Mother’s Day 2018

We had our Mother’s Day brunch last Sunday, which was also an early birthday celebration for Mom AND a celebration of my niece Sarah’s college graduation, which had happened the evening before. My sister and younger niece (Sarah’s mom and sister) were here for the graduation, and of course they wanted to see Mom while they were in town. So we had a lovely girl’s brunch at a favorite restaurant, and it was really special. An added bonus of not doing it on an actual holiday was that the restaurant wasn’t crowded and we were able to linger over our French toast and conversation.

Family Brunch 05.08.2018

Three generations of strong women

I shared a nice, low-key Mother’s Day with Mom today. I took her to church as usual, bringing her back to the care home for lunch, and then I came back IMG_1270a couple of hours later with a bouquet of roses and a card. The owner of the care home always makes a fuss over holidays, and the dining room was festooned with “Happy Mother’s Day!” balloons. Mom’s roses joined two bouquets already in the center of the table.

Once she’d opened her card, I suggested we play Scrabble, which is always a fun way to pass an hour or two together — and it makes conversation easier. The staff helped us get set up at one end of the dining table, and we were almost finished with our first game when the owner came in, bearing an elaborately decorated chocolate cake from Porto’s bakery. Since I was there, she insisted on cutting me a generous slice, despite my protestations that I’m avoiding gluten. (Mom got most of my cake as well as her own, but she can use the extra calories these days.) We played two games; I won the first and she won the second, both with very close scores. It was a nice afternoon.

As I was leaving, I hugged Mom and told her I was glad we could spend Mother’s Day together. She replied, “Spending it with you is the whole point. You’re the one who made me a mother.” Every year when this day rolls around, I wonder if this is the last one I’ll get to spend with Mom. I’m grateful for another Mother’s Day together.

Mother's Day 2018 Selfie

Obligatory Mom’s Day selfie

 

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Field trip!

Happy to report that Mom was feeling quite chipper when I visited yesterday morning. We took a “field trip” to a local park with a large man-made lake, where she enjoyed the fresh air, the relaxing scenery, and the many varieties of birds. I pushed her wheelchair on the paved path all the way around the lake, which was good exercise for me. lol And a little challenging when we came to this rustic wooden bridge…

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… but we bumped our way across without incident, though I was grateful that her chair comes equipped with a seatbelt.

I had wanted to get a photo of Mom feeding the ducks, but she wasn’t keen on the idea… and then it turned out that the ducks weren’t keen on the grapes I’d brought to feed them either.

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Except for the mallard in the center, these are actually coots, which aren’t ducks at all.

 

There are SO many birds living around this lake! We saw two kinds of herons, a red-tailed hawk, swans, several breeds of geese and ducks, seagulls, and dozens of the coots.

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The swans were Mom’s favorites

 

Halfway around the lake, we stopped (for me) to rest and sat for a while enjoying the sunshine. The air was full of birdsong, and I counted at least seven different songs in addition to the ever present quacking and honking of the water fowl.
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Though she was ready for a nap by the time I got her home, Mom enjoyed our field trip a lot. As we move into a season of warmer (but not yet hot) weather, I’m hoping I’ll have more opportunities to take her on outings like this. It was good for us both.

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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!

 

 

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.

Medication Merry-Go-Round

Mom has had anemia for some time; both low iron and low hemoglobin counts. She’s been taking iron supplements for over a year. In mid-December, her hemoglobin count dropped to 6.7, which required an overnight stay in the hospital and transfusion of two units of blood. Even after the transfusions, they only got the count up to 8.3. (A healthy RBC count is around 10-12.) The anemia is being treated by her nephrologist because it is often caused (at least partially) by chronic kidney disease.

Recently the nephrologist prescribed injections of a drug called Procrit, which stimulate the body’s production of red blood cells. The drug is expensive and requires preauthorization for insurance coverage, which took us a few weeks to obtain. I was thrilled when we obtained the preauth, but when the specialty pharmacy called to tell me the medication was ready, I had sticker shock: 6 shots, a 3-month supply, was going to cost us over $1100 out of pocket.

I got the pharmacy to fill just two doses (at a cost of $367) for now, since we simply don’t have $1100 to splash out all at once. Mom got her first injection on Wednesday. It’s not a fast-acting drug, so we won’t know for at least 2-3 weeks what kind of difference it’s making. Also, from what the medical assistant who gave her the shot said, it’s a maintenance drug that needs to be continued; if she goes off it, her RBC count is likely to drop again. And if it drops below 7, back to the hospital for transfusions she goes.

The specialty pharmacy gave me a courtesy call yesterday, and I explained that we don’t know how we’re going to pay for this medication yet. They transferred me to a department that helps patients apply for co-pay assistance, and I was given information on three foundations that help Medicare patients with co-pays. Long story short: Hopes up, then dashed again. I’ve spent the last two hours on the phone and on websites for these three foundations, and all of them have funds available ONLY for people with specific diseases. If Mom had cancer and her anemia had been caused by chemotherapy, she would qualify for assistance. If she had any number of other specific diseases, she could qualify for assistance. But nobody seems to have funds available for a Medicare patient with anemia due to stage IV chronic kidney disease.

I’m feeling very discouraged right now.