Moving Someone with Dementia/Sweet Potato Pie Breakfast

Oh sweet potato pie. I’m mad I ever tried you.

This morning I went into a coffee shop before an early morning meeting. I had some time and wanted to get a healthy, nutritious breakfast to start my day. I go up to the counter to order and out of my mouth comes “Sweet potato pie please”. Patti. That is not nutritious. What about eating paleo, keto or vegetarian diets? I don’t know what two of those diets mean, but I feel reasonably confident that they don’t include pie. Now, if you are ever in the Germantown area of Philly, you need to order the sweet potato pie from Uncle Bobbie’s.

But here’s the deal. Recently it’s been really hard to feel like I am in any way in control of how my day will go. WAY more often I am ordering food to accommodate my son’s allergies (dairy and nuts), to appease my other son’s desire for french fries, or even to make sure that my meat loving husband has something that he would like or something that I can carry in one hand while running my lunchtime hustle errands. What I WANT is often not what I GET.

Two years ago I wrote about preparing for fall/winter holidays and what I was doing to create a Holiday Safety Plan. This holiday I was quiet over here on blog land. We moved Mom. That text is written that way on purpose. Mom didn’t participate in the move. We didn’t even tell her about it. We just MOVED her. She left her apartment in the morning and went “home” to the new place. Her caretaker took her out for the day and brought her back to the new place hours later. This is not how people move. They usually pack their things, consider what they want to bring and then make informed decisions about what sparks joy, or what is just straight up trash. We read recommendations on how to move someone with Alzheimer’s and just made a decision and went with it.

We found this guy in the cabinet while packing. Likely 40 years old? Silly appliance but I can almost smell the spritz cookies, “bally bally rolls” and cakes that came from this mixer.

But Mom can’t participate in a move. She can’t decide what to wear anymore. She can’t pick a plate to eat dinner on, or even scoop a scoop of food onto her plate. There are too many logistics to manage to make that happen. At some point we crossed a line of trying to encourage her to do those things for herself. We don’t do that anymore - we just do it for her, assuming that she can’t do it. It’s the opposite of raising my two year old. He surprises me sometimes, creeping his skills along with no announcement or proclamation. He doesn’t wake up and say “I’m going to notify you when I have to poop from now on” or “I learned how to walk up the stairs alone!”. He just does it. But Mom is the opposite. She doesn’t say “I’m not going to know who you are from now on” or “I can’t figure out how to get the food from there to my plate” or “I’m standing because I can’t send a message to my muscles to get me to sit down”. Her skills creep away in the night, stolen, stolen by this terrible disease that has taken the only parent I have left. I have one left. And none at the same time.

Ah. I made myself cry in the coffee shop. My husband says to talk about it more. But it is so difficult to put into words the depths of this. In moving her to a memory care facility, I felt like she started to die. As if we have been managing this chronic disease that might go up or down, but now she is in the memory care’s version of hospice. My brain and heart scream for a timeline- how long do we have left? What will the next five years bring? Do I need to worry at each phone call?

I hesitate sometimes to write the depths of the sadness of Alzheimer’s. But then I saw this family moving their father into the memory care unit this weekend. And across the room I made eye contact with them. They were probably two decades older than me, a different race and from their really fancy outfits and bags, in a completely different financial situation. But when we made eye contact I saw in their faces what I felt- sadness, embarrassment, guilt, relief, concern, loss and disbelief that they were in a memory care facility. Our connection was immediate and when we talked to each other it felt so natural to immediately share our deepest, usually unspoken concerns.

So I am here now, eating pie and adjusting to this next phase. And in case you are worried about someone you love with this disease I want you to know my 6-year-old is working on a cure. He already had this idea (which I can’t argue with really). “Mama, if they don’t know how to fix Grandma’s brain, why don’t they just give her all the medicines in the world and see what happens?” Love that kid.

This cracked me up. This is an email sent from my husband to Dominic’s teacher. It was the week after Mom moved and we had been spending all weekend handling the details of the move. So instead of sending my boy as a naked Curious George to school, we thought a fire truck would be easier.