Tag Archive | elder care

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.

 

 

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Easter Monday Update

We made it to church for the Easter Sunday service, though Mom complained in the car that she “hurt all over” and was still so weak that I had difficulty getting her out of the car on my own. This was our first service back in the newly remodeled church sanctuary, and I was so grateful to see that they shortened one of the pews near the access ramp to make space for wheelchairs. I don’t think she could have managed transferring into a pew and back out to her chair.

It was good to be back in the church with everyone, and Mom especially enjoyed the choir… and all the people who stopped by her chair to shake her hand or give her a hug around the shoulders and wish her Happy Easter.

On Friday I picked up some urinary tract infection test strips at the drugstore and gave them to her caregivers. This morning they were finally able to get a good urine sample to test (it’s tricky with full incontinence), and the test confirmed what I’d suspected, She has a UTI. I called her primary care doctor, who called in a prescription for antibiotics, which she is starting this evening. I’m hopeful that she’ll be back to her old self again in a few days.

 

Easter 2018

Happy Easter from three generations of strong women!

 

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.

 

Difficult Conversations

“I don’t know what I’d do if I didn’t have you,” she said to me yesterday. “I think I’d just give up.” This is the second time in recent weeks that she’s used the phrase “give up.” That’s new for her. I don’t like to hear her talk like that.

Today we saw the kidney specialist and had another difficult conversation. Her kidney function is down to 13% and it’s time to talk about whether or not she will choose dialysis when the time comes. The doctor explained that she would only be a candidate for dialysis at a dialysis center, and that she would likely have to go three times a week to be hooked up to a machine for three hours each visit.  He said that it’s not painful, just uncomfortable, and that the worst side effect most of his patients have from it is fatigue, while some actually feel better and more energetic once they’re on dialysis. He went on to explain that she doesn’t need dialysis YET, but the reason he brings it up now is because she would need surgery a couple of months prior to starting dialysis, to make a fistula in her arm for the access site.

Mom shook her head firmly and said “I’ll just go home to Heaven.”

I squeezed her hand and told her she doesn’t have to decide anything now. We’re not there yet. “No,” the doctor echoed, “We’re not there yet. And there’s a lot to consider.”

Yeah. Like how in the world I would GET her to a dialysis center three times a week, for starters. I’ve already been out of work for almost seven months, and I have to go back to work as soon as possible. Once I start a new job, it will likely be quite some time before I can manage even half a day off ONCE a week.

But the bigger question is, how much would dialysis help? I’m only just starting to research this, but my initial findings on the internet tell me that there are pretty serious risks for patients over the age of 80. She’ll be 90 in in a little less than three months, and with all her other health conditions, I’m not even sure if she’s a good candidate for dialysis at all. But once it’s determined that her kidneys can’t function without dialysis, she may only live a few months.

I’m not ready for this.

I’ll close this with some good news. The two Procrit injections she received bumped her hemoglobin count up from 7.9 to 9.6, so the doctor says she’ll only need them once a month at most.

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.

Thankful

Thanksgiving was a little different this year. I’ve had to accept the fact that the days when I could have Mom come and stay with me for an entire holiday weekend are over. The seven steps into my building are impossible for her to manage now. My best friend graciously offered her ground floor apartment for our co-hosted Thanksgiving dinner this year, and I was thankful that Mom was able to join us for the meal. Mom usually enjoys our lively gatherings, but wasn’t feeling very sociable this time. She was too tired to even concentrate on working a crossword puzzle and barely stayed awake long enough to eat. I took her back to her care home before dessert had even been served, but I saved her some pumpkin pie.

I brought the pie over today, right after lunch. Mom was, again, almost too tired to eat, which worries me. As I said to her, “It’s not like you to be uninterested in PIE!” She did finally finish her small slice, then almost immediately started dozing in her recliner. I sat with her for about an hour, watching figure skating on TV and chatting a bit when she woke up long enough to remember that I was there.

They’re tapering her off the supplemental oxygen during the day, per doctor’s orders, and her saturation has been staying around 94-95. But when I checked it today, she was only at 91. I sure hope this isn’t an indicator of fluid building up in her lungs again. Thankfully, we see the pulmonologist for a follow-up chest x-ray this coming Wednesday.

Despite the changes, I am deeply thankful that Mom is still here with me and that we were able to share Thanksgiving dinner.  I don’t know what Christmas will look like yet, but the only gift I need is to be able to share it with her.

Thanksgiving 2017

 

Back in the hospital

It’s been a long 36 hours.

Thursday when I checked on Mom, her caregiver said her oxygen sats had dropped to 82 overnight and hadn’t gotten above 85 all day. They had her on 4 liters of oxygen and had done all the extra things the pulmonologist recommended, but nothing helped. I called the pulmonology office and was advised to bring her in first thing Friday morning.

She was seen by the physician’s assistant, who struck me as more cautious and thorough than the physician we saw on Monday. At first he was inclined to attribute the low saturation numbers to her anemia and poor circulation. But when I mentioned the chest x-ray done 11 days prior, he called the imaging center and got a copy. And as soon as he looked at it, he said “Take her to the hospital.” He gave me a copy of the x-ray results and his notes to give to the ER doctors, and off we went.

I think having that information helped — and it also helped that it was midday and the ER wasn’t too busy — because she was taken back while I was still parking my car. She’d told the PA that she felt “fine,” but by the time we got to the ER she was telling me she felt “yucky” and was so weak, I needed to ask for help transferring her from car to wheelchair. They did an EKG, drew blood, and gave her a chest x-ray and had her settled in one of the ER cubicles all within the first hour. A doctor came in, took some info, reviewed her labs and x-ray, and said he was going to get to work on her admission. It was the best, most efficient ER visit we’ve experienced to date.

(Side bar: One of the ER nurses who took her vitals and helped make her comfortable looked and sounded really familiar to me, but I assumed I’d just seen her on other visits to that ER… until she looked at me and said “Is your name Lira? We were in a writing class together.” Small world! And great memory – that class was three years ago.)

Mom’s one complaint was that it was too cold in the ER. Here she is tucked under her blankets.

Mom ER 2 - Oct 13 2017

There was the usual long wait for a room to open up, though, and it was five hours from arrival time until she was taken upstairs. I stayed to give her medical history and  make sure she ate a little dinner, then headed home and met my best friend for dinner, a couple glasses of wine, and some much needed decompression.

I was supposed to be at a workshop all weekend, one that I’d been looking forward to for months and that is only offered in my area once a year.  But there was no way I could leave her there without an advocate, so I sent a message to one of the teachers and explained why I wouldn’t be able to attend. I got about five hours of restless sleep, rolled over to check the time on my phone and saw a voicemail from the hospital time stamped 5:22 am. It was the night nurse, leaving me a status report before going off shift. Mom  “had an emergency” overnight, her message said, but it was all resolved. She was really struggling to breathe, so they had given her a stat chest x-ray and the doctor had ordered an extra dose of Lasix and turned the oxygen up to 5 liters. I popped a Vivarin tablet (no time for coffee), threw some clothes on, and headed to the hospital.

She was eating her breakfast when I arrived and seemed pretty chipper, all things considered. More blood was drawn for labs, and mid-morning she was taken down for a CT scan. She barely touched her lunch, so my lunch was half of her hamburger and a bottle of juice. I didn’t want to leave to get food in case they came to take her for the procedure to drain her lung, but that didn’t end up happening until around 2:30 pm.

They let me go down with her and I thought I’d just wait in the hallway as I had for the CT, but the ultrasound technician was really sweet and said I could be with her for the procedure. It’s called a thoracentesis and involves inserting a needle between the ribs into the space between the lungs and the chest wall, then draining the fluid through a thin tube. The ultrasound tech explained it, saying that they would numb the area first but warning that the numbing agent stings when it’s first injected. Then the radiologist came in and went through it with us again, complete with ennumerating the risks (the most dangerous being the possibility of the needle puncturing the lung and causing it to collapse). When he finished, he asked Mom if she had any questions. She said no and when he turned away to begin prep, she muttered to me “He already told me more than I wanted to know.” I stifled a nervous laugh.

She was sitting on the gurney, her legs over the side, leaning over one of those little bedside tables with a pillow on it. The tech had me stand on the other side of the table to be sure it didn’t move, and I held Mom’s hand. She was a real trooper, stayed still and didn’t even flinch when the needle went into her back. I closed my eyes, squeezed her hand and prayed silently. After a minute or so, the doctor got up and left the room with a quick word of instruction to the tech, who would monitor the draining fluid and remove the tube when it was complete. I don’t know if it was the relief of realizing that the hard part was over and her lung had NOT collapsed, standing stiffly with my knees locked, low blood sugar from lack of food, or all of the above — but I started feeling like I was going to faint. I tried bending my knees and closing my eyes, but when my ears began to ring I had to sit down and put my head between my knees.  (Dad, if you were watching over us today, now you know why I never had the least interest in a career in medicine…) It took perhaps five minutes for a liter jar to fill with a yellowish fluid, which was sent to the lab for tests.

They had replaced Mom’s hospital bed mattress with an air mattress while we were downstairs, which I assumed meant she would be in some pain and her back needed to be cushioned. She was very drowsy and kept dozing off, but she didn’t experience any pain for the four hours I sat with her after the procedure. When my niece arrived at 7:30 to spell me, I headed home to get a decent meal and some rest. Okay, the rest hasn’t happened yet because my cat needed attention after being alone all day and I couldn’t stand the pile of dishes in the sink for another minute… But the dishwasher is humming as I type and the bed is calling. Hopefully Mom is getting some sleep too. I’ll see her in the morning.

Mom asleep in hospital Oct 13 2017