Aging parents’ needs can often look different. It can be a sudden need for a typically healthy parent after suffering an injury or short-term illness. It can also be a diagnosis of a terminal and degenerative illness. Both scenarios can bring their own sets of challenges.
My mother received her dementia diagnosis seven years ago in her early 60s. She has held relatively steady until the past couple of years. She now needs help with all of her activities of daily living. Fortunately, she still lives at home with my dad, but he has his own health limitations and I have had to step in more in recent years. I have truly felt the pressure of being in the “sandwich generation” and the struggle of taking care of both kids and parents.
Dementia is a cruel disease that robs a person of their mind, aspects of their personality, and ultimately, physical abilities. It is often thought of as an “old person” disease that grandparents get in their 80s, but many adults are diagnosed as “early-onset” much sooner.
I finally convinced my dad that my mom needed more help after months of bringing my daughter along in the pack-n-play to their house so that I could give my mom a shower a few times a week. There have been countless caregiver searches, interviews, hires (and fires), to acting as payroll and schedule coordinator. From fire drills where I’ve picked up the kids to help get her out of bed and ready for the day to scheduling doctor appointments and being the health advocate for both parents. Having to remember details like last haircuts, nail trimmings, or dentist appointments, on top of your own family’s can be exhausting. It is hard to balance everyone’s needs, and at the end of the day, you also need to take care of yourself.
So many times along this journey, I have felt that we have been behind the eight ball and not prepared for the next twist in this disease’s progression. I have been asked by other moms in similar circumstances for advice on navigating the disease, especially as a mom to young kids themselves. How do we meet everyone’s needs? The answer is, I don’t think you really can meet everyone’s needs at the same time. But after some reflection, here are a few things I have learned along the way and some boundaries I have set.
Prioritize your own family and kids
This was a tough one for me for a while because I felt that there was always something my parents needed. It may be true, but I had to remember my number one job was as a mother to my children and a wife to my husband. I think my mom would have encouraged me to do that anyway and would have felt terrible if she knew I was neglecting my own family for their needs.
Plan ahead as much as possible
After a diagnosis (or early on in the disease), is important to have those hard conversations with the person about their wishes and plans for the future. Do they have a will, power of attorney, and health care directive? If not, make sure to get that lined up while they are still able. Those will be critical to help make decisions in their best interest when they are unable. Also, ask about any long-term care insurance policies they may have.
Look into care options early
My mom’s diagnosis was hard for all of us to hear, however, we didn’t do much at the time to plan for care because it was gradual and any life-altering impacts of the disease were not yet visible. It is never too early to start looking into care options. Early on in the disease, respite daycare centers are a great option for the person to have some socialization and it gives the caregiver a break. As needs increase, you may consider private in-home caretakers, at-home caregivers through agencies, and live-in memory care facilities.
Learn from mistakes
Be ready to act and fail and learn from the mistakes, rather than not act, still fail and learn too late. You will find caretakers that don’t work out. It is important to reflect on why they didn’t work out and what you can learn for the next hire. Same with physicians – if you don’t agree on a care plan or medication choice, be sure to speak up or get a second opinion. You are the health advocate.
Look after yourself
They say you can’t pour from an empty cup. Motherhood is challenging enough, but when you have an additional responsibility to care for your parents, it feels like you can’t be stretched any thinner. I have found that exercise is the best way to improve my mental health in challenging times. I will squeeze in a workout and put my phone in the other room. Allow yourself the time to decompress. Also, try to get as much sleep as possible. I know that is easier said than done, but try to put the phone away some evenings and call it an early night. It can do wonders!
If you are dealing with a parent or loved one who has been diagnosed with dementia, first off, I am so very sorry. It is a special club that no one wants to be a part of. It is hard when you envision a life with your kids and their grandparents and it doesn’t work out that way. It can be difficult not to, but try not to compare your situation to others. It has taken me a while to do that myself, but it takes a weight off when the comparison stops. In a way it inspires me more to try to live an intentional and healthy life so that I can do what I can be the most healthy version of myself for my kids.