clarifies that we email them a list of potential home-care providers. Those lists are also on our website and include Cumberland and York counties for both home care with medical needs and no- medical needs. Once they review the list, they can always contact us for more help.

2. Finding a Long-term Care Community

The next big topic is placement in a long-term care community. There are waiting lists everywhere, especially for those who need help from Long-term Care Maine Care. Many facilities have lengthy waiting lists for Maine Care openings. There may be a little bit of a wait for a private pay opening, but it may not be as long.

The decision of when to place the person needing care is a major aspect of finding the right long-term care community. It is understandable that care partners hold off as long as they can to keep the person at home, but often the care partners reach out to the Family Caregiver Resource Specialists when they have reached a crisis point. Being able to plan as early as possible means that a care partner has one less thing to stress out about in the long run. Early planning also allows for more options to consider, rather than just going by space availability, which may not be the right fit for the person or a place that the care partner or the person they care for would have chosen.

3. Having a Plan B

Robyn says, “I always tell people even if you're not thinking about it today put it on your calendar to think about it next month because you never know what is going to happen to either the care partner themselves or the person they care for.” In an ideal situation, everyone should start planning (for themselves and/or their care partner), and looking at what is available to help them. Research shows that the sooner a care partner has help and support, the longer they will be able to care for that person at home if that is the goal. For care partners and people who have been diagnosed with a dementia, we have a document called What to Do When the Diagnosis Is Dementia. In the end, seeking help and support depends on the preparedness of the care partner and the care recipient to discuss long-term plans.

To emphasize the need for care partners to have a Plan B/Back-up plan, Robyn gives an example of a situation when the care partner needs to call 911 for themselves. They need to notify the EMS that the person they care for has needs as well, especially if they have dementia. Having a back-up plan means they will have an easily accessible contact - a neighbor or friend - that can come and stay.

4. Care Partner-centered Approach to Providing Resources

Most commonly, says Robyn, people call and leave their contact information for us to call them back. Their voicemails can tell us about the type of help they need. Some people want to talk the situation through with a Resource Specialist. Others just want resource information and then they will follow through on their own. For those who ask for the information but do not want to talk to a Family Caregiver Resource Specialist, Robyn says that she always includes extra information in the email because “down the road even if they didn't need all that information, they may think “Oh wait a minute, she said there was something else” and if they can't find the email then they'll call or email us back.”

*An article from Stanford University explains the difference between a care partner and a caregiver:

“The difference is that of a one- versus a two-way street:

A caregiver is someone who provides care for someone who is unable to care for themselves. The term implies a one-way relationship between two people–one gives and the other receives. It suggests that a passive role is taken by the recipient of care.

However, caring is often a two-way street, and this balance of care is more fully captured by the term, care partner. A partnership is characterized by mutual cooperation and joint responsibilities. There are opportunities to give as well as receive by both parties in a care partnership. The term is more inclusive and egalitarian.”

In addition to the two-way relationship between a caregiver and the person they care, the term care partner also allows to include other paid and unpaid caregivers as well as support of organizations such as SMAA that offer trainings, support groups, and resources for both caregivers and the older adults or adults with disabilities they care for.

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Explore other Family Caregiver Resources to learn more about your option

If you are a caregiver and are feeling overwhelmed, please, consider contacting the Southern Maine Agency on Aging (SMAA) at 207- 396-6541 or email at to connect with a Family Caregiver Support Specialist. In addition to Options Counseling, SMAA also offers respite funding to eligible individuals, Adult Day Services at the Sam L. Cohen Center in Biddeford, Savvy Caregiver classes and support groups.