When you first take on the role of caregiver to a person with dementia (PwD), you should immediately start thinking long-term. A key part of this planning involves reaching out to others who may be able to help you and your loved one in various ways.
In the very beginning, right after your PwD is diagnosed, their needs might not be that extensive yet. You may be able to handle the bulk of the work—keeping them safe, staying on top of doctor appointments and medications, and researching legal and care options—mostly by yourself.
However, later on you will need other people that both you and your loved one can rely on. To be honest, a team of future helpers is going to take you some effort and time to put together. The good news is that support can (and most likely will) come in the most unexpected ways and from the most unexpected places, and even the smallest gesture can have a huge impact.
There are so many skills that will be of great assistance to you and your PwD as you go on this journey, and that means so many opportunities for the people in your lives to offer their support. But first, you might have to be a bit shameless about casting a wide net for that help.
In your quest to find support for you and your loved one, here’s who to consider:
Legal professionals. If you are able, look for a certified elder law attorney (CELA) as soon as possible to handle legal matters. You will need to set up a durable power of attorney and an Advance Health Care Directive for your loved one, and it really helps to have an expert in this area. Typically, a CELA has seen everything! They’ve been doing this work for years and have specialized training in precisely how to navigate your state’s complicated rules and requirements.
Care professionals. Obviously, not everyone who wants to help will be able to provide any sort of direct care to your PwD, because that kind of interaction requires tremendous empathy and skill, especially in the later stages of any dementia-based disease. This is an area where your loved one’s doctors, care team staff, and professional health aides will likely play the largest roles. And for your own peace of mind, consider looking for a good therapist or counselor.
Family members. If possible, alert your PwD’s other family to the diagnosis, keep them routinely updated on your loved one’s condition, and invite them to pitch in as they are able, whenever and however that might be. But bear in mind that sometimes family members might disappear later on, even if they jump to help in the beginning. It’s just how these things go. They may have other family to take care of, their own health issues to deal with, or some other difficulties. So just try to roll with these changes as best you can if they happen, and appreciate any support people can offer in the near-term—such as in-person visits! Especially if your PwD is still living at home but might need some supervision, a visit is a wonderful way for other family members to contribute and allow you a brief respite. And even the occasional phone call goes a long way for your PwD.
Your PwD’s friends. Next, connect with your PwD’s closest friends (the ones they talk to or see the most often), make sure you exchange contact information, and begin a dialog with them about what’s going on. Most of these people are not going to know to just call you out of the blue, so you will have to take the lead on this. But their involvement, even just socially, will mean so much to your loved one and improve their quality of life. Later, be open to this circle expanding, even if you don’t know someone very well. Old friends, casual acquaintances, and even former colleagues may wish to spend time with your loved one, and that’s a wonderful thing.
Your own friends. You will need people in your life to talk to, and to comfort you when things get tough. The thing about Alzheimer’s and dementia is that it’s always going to be a downer for caregivers. It’s a downward spiral, with nothing good at the bottom. But connecting with people who care about you and spending a little time with them can make the experience bearable.
In the very beginning of caregiving for my sister, it wasn’t that challenging. My role was mostly about keeping Peggy occupied, and making sure she was able to get to her doctor appointments and her limited social events, like choir practice. But as her needs grew, so did mine, and I started looking outward. What stands out to me now, as I think about how all of us on “Team Peggy” came together, is that the situation was fluid for a long time, and there were some nice surprises.
For example, I hadn’t talked to Peggy’s friend Dodie since I was 10, but she had been in my sister’s life continuously since then, so I was really happy to reconnect with her as adults, and of course she became a critical part of the team. And my sister’s long-time veterinarian actually came to visit Peggy in memory care for months, which astounded me at first. Who expects their vet to make that sort of effort? I certainly didn’t! But she had taken care of Peggy’s cats for a long time; that relationship went all the way back to the 90s. It meant so much to Peggy—and to me.
I was also relieved to see different people stepping up for my sister as time went on, like her old friend Michael. Not only did he visit her often, and read to her and make her laugh, he also was able to take care of Peggy hands on, like with incontinence issues. That’s a rare gift.
Another of my sister’s oldest friends, Janelle, also played a vital role in Peggy’s well-being, especially her later months in memory care. She came back into the picture during the last six months of Peggy’s life and was strong, capable, and resourceful. I marveled at her skills, especially her ability to get my sister to eat. She became the Peggy whisperer!
Professional care staff was also involved from the start. Everyone who had Peggy’s best interests at heart thought it was important that she see someone that she knew every day, so Michael would alternate his frequent visit days with Liz and Desiree, the independent health aides I hired. Early on, they provided social interaction and supervision to Peggy while she was still living at home, but later I brought them back to supplement the memory care staff. It was so good for her!
But one of the best parts about having a team was that I didn’t have to make any decisions for Peggy entirely on my own. I always talked to Dodie, Michael, Janelle, Liz, and Desiree. I talked to my partner, other family members, and my therapist. I always figured that many heads were better than one, and I think that worked really well. Above all, knowing that there were so many people rallying for my sister (and for me) was a huge comfort, and it’s what got me through.
