How do I prepare myself to handle my mother’s dementia?

Dear Grace,

My mom is in her first stages of dementia. I’m honestly still in shock from her diagnosis. How do I get help for her (and me)? How do I care for her while I am already grieving for what I know she will go through?

– Way Over My Head, Washington

Dear Way Over My Head,

Allow me to first offer my most heartfelt condolences for what you are going through. There is no easy way to lose a parent, but dementia may be among the cruelest. I am so proud of you for recognizing that you need support through this next chapter, just as your mother does. Both as a daughter and caregiver, there is so much on your plate: your grief, her daily care, managing appointments, keeping siblings and family in the loop about her condition, preparing meals, keeping up with the space, and of course, caring for yourself so that you’re not pouring from an empty cup.

Here are some suggestions that I hope will give you both the help you’ll need, and make the most of your time together, too.

Get support. As you’ve already mentioned, having a source of support and comfort for yourself is key. Watching our parents age is a natural part of life (and a privilege) that we all go through, and your friends can probably relate to some of what you’re going through. Reach out to those friends or find a support group in your area (or online if going in person is a challenge). You’re going to need a good listening ear and advice as you take on each day with your mom. If you don’t know where to start, consider checking out the resources that the Alzheimer’s Association has for caregivers.

Have fun with your mom. Dementia is an unpredictable illness, but since your mom is in the early stages, make sure to take advantage of her good days. Having fun together is a great way for both of you to get your minds off your grief and anxiety and remember to cherish the time you have together. There are plenty of ways you can have fun together and as her main caregiver, you’ll have a good idea of what kinds of outings will work well for her. On days when it’s best to stay home, you can revisit favorite movies or recipes together, play games, or do a puzzle. Brain games like these are another good way to get her engaged and keep her brain active. 

Give yourself time to feel. You know this already, but things are going to get harder as your mom’s dementia progresses—both in your role as her caregiver and her daughter. You may feel it’s your duty to put her first all of the time, but let me remind you: that is physically impossible. In order to care for her, you need to care for yourself. That means giving yourself time to go for a walk, take a long shower, or call a friend to decompress. Ask a friend or sibling to sit with your Mom for an hour while you do something for yourself, or if no one locally is available, find a local caregiver that you could call up when you need some help or a break. You might feel a little guilty taking time for yourself every now and then (and you’re not alone), but know that you are doing what’s best for both of you. 

There is no question that dementia is a cruel and frightening disease, and my heart is with you and your mother. She is lucky to have you standing by her, offering your steadfast love and support. I truly hope you are both able to appreciate the beautiful moments you have together, and find strength for the road ahead.

With love and tremendous compassion,

Grace