Chapter 1218: Respite

re·​spite | \ ˈre-spət also ri-ˈspīt, British usually ˈre-ˌspīt

A short period of rest or relief from something difficult or unpleasant.

I did some of my best parenting before I had kids. Likewise, I had some great ideas about caring for a person with Alzheimer’s before my mom moved in with me. After all, I’m a social worker, and I’ve had plenty of clients with dementia. But caring for a parent is different than caring for a patient. So my pre-conceived notions about what it would be like to care for my mom ~ it’s the difference between book-knowledge and boots-on-the-ground, lived experience. In both situations I. Had. No. Idea.

Before I had my foster son, I scoffed at the idea of respite care (having another foster family care for him for a couple days, to give me a break). After all, I wasn’t getting respite from my other kids. Then he came to live with me. I loved him dearly, but he was a difficult adolescent. It didn’t take me too many months to realize that if I wanted to be a good foster mom long term, it was ok to take breaks. Better to take a break and continue parenting him, versus disrupting a placement. And then I remembered that I did utilize respite when my kids were little – it was called sending them to grammie and gramps for the weekend! In the same sense, respite is needed when caring for someone with dementia. But for some reason, I hate to admit I need it. Despite the fact that my body, my mind and my emotions are screaming for a break, it’s still hard for me to do. My mom cannot help the fact that she is exhausting to care for, which makes me feel bad wanting a break – it somehow feels like failure to me. But I desperately need one. RESPITE.

I received the above text from the home care aide this week. Sheesh…. I’m tired of getting accused of things I don’t do. The other day mom told me “Well, you threw me to the ground and stomped all over me!” What the heck mom?? And she told me “You threw your shoes at me!!” And of course there is no reasoning with her – she thinks I’ve done these things. And when I ask “when did I ever throw my shoes at you??” She replies with “I never said that!” When there are bathroom issues, she says “this is all because of the food you give me! If you gave me better food, this wouldn't happen.” She doesn’t remember getting up and sneaking candy when no one is looking. Tonight she couldn’t find her phone in her room, and of course, she accused me of taking it. (Like I would really want her old flip phone! LOL ) I tried helping her look – in every drawer, every bag, every corner. I couldn’t find it. How do you help a hoarder understand that if you put everything where it belongs, you don’t lose things as easily? The phone goes on the charger, which is on the night stand by her bed. She finally found the phone; it was in her make-up bag, where she stores everything but make-up. And I wanted to scream “See!! I didn’t take it!” But that would have been pointless. Everything is my fault and she owns none of the blame. As I’ve said before, on an intellectual level I understand that’s not her talking, it’s the disease. On an emotional level though, hearing things like that on a daily basis takes its toll. For 81 years I had the most amazing, encouraging, selfless mom. And now much of the time she is the opposite. It’s just hard for my mind to comprehend sometimes.

I’m not asking for sympathy, and I’m not feeling sorry for myself (for the most part), but here’s what this whole thing feels like to me, and I'm just being real here:

But then, here’s how I think mom is experiencing it:

“If you learn to listen to clues about how I feel, instead of what I say,

you will be able to understand me much better.” ~ Mara Botonis

The bottom line is that this experience is hard for both of us. I wish so much that mom and I could communicate better. To talk about how hard this is for each of us. The mom I know, the one whose view is being obstructed by Alzheimer’s, would never, ever say or do the things that this disease is making her do. She would be horrified to know the things she says to me. But she can’t help it. I, on the other hand, can help it. I can control my responses and manage my frustrations better. I need to do better. But right now, Alzheimer’s is kicking my butt. It’s winning. This is exhausting and I need a break. And Lian needs a break. And I am so grateful that my brother and sister-in-law are going to have mom for Christmas, and then keep her in their home for an extended period of time. We don’t fully know what that looks life, or for how long, we’re just taking it one step at a time, but again, I’m grateful for the break. I think respite is actually going to be good for me.

Tonight she was wiggling her fingers to Pat Sajak and Vanna, and I asked her what she was doing, as she usually just waves to them. “I’m showing them my new fingernail polish!” she said with excitement. Those moments make me smile. When she’s not accusing me of something, she has the innocence and delight of a child….