Tag Archive | dementia

Trouble with Names

I spent a couple of hours with my mom this afternoon. When I arrived, I found her slouched down in her recliner, knees tucked up, reading a book. It’s the first time I’ve seen her even pick up a book in months. The last time I visited, I cleared a tottering pile of books and magazines off the little folding table next to her chair; taking the books back to the bookcase in her bedroom and discarding the old magazines. I’m glad now that I left her a couple of books by her chair, as it was one of those she was reading.

She asked how I’ve been, so I talked about my new job… and then I switched to sharing family news. I mentioned that Sarah is in Colorado this weekend because Ashley graduated from high school on Saturday, pulling out my phone to find an Instagram photo of Ashley in her white cap and gown with her older brother Josh. Mom looked at the photo blankly. “Who are they?” I explained that these are two of her grandchildren, and Mom shook her head. “I haven’t seen them for so long,” she said. I declined to mention that she saw Ashley just three weeks ago. With her memory, even yesterday can be long forgotten.

What took me by surprise was her reaction to Sarah’s name: “And Sarah is who, again?” She’s seen a lot of Sarah the last couple of years and always lights up when her oldest granddaughter comes to visit or joins us at church. I gently reminded her that Sarah is her oldest granddaughter, the one who goes to church with us sometimes. Mom nodded. “I’m having trouble with names lately,” she said. I squeezed her hand. That’s OK. It happens.

She’s also apparently having trouble sleeping. One of her caregivers told me that last night Mom sat up around 11:00 p.m. and rang the bell by her bedside, saying she couldn’t sleep and wanted to get up and read. So they brought her out to her recliner and she sat up and read until 6:30 this morning! Then they gave her breakfast and she finally went back to bed and slept until 11:00 a.m.  I asked Mom if she’s been having trouble sleeping and she said yes, just lately. “There was one time when I didn’t sleep for 30 hours!” she told me. “I was up all day and all night and half the next day before I finally fell asleep.”

I don’t know if the 30 hours part is true — that’s the kind of thing I would expect the owner of the care home to notify me about — but I’m going to call her primary care doctor tomorrow and see what he suggests. I’m hoping there’s something over the counter that she can take safely for occasional sleeplessness, because it will be July before I can get her in to his office.

As for the names thing… I’m just thankful she still recognizes people when she sees them in person, whether she knows their names or not.

 

 

Advertisements

She gave me a scare

I called to check on Mom this afternoon. The phone was answered by the caregiver who speaks only broken English, so instead of asking for an update, I just asked to speak to Mom. I heard her saying “It’s Lira” and then Mom mumbling “What do I do?” After a longish pause, she said hello. It sounded like she had a mouth full of marbles.

I asked her how she was doing and she mumbled something. What was that? “Tired!” she repeated, loudly. I asked if she had been sleeping and there was a long pause again, then she said no. I asked her if she wasn’t feeling well and she answered, “No, I’m not. I’ve been sick all week. Will you come and take me out of this place?” She sounded quite distressed, so I replied (as calmly as I could, considering the adrenalin that was now coursing through my veins) that I would be there in about half an hour. “Good!” she said firmly. I asked if Maria (the head caregiver) was there, and she replied “No, nobody’s here. It’s just me.” I repeated that I would be there soon and we hung up.

I had started to make myself lunch, but I put everything back in the fridge and grabbed a protein shake instead. I texted the owner of the care home, asking why no one had called to tell me that my mom is sick, and then I started gathering up what I would need for a trip to Urgent Care or the ER — Mom’s folder of health info, my phone charger, water bottle, etc. The owner texted me back to say that she had been at the facility all morning and Mom was fine, that she had been napping when I called and that’s why she seemed disoriented. It was a relief to hear that, but I headed over anyway to see for myself.

Sure enough, I arrived to find her sitting in her recliner with her favorite blanket over her legs, drinking coffee and eating a donut. I kissed her on the forehead and asked how she was feeling. “As well as can be expected at my age,” she answered cheerfully. She seemed tired but otherwise perfectly fine, and she had no memory of talking to me 20 minutes earlier.

Damn, Mom, don’t scare me like that!

 

 

Bad Days & Batty Ideas

The last couple of days haven’t been good days for Mom. Yesterday when I arrived mid-afternoon, as arranged, to take her to get her hair done, she was just starting to eat her lunch. The staff explained that she was having so much pain in her knee that she’d refused to get up from her recliner to eat or even go to the bathroom. I knew she wasn’t going to be up to the hair salon, so I just sat with her while she ate her lunch. Before I left, I leaned down behind her wheelchair and hugged her. She gripped my arms tightly and said softly, “That feels good. Comforting… Reassuring.” I kissed her forehead and told her that I love her and I’d see her tomorrow.

We did make it to the hair salon today, but it was a struggle all the way. Her legs were so weak, it took both caregivers lifting under her arms to transfer her from wheelchair to car. When we got to the salon, she and I struggled to get her out of the car. Usually she can push up with her arms and get to standing, but today she needed to be lifted. Once she had collapsed into the wheelchair, she looked up at me and said, “I’m a mess.” I shrugged that off with a smile, but I hate to hear her talk like that. It’s a strong indicator that she’s not feeling like herself.  The hairstylist helped me get her from wheelchair to shampoo chair; and to save Mom the extra strain on her legs, she let her stay in the wheelchair while she cut her hair and rolled it up on the rollers. Mom was practically nodding off in the chair, and by the time we got back to the car, she wasn’t sure if she could get up again. She was almost a dead weight, and when I managed to haul her to her feet, she just leaned her head against my chest and seemed to be having trouble turning around. She barely got her butt onto the edge of the car seat, but we made it.

I’m worried about her today, wondering if it’s the neurological issues progressing that is causing these mobility issues or if there’s a systemic issue making her so weak. Or both. Sigh. I’m hoping she’ll be up for going to church on Easter Sunday, which was the whole reason I put her through the trip to the salon.

Yesterday while Mom was in the bathroom, I was talking to Jenny, one of the other residents who also has dementia. “Do you know who came up with this batty idea?” she asked me, out of the blue. What batty idea is that, Jenny? “To cut off our arms and legs!” she replied, indignant. Yes, I agreed, that does sound like a batty idea. I wondered where it had come from, but then she continued… “I try to use my arms to push myself up, but they don’t want me to do that. They don’t want us to use our arms and legs. Your mother, too. Our arms and legs work just fine!” Well, I commented, my mom’s legs aren’t working too well right now…

I’ve been thinking about this today, wondering if the staff really are “cutting off [the use of] their arms and legs” by insisting on lifting the residents instead of letting them push themselves up and just giving them a boost as needed.  I know they’re trying to ensure  safety and avoid falls, but it’s so discouraging to see my mom losing the use of her legs. And her arms have always been strong, even when she had PT in the hospital. Use it or lose it, as they say. But I don’t know what to do about that.

 

More Like Herself

Happy to report that Mom is feeling better these last several days. We went back to church on Sunday, the first time I had taken her since her most recent hospitalization, and she enjoyed seeing all her friends from the seniors Sunday school class. I never know if she remembers them or if she just enjoys being made a fuss over whether she knows them or not. But she was all smiles, and that makes me happy.

Wednesday she had a follow-up with the pulmonologist, who pronounced her lungs “nice and clear” and says we can discontinue supplemental oxygen during the day (keeping her on 2 liters overnight), as long as they regularly monitor her oxygen level and it stays above 92.

This morning I picked her up to get blood drawn for the labs the nephrologist has ordered, and she was as energetic as I’ve seen her in months. When I asked how she was feeling, she said “Great!” And she remarked several times on how nice it was to get out of the house for a change, so after leaving Quest Labs I drove through a Starbucks for eggnog lattes and a cheese danish. We parked in the shade of a tree and sat in the car with the windows down, enjoying the pleasant breeze and each other’s company while we sipped our lattes and she ate her pastry. When I started up the car again to take her home, she thanked me for getting her outdoors and “allowing me to feel like part of the community.”

I pulled into the driveway, got her wheelchair out of the trunk and brought it around to her side of the car. She was already turned in her seat with her legs out, but when I pulled the chair up beside her, she looked at me and asked “What comes next?” I told her I would help her stand so she could get into the wheelchair. “What do I do now?” she asked. “You push yourself up,” I told her, “and I’ll help by giving you a pull.” That worked smoothly, but I was surprised that she’d needed to ask. This is how it is with dementia. She’ll be just like her old self… and then, suddenly, she’s not.

Back to (almost) normal

Mom was discharged from the SNF on Friday morning. Once I’d handed everything over to the caregivers and gone over the discharge paperwork with the owner of the board and care, I went home and collapsed for a couple hours. Yesterday I dropped by briefly in the morning when the home health nurse came to evaluate whether Mom will need skilled nursing services at home, and Mom was disappointed that I didn’t stay long. So I promised to come back for a longer visit today.

She was finishing her lunch when I arrived around 1:30. Her appetite seems to have returned, which is encouraging, and she said she was feeling good. I brought out the Scrabble game; and although she started out by saying she wasn’t sure she’d remember how to play, it came back to her quickly.  We played two games and she beat me by over 30 points both times! She seemed like her old self.

When I was putting away the game, she looked around and asked “Whose house am I at?” I told her it’s the house where she lives and she looked surprised. I pointed to the two caregivers who were working in the kitchen and asked if she recognized them, and she said yes and the house looks familiar too, “but I’ve been visiting around so much lately, I think lots of places look familiar.”

This is why traveling is hard for people with dementia. Staying in different places is disorienting and they can lose their connection with the place that is home. Today I know for sure that I made the right decision in discontinuing any travel with Mom, and I hope she’ll get to stay in her cozy board and care for a long time. I look forward to many more games of Scrabble.

Grateful

Filled with gratitude tonight. I am grateful for my aunt and uncle, who drove all the way from Ohio so my aunt could see her sister… and grateful that the timing of their visit meant I could go do an 8-hour workshop on Sunday and not be distracted by worrying about Mom. Aunt Alice took this picture of us.

Mom Sep 3 2017

I am grateful for my niece, Sarah, who has visited her grandma several times (both at the hospital and the SNF), so that I can have a break. I am thankful for the friends from church who visited her in the hospital while I was away in Oregon, and for all the family who have called or sent cards or flowers. I appreciate my friend Joy who visited today and brought a new kind of nutrition shakes for Mom to try, since it’s still a struggle to get enough calories in her. Also Joy’s visit meant I could take a couple hours off and go to my restorative yoga class, which I really needed!

I am so, so grateful that Mom is finally feeling like herself again — that she’s not only physically stronger today, but has less anxiety and improved cognition. Today was a good day. She was up in the wheelchair for much of the day; she got a shampoo, cut and style by the beautician who comes to the facility every Wednesday; and when I came back around 2:00 pm she was able to tell me everything they’d served her for lunch, and also talked about Sarah’s visit the night before. So much of the time Mom doesn’t remember that someone visited ONE HOUR before, so that she was able to recall Sarah reading to her last night from her book of daily meditations on scripture feels like a small miracle to me.

It also feels like a miracle that even though some staff member screwed up and forgot to put her back on oxygen when returning her to her room (she was without oxygen from at least 4:15 pm until a little after 7:00, when I arrived to question it), she didn’t have trouble breathing and remained cheerful and talkative… and when I asked them to check her oxygen level, it was still at 94.  I’m so glad for this sign of her returning health that I’m not even angry about what could have been a dangerous error. (Well, anger might come later. A complaint will definitely be made.)

Right now, I’m just grateful.

Every time I go away

The nurses all agree that Mom needs to spend more time out of bed. Sometimes she’s amenable to this and other times she just wants to rest and gets annoyed when the CNAs try to get her up. Yesterday I spent a couple hours with her in the morning and then went back around 2:00 pm. She had insisted on going back to bed after lunch, the CNA said, but we got her up again by tempting her with the root beer floats they were serving in the dining room.

She enjoyed the float, and I sat with her for a while, playing Words With Friends on my phone while she did her word search puzzles. Half a dozen other residents in wheelchairs were watching the movie on TV. When I needed to leave (around 3:30) to get ready for a friend’s 40th birthday party, I felt a little uneasy about leaving her there… but I knew if I took her back to her room she’d just lie down again, so I told myself she’d be fine for the hour or so before they would have brought her in there for dinner anyway.

This morning I got to the nursing center around 11:00 and she’d already been taken to the dining room for lunch. She was flipping through an old issue of People magazine when I pulled up a chair and sat next to her. She told me she “must have had a dream”: “You and I were eating in here together and then you had to leave to go somewhere, and suddenly it seemed like I was in the middle of something, that I wasn’t ME at all…” She floundered a bit to explain, concluding that it felt like she was a character in a story, and like she was watching the story unfold. I told her I often have dreams like that, and we moved on to other topics. But then she brought it up again, asking me to please make sure to take her back to her room before I leave because “I get sleepy and sometimes there’s no one around to take me back.”  A little later, when I started to get up to do something, she grabbed my arm and said “Don’t leave me!”

I don’t know if she dozed off in her wheelchair after I left her yesterday or what, but from now on I’m listening to that gut instinct that tells me something is not OK. This evening, for example. I’d spent almost 3 hours with her earlier in the day and my niece Sarah was going to visit her after she got off work, so that I could go to a planning meeting for an event I’m helping to organize. When the meeting got postponed, I thought about taking the evening off. After all, Sarah was going to be there by 7:00. But something told me I needed to at least drop by quickly to check on her.

I arrived at 6:15 pm and found her in a nearly empty dining room, working her puzzles. When I asked how she was feeling, she replied “Not good. I ate a bowl of soup and threw it right back up.” She hadn’t been able to eat anything else after that, and she said her stomach still felt queasy. I took her back to her room, stopping on the way to ask at the nurse’s station if we could get her something for nausea. “I’m so glad you came back!” Mom kept saying. Of course I came back, I said, kissing her forehead. “Well, sometimes you have meetings,” she said querulously.

Oh, and then there was the 90-minute wait for a CNA to come and change her wet diaper. I could rant about that, but I’m just tired. I feel like I have to be there almost all day every day to ensure she gets adequate care. It seems like a new problem occurs every time I go away.