Tuesday, September 25, 2012

It's getting harder to look on the bright side

I found out this weekend that my mom is on new medication for hallucinations. Apparently, she is convinced there is a man (or men) trying to harm her. I think it’s happening at night exclusively, most likely while she’s sleeping. Dad doesn’t think Mom is in any danger, but trying to convince her that she is OK just agitates her.

It’s hard not to think of Alzheimer’s as a powerful opponent, one that is winning. The normal progression of aging is already a hard reality, but Alzheimer’s seems aggressive, malicious, and systematic. It's been a year (this week) since Mom moved into the nursing home. These hallucinations are the first signs of distress we've seen. She's seemed bored and exhausted and sad in the last year, but the fear and distrust are new.

When Dad told the nursing staff how upset Mom was, they had to do an investigation, including a police interview to get a statement (she doesn’t speak in sentences anymore, so I can’t imagine it was very informative; how extra scary for her). The nursing home made changes so that she is seated with women for meals and only female caregivers work with her.

The nurses thought she might have another bladder infection. When they did some tests, they determined she is also diabetic.


I visited Mom on Saturday morning, but she was so drowsy from the meds, she was barely responsive. She had spilled breakfast all down the front of her and had over-easy egg on both hands, up to her wrists. An uneaten portion was on the floor. The nurses were busy with the louder residents, so I asked for a wash cloth and cleaned Mom's hands, rubbing the dried yolk from her knuckles and between her fingers.

I kept smiling and telling her it was good to see her, but there was no recognition in her eyes. She tried to say something, but I couldn't understand what it was. I cleaned her gently, like a baby, but she squirmed and grimaced and said “Ow!” as I rubbed the warm, soapy washcloth on her hands. I reassured her as best I could, and felt like an actress using a cheerful voice in such an UNcheerful setting. The other women at Mom’s table eyed me suspiciously and silently.

Once Mom was cleaned up, a nurse had to help her walk down the hall to the visiting room. Mom clutched a walker and the nurse put a thick canvas belt around her waist to help guide her. I tried to coax her along, “You’re doing great Mom, follow me!” But she didn’t look past the handles of the walker and kept veering slowly to her left, into the wall.

The nurse was so sweet. “Come on Vicki, you’ve got to be a strong Vicki!” and teased her about her driving skills. Not so much as a chuckle from Mom. It took all her concentration to move one foot after another. She resisted, unsure of her footing, and was visibly concerned. It felt like it took forever to get into the visiting room. The nurse sat her down in a white wicker chair with a thick cushion. I pulled another chair up close so I could face her.

I tried to show Mom pictures of her new grand baby, but she couldn’t focus on the little poster I made. Her eyes wandered past the images each time I tried to point out the faces, but she still made approving sounds, knowing how to respond when asked, “Isn’t he cute?” I took pictures of her holding baby Clive's photo, but I'm too protective to share them. She doesn't look like herself (hopefully the nurse is right, and this stupor will pass as she gets used to the medicine).

To distract us both from my awkward attempt to "introduce" Mom and Clive via photographs, I took pictures of the birds who live in the visiting room. They make sweet chattering sounds while we visit, and it's comforting. Thank you birds, for giving me something to appreciate.

I hung my hand made poster outside Mom's room.

I wonder how diabetes fits into all this confusion. Maybe her blood sugar has been affected by her prescriptions.

One of the worst things about Alzheimer's Disease is not knowing the cause. It's like a double whammy of grief and confusion. How did this happen? Were there factors leading up to Mom's diagnosis that we should have recognized, so all this could have been prevented?

There are a lot of theories I've heard, but they just feed my sense of paranoia. I worry about aluminum in deodorant. Mercury in dental work. Scratched Teflon cookware. Lack of vitamin B.

It feels like treading water on the open sea, holding on to an ice floe that keeps shrinking.


  1. Oh Em, the posts about your mom always make me cry. I am so sorry you have to deal with this.

    I have seen in my residents that UTIs can do odd stuff to them. Hopefully your mom's behavior is from that and will get better soon.

    I love you. Lots.

  2. Emily, I spent my entire Friday night on this blog. I read for hours. I've missed so much. You Johnsons are a special clan. I can't say how much your writing has touched me. I've talked with several friends about Vicki and how shocked and devastated I am. Is it awful that I say my favorite posts are about her and her illness? The eloquent rawness of your blog makes me feel like we are catching up on lost times (except I owe you some stories). Please keep the stories coming. If you find yourself in Seattle, I'd LOVE to see you.-Mel

  3. Emily, how horribly difficult this is--it sucks. Your writing conveys the pain and unfairness of it all so very well. I'm sorry you have to deal with this. Keep writing.

  4. I'm so very sorry. Many good thoughts and prayers are coming your way.

  5. Oh, Emily. If you're at Happy Hour next Saturday, I'll give you a real-time hug (if you want one). Otherwise, big virtual hugs and my sympathies. When it feels like there's nothing else you can do through this, please keep writing.

  6. Oh Emily, this is the first time I am at your blog. I feel for you - how hard is this? Many prayers coming your way.

    I read this wonderful post the other day about a man whose father had early onset Alzheimer's. His situation is different than yours, but I did really love it. Here it is. I was especially moved by his plea to not say Sorry. His exact words were: "The worst response when I tell someone my father has Alzheimer’s is “I’m sorry.”"

    Read it when you get a chance. Maybe you guys can connect as well.


    Sending you peace, love and MANY hugs.