Dear Mom: Grieving Alzheimer’s and the Weight of Caregiver Guilt

Solitary rock in the water

Dear Mom,

The last two months have involved a lot of preparation, grief, and processing.

It is most obvious to myself, James, and Jackie, when I’m struggling with something because I have a hard time getting up in the morning. The alarm goes off; I roll over and turn it off. Everyone else in the house wakes up- James, Jackie, Sammy, Violet, Ginger- and I continue to sleep. Finally, about an hour later, I get out of bed, not exactly more well rested. Mostly, I’m filled with guilt that I didn’t wake up with my alarm. I then, inevitably, “shoulda/coulda/woulda” all over myself, which makes me feel worse.

I texted Julie about it and how I have felt like I am walking through mud. She clarified it perfectly: it is like carrying a large rock in your pocket. The rock is heavy; it impacts your ability to move. As time passes and you start to get stronger, the rock feels less heavy to carry. At this moment in my present journey, some days I feel like I am stronger than the rock, and other days I feel like the rock is stronger than me.

The Decision to Transition to Memory Care

I was able to take care of you for about eight months before I started to experience caregiver burnout. The elder law attorney and elder care expert gave us recommendations for memory care communities. We toured them, asked questions, and calculated budgets. In late May, we made the tough but relieving decision to move you.

I have started attending a caregiver support group, and everyone there has lasted much longer as a primary caregiver. I am not sure how to overcome the caregiver guilt of not being able to take care of you at home for very long. I don’t know when I will get over that.

Navigating the Reality of Dementia and Memory Loss

It’s been over a month since you moved to the memory care facility. I still hope you are ok and happy. I try to visit one to two times a week. At the beginning, you were very out of it; more recently, you seemed to have been improving. Although today, you had packed up a large amount of your things and told me that you were moving soon, that you had been there long enough. You were planning to move somewhere where you would live, but no one had to take care of you.

At times Jackie has been hesitant to visit, and I think that the visits aren’t always easy for me either. I am still burned out from caregiving, so I typically only stay a few hours.

Grieving the Person You Used to Be

I see pictures on my phone of you and the person you used to be. I pause in front of your room here in New Jersey or Maryland and I think the “old you” should be here, filling these spaces with your love, your laughter, your focus/attention only on the present moment and the people that surround you. All my friends growing up would come over just to get advice from you. Even now, we all have this void of the sage wisdom you gave out.

I have a breast biopsy on Monday, my third in three years, and the only person I want to discuss that with is you. But I can’t because the Alzheimer’s disease prevents you from providing that wisdom, from engaging in the conversation, from remembering. I really miss you!

I was so lucky to have you as my Mom for as long as I did, as my best friend. Which is why I feel so compelled to be there for you now, even though navigating Alzheimer’s is hard, and even though you won’t remember. You were there for so many people in your life, especially when it was hard; I owe you that much in return. It feels like you got James, Jackie, and me through my stroke, and then Alzheimer’s took over. Now I need to get you through this for the rest of your life.

It is incredibly hard to be present with the new version of you when I am actively grieving the old you (a living parent) and worrying about the future and level of care you will need in the years to come. So, this is why I am struggling to get up in the morning. I’m still processing, and I’m still grieving.

I still love you, even the new version of you, and I will always be there for you as you were for me.

Love,

Suzanne

P.S. To anyone out there caregiving or experiencing caregiver burnout: I see you! No matter what, you are doing a good job! You are enough, and you are doing enough!