Oliver: Knowledge is power when it comes to finding resources for caregivers

I have been a family caregiver since October 2014, when my elderly mother came to live with my husband, Tony, and me.

November is National Family Caregivers Month, and I’m sharing my story to put a face to one of the many examples of family members who care for their loved ones.

We moved my mother from her home in Georgia to Illinois so that we could take care of her. She had been having trouble with driving and taking care of herself, and her friends alerted me. My mother, as it is with many older ones who fear losing their independence, was very good at masking the extent of her need for help.

At first, my mother was fairly independent and valued having time alone. Tony and I would be able to go places and run errands without incident.

Slowly, though, my mother’s dementia started to worsen and that no longer was possible.

Meanwhile, my dear Tony was starting to have his own memory issues, so much so that we had to get him tested. He was diagnosed with early onset Alzheimer’s disease in August 2015.

Thankfully, Tony’s dementia was at its earliest stages while my mother’s dementia progressed. That meant that I had some help in dealing with the many challenges that my mother’s dementia presented.

I learned a lot in those years with my mother, gaining valuable insights into dementia and its stages, as well as what works and what doesn’t in trying to communicate.

My mother was with us until her death in April 2018, just days after we got her into hospice. Although I didn’t expect her to leave us so quickly, I was grateful that the program was in place.

One of the hardest things about caring for loved ones with dementia is the struggle to find resources and information to cope with the situation.

When my mother came to live with us, I had no idea what I was doing. I often consulted the Alzheimer’s Association website at www.alz.org for basic information.

When Tony was diagnosed, I was able to sit down with a consultant from the association. However, at that stage, it was all new and overwhelming. Most of the information we wouldn’t need until years later. Still, it was a relief at that point to get any information.

In recent years, as Tony’s dementia has worsened, I’ve been able to find more programs and help.

I connected with a caregiver support group through Senior Services Associates here in McHenry. I’m grateful that I can attend meetings online, since it’s hard to take Tony places these days.

The one thing I’ve always wanted was to have a care navigator for Alzheimer’s disease that works like the nurse navigator that I had when I was battling my own breast cancer.

I was delighted when the federal government announced the GUIDE program, which provides just that. The Alzheimer’s Association has partnered with Rippl to provide those services here in Illinois. I signed us up almost immediately after learning about it.

Another resource I’ve recently been made aware of is a new online directory of dementia support programs called Best Programs for Caregiving.

The free database contains information on services provided in person and virtually for caregivers in their communities. What’s more, the programs it lists are evidence-based and among the best available. The site doesn’t claim to be comprehensive, but it does have programs that have been shown to work.

At bpc.caregiver.org, users put in their ZIP code and are provided a list of programs that address issues such as coping with stress and strain as a caregiver; managing symptoms of dementia to gain confidence in caregiving; and finding and coordinating needed services and other types of support.

This is an extension of a database launched in 2020 for professionals and service providers, and the programs there now have been made available to family caregivers like me.

A link on the website provides “additional resources” and takes a caregiver to the Family Caregiver Alliance site (www.caregiver.org), where one can find even more Illinois specific information.

Caregiving is a challenging job, but knowing where to turn for good information and resources really is a game changer.

• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.