Friday, August 05, 2011

Family matters.

On Wednesday of last week, the charge nurse at Mom’s dialysis clinic called to let us know that Mom’s feet are infected and that she needed to go to the hospital. Since she had seen her primary doctor the week prior, we knew about the infections, and we knew home health had been coming to her apartment to treat her. Apparently, that treatment wasn’t aggressive enough, so to the hospital we went.

In the hospital she started receiving IV antibiotics and wound care on her feet. The surgeon said she would probably lose a toe, but he couldn’t amputate until the infection had cleared up more. Since we’re in a holding pattern, the docs moved her across the street to a long-term facility this Monday. She could be there as long as three weeks. The antibiotics seem to be working; her feet are looking better.

Meanwhile, the bigger problem has been her dementia. After more than a week in the hospital, she still can’t seem to realize that she’s not at home, and she has little short-term memory. When we first got her in the hospital, she started asking for her stuff: her lift chair, her power wheelchair (that she doesn’t use), the pictures on the wall, etc. We kept telling her all of that was still in her apartment, and that she’s just in the hospital for now. Since she was in a semi-private room, I didn’t stay the night with her on Wednesday, her first night there. Sure enough, that night she called me to tell me she was in the hospital! I’d been with her for nine hours that day, and she had no memory of it.

I spent all day Thursday with her and left around 4 so I could work the sound booth for VBS. While I was at VBS, she called, asking if we had a good trip (I had returned from my workshop the Saturday prior) and again telling me she was in the hospital! Crazy. Then a little after 11 that night, right after I’d gone to sleep, I got a call from her nurse. Mom was yelling at the nurses, demanding they take her back to her “room” (meaning her apartment). I tried talking to her on the phone, but she was so agitated and MAD, she wouldn’t listen. So starting that night, we had to keep someone in her room 24/7. She has classic sundowners syndrome, getting hostile and hallucinating in the evenings. One night she could not stop talking about getting to her room and out of the hallway. She was IN her room, but to her it was a hallway. Every 5 minutes: “Do you have my keys? I need to get to my room!” This is your room. “So where is my bathroom?” You use this bathroom here in your hospital room. “Do you think this is funny? Are you trying to play a trick on me?” And on and on it went.

So very sad and scary. And SO not my mom.

On Saturday, Brett came up and sat with her so I could go home and shower. While he was there, the AC went out for about 30 minutes (joy), and he had to listen to a few hours of Mom’s demands: “I need my fan, my chair, my bed…” Bless his heart. I texted him, apologizing for putting him in that position, telling him I never should have left her. His reply: “For better or for worse.” His other refrain: “We’re in this together.” (Love that man!)

Then later that evening some friends from my hometown (who now live about an hour away from us) took over and watched Mom so we could take Ryan out for his birthday. After dinner I spent that night in the hospital, but then early Sunday morning the friends came back so I could go to church. While I was gone, Mom told anybody who would listen that Brett and I are making all the decisions and that nobody’s consulting her about anything. “I have a brain,” she told them.

I guess it’s good that she doesn’t realize how awful her memory is, but man, it’s terrible that she thinks we’re trying to deceive her.

While she was in the first hospital, a neurologist did an EEG and MRI on her. Mom will now be on some drugs to try to slow the progression of her dementia (still haven’t heard them use the term “Alzheimer’s”). Now that she’s at the second hospital, I’m not sitting with her anymore. She checked in there this Monday, so I’ve been home since then. They put her in a corner room at the end of a hall, right next to the nurses’ station so they can keep an eye on her.

She called several times yesterday, complaining about the nurses shadowing her as she walked the halls, and she kept asking for her lipstick and her hairbrush. (She had both when I left her Monday. When I told her she must’ve moved them out of the drawer where she put them, she said SHE didn’t move anything! I referred her to the index card I left with her Monday night. She read it aloud but then protested because the brush and lipstick were gone.) When I went to see her yesterday afternoon, she had about a 5-minute loop of discussion topics: her power chair (which she calls her “electric chair”), the pictures she wants to be sure to get off the walls, her lift chair, her bed, her clothes. She’s still not getting the whole “hospital is temporary” thing. As she talks, it’s like her mind’s floating among her old apartment, her new apartment and the hospital. She was especially worried about paying rent at two places. I tried to tell her that she wasn’t paying “rent” at the hospital, but she couldn’t keep that straight in her mind. Most of the time, she talks as if she has moved into the hospital. Other times, she talks about the great people and wonderful sugar-free desserts at “this place.” Visitors think she’s talking about the hospital, but she’s really talking about her apartment at the retirement center.

I had planned to stay four hours or so yesterday, but when she kept looping back to the same topics over and over, I couldn’t take it anymore and left after two. (Daughter of the Year, right here.) She wants to keep her purse with her, but the hospital says no. “Can you leave my some pocket money?” she asks as I’m leaving. What are you going to buy, Mom? “I have dialysis tomorrow, and you know where I like to go after dialysis.” (She goes to Sonic after every session.) A little later, she said she needed cab fare in case she needs to go somewhere. She also kept asking when we were going to go get her electric chair. “I need it here so no one will take it.” Nevermind that it’s safer locked up in her apartment; she wants it in the unlocked, completely open hospital room.

It just blows my mind that just this year she has lost so much ground that she can’t even realize where she is. As much time as she’s spent in hospitals with my dad or during her long illness in 2001-02, it’s stunning that she can’t separate hospital from home.

So that’s my long, sad story. The good news: Her feet are healing. Most of the time, she forgets how bad her memory is. Even when she’s been mad at me, she forgets that anger quickly. Brett and the kids have been fabulous, and friends have really stepped up to help us out. (One couple even brought me a Sonic drink at the hospital the other night!) Now that I’m not sleeping at the hospital, I’m starting to feel halfway human again (which is good since I go back to work in a week).

I sure do miss my mom. A woman who’s also dealing with Alzheimer’s told me that there will be plenty of time for mourning later, but really, I miss her already. I just want to be able to have a simple conversation with her, but we’ve already lost that. I can remember a time when I’d be glad to see her name pop up on caller ID, but now I dread picking up the phone.

At church the other night I was talking to a sweet lady who, like everyone else, is so concerned about Mom. She told me how much she loves my mother, and how she always appreciated her positive attitude and friendly nature. I thanked her for saying that. I told her that I’m fearful people will replace that image of my mom with this current version. I’m so scared that my mom’s true self will disappear from people’s memories. With Ryan and Katie, we talk a lot about the hundreds of things their Memaw used to do with them and for them. We talk about how much we miss her and how these recent behaviors are the disease, not the real Memaw.
During Mom's first week in the hospital, we ate our
traditional "Friday Family Night" dinner at the hospital!

Yesterday I had the best visit with Mom since she’s been hospitalized. She started by asking if I was OK, saying I looked tired. (She noticed? Wow.) Then she mentioned how much she loves the tree outside her hospital window. (“It’s my living portrait!”) Even though she continued to repeat some of her “greatest hits” (like how the room is too hot, how she needs help with her cell phone, how she wants her socks, etc.), she seemed to understand that she was in a temporary setting and not at home. And then she said something that was classic Mom:

“I can’t do much while I’m in this bed, but I can pray for you. I pray that you and Brett and the kids will be healthy, and I also pray that you’ll have the energy to do all that you have to do.”

In that moment, I could really SEE my mama. Even though she’s stuck in a hospital, even though she’s continually confused, even though she lashes out at us in her frustration, she’s still my mother who loves me more than anything.

The day is coming when she may not even know who I am, so these Mom moments? Gold.

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