Tag Archive | elder care

Thirty-Six Hours in a SNF

Wednesday morning I learned they would be discharging my mom from the hospital to a skilled nursing facility (SNF) later that day for “a few days” of rehab. I had already made the decision to cancel my trip to San Antonio, so I asked the discharge planner to look for facilities near my office location rather than have her sent to the same horrible place she went the last two times just because it’s close to home (and the owner of the board & care would visit her there). The discharge planner sent me three possibilities to research. I ruled one of them out based on their ratings and reviews, but both of the other two looked like they would (at least) be better than the last place. The decision was made for me when only one of those two had a bed for a female available. I felt pretty good about it. The facility is on my way home from work, only a couple minutes off the freeway, and while reviews are mixed, it gets solid ratings from Medicare and other agencies.

The transport that was ordered for 5:00 p.m. didn’t arrive at the hospital until 6:30, so Mom was able to eat a little bit of dinner first. She was in pretty good spirits and definitely seemed to be improving. I hoped that it really would be just for a few days. Maybe she’d be back at the board and care by Monday, even. As I was standing around while the medical transport guys were getting ready to load her on the gurney, one of my favorite CNAs came in to say goodbye to Mom. She reminded me of a friend of mine in Portland (if that friend had candy red hair) and she’d been really great with Mom. The stress must have been written all over my face because she took one look at me, said, “Oh honey” and put her arms around me.  And maybe it was because she reminds me of my friend that I didn’t hesitate to let her hug me. It felt so good to be seen, to be held.

We got to the “4 star” facility around 7:15 p.m. It looks pretty much like the other nursing home (they must all be built on the same basic floor plan), but it’s a bit older or hasn’t been upgraded as recently. Instead of individual TVs for each bed, there are two TVs mounted on the far wall for the room of three. Mom didn’t get a TV (or a remote for the one she can see from her bed), but at least she got the bed by the window. The medical transport guys got her into bed and comfortably propped up on pillows, someone brought an oxygen machine and they got her switched to that from their portable tank, and then they left… and we waited. And waited. No one came in to assess her or have me fill out any paperwork. After an hour, I went to the nearest nursing station to ask. The harried charge nurse gave me the paperwork and tried to tell me that both the flu and pneumonia vaccines are needed every year and Mom should get them while she’s there. Wrong. The pneumonia vaccine is good for five years. Mom got it last fall and, even if she hadn’t, a nurse friend confirmed to me via text that it’s medically inadvisable to give the vaccine while she’s recovering from pneumonia. Good grief.

It took TWO HOURS for the nurses to even come into her room to assess her, and I’m convinced it would have been longer if I hadn’t made it quite clear to the charge nurse that I wasn’t going anywhere until that got done. And, of course, when they did the body check, she was soiled. To put it more bluntly, she’d been lying in her own shit for who knows how long until they finally got around to her. I was NOT happy. And even less happy when I learned that they wouldn’t have any of her medications except the antibiotics until morning because their pharmacy doesn’t deliver after a certain hour.  There wasn’t anything I could do about it, and she was finally clean and ready to get some sleep, so at 10:00 p.m. I finally went home, feeling like this was going to be a disaster.

I had told my boss that I’d be in late, after I stopped by the SNF to do the admissions paperwork and check on Mom, but I slept so poorly and was so worried about the situation that I knew I just needed to call off for the day. I got over there about 9:00 a.m. and it was a much more cheerful place in the morning. The day shift charge nurse was much more responsive, they now had all her meds, and the dietician came around to talk about her dietary needs and preferences. The one thing I was still concerned about was that they didn’t seem to have the orders for IV fluids, which I’d been told was the main reason they couldn’t discharge her home to her board and care. I was told that the nurse practitioner would be in later that morning and would take care of it.

The nurse practitioner is awesome, and talking with her restored some of my confidence in the placement. She listened to my concerns and we seemed to be on the same page about what is and is not acceptable in terms of care. She confirmed the IV order with the hospital PA and got that started within an hour of examining Mom. The x-ray and blood draw for labs she ordered also happened that same day. Two physical therapists came to do a preliminary assessment on Mom, and they got her up in a wheelchair and wheeling herself around (which she’s never done before because the chair we have is a transfer chair). She seemed to enjoy doing that and it’s good exercise for her arms, so I resolved to find a way to get her a regular wheelchair when she gets home.

After spending most of the day with her, I left around 7:00 p.m. to get some dinner and rest. “Go,” said Mom with a smile. “Take care of yourself. You need to have a life too.”

The hospital had scheduled a follow-up with the nephrologist for Friday, but the NP and I both agreed that she wasn’t quite ready to be taken out to an office visit, so I got it moved to Monday afternoon. A case manager from Mom’s medical group called me to arrange the wheelchair van to take her to the appointment, which was something else the nurse practitioner had told me she would make happen. (Clearly this woman gets shit done. I respect that.)

I went back to work on Friday without worrying about Mom, though I was frustrated to realize that I couldn’t call her. There are no phones in the rooms and they don’t even bring a cordless phone in for patients who are on bedrest. The only way for a patient to get a phone call is to have their own cell phone — which, frankly, I would worry about getting lost or stolen, even if Mom had one — or go to the nursing station to take a call there. Ridiculous, if you ask me.

But when I got to Mom’s room around 4:30 p.m., she was a lot less perky than the day before. In fact, she was so weary that she could hardly keep her eyes open. “I may fall asleep on you,” she told me. “The only time I feel comfortable enough to sleep is when you’re here.” I held her hand until she fell asleep and let her nap until they brought the dinner tray. Despite what I thought were clear directions to the dietician, they persist in bringing her food that is impossible for her to chew with dentures. (I mean, come on, tortillas can be hard to bite through even when you’ve got your own teeth!) Thankfully, I had stopped at the grocery store and picked up a few items to supplement the bad facility food. Mom ate half a banana with some peanut butter and a few bites of applesauce, and that was dinner. She dozed off again as soon as she’d finished eating, even while sitting up at almost a 90 degree angle. I hung around until 7:30, but she never did wake up again for more than a few moments at a time, so I finally kissed her goodnight and went home for some self care.

Day three at the SNF was not a good day. I had let myself sleep in a little, then stopped at the pharmacy to fill a prescription and picked up some lunch to bring with me, arriving just before 11:00 a.m. Mom was asleep in her pajamas, and she barely woke up enough to acknowledge my presence. Despite the IV fluids, her mouth was so dry that she could hardly talk — but she was so weak, she didn’t even want to let me raise the head of the bed to give her water. “Just leave me alone,” she kept saying. “Let me sleep.” When they brought the lunch tray, I took a glance at the entrée and knew that (again) there was no way Mom could eat it.  “Try to get her to eat,” the CNA told me. “She didn’t want any breakfast.” But it was no good. I couldn’t even tempt her with chocolate pudding. I finally got her to take enough water to wet her mouth before she fell into a restless sleep again. I was really worried about her, wondering what had happened to set her back so far when she’d seemed to be on the mend.

She slept all afternoon and by dinner time was starting to seem a little more like herself, though still extremely fatigued. She even showed an interest in the meal, which was some kind of turkey sandwich with sweet potato fries, but after chewing and chewing at the same piece of turkey until her jaw was tired, she spit it back into her napkin and gave up. I managed to get her to eat one sweet potato fry, one bite of strawberry, three bites of applesauce, and three bites of chocolate pudding. I decided to stay with her until they came to clean her up and get the bed ready for overnight, and I’m so glad I did.

Only one CNA came to clean her (usually there are two), and she wasn’t very gentle or compassionate. She would have just flipped Mom onto her side if I hadn’t stepped up, taken Mom’s hand, and helped her roll over more gently. I ended up assisting through the whole process, even handing the CNA the IV bag so that she could pass it through the pajama sleeve and then back through the sleeve of the hospital gown the changed her into. I don’t mind helping AT ALL, but I shouldn’t have to. If I hadn’t been there, it’s not that I think Mom would have been mistreated, exactly… but it would have been a lot more unpleasant for her. Even with me there, verbally reminding the CNA that abraded sores on her backside are extremely painful, she scrubbed at Mom’s behind with a washcloth until Mom yelled and I grabbed the wet wipes the hospital had sent home with me and pushed one into her hand to use instead.

And that was how our first 36 hours at the SNF ended. Mom was tired and irritable, but clean and comfortably tucked into bed when I left around 9:30 p.m.

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This is a hard part

I’ve been procrastinating blogging because I had wanted to share the story and photos from Mom’s 90th birthday party in June, but first I was too busy getting ready for my annual retreat… and then when I came back, I got a shock that I’m still trying to figure out how to deal with.  It’s been so stressful for the last six weeks, I just can’t get myself into the right frame of mind to write a cheerful birthday post. I promise I will, eventually. Right now, I need to get some of what’s been happening off my chest.

The shocker: The owner of the care home called a meeting with me the first week of July to discuss “the level of care for your mother.” I walked into that meeting with my stomach in knots and the adrenaline rush making me almost dizzy. I was afraid she was going to tell me that Mom needs to be in skilled nursing and we’d have to move her. Thankfully, that didn’t happen. She outlined all the ways in which Mom’s care needs have increased in the four years she has lived there (without there ever being an increase in the charges) – from walking with a walker to wheelchair bound, from partially incontinent to fully incontinent (both bladder and bowels), the number of medical appointments they’ve been taking her to, and finally, behavioral changes.

She had mentioned a couple months ago that Mom sometimes gets agitated when the caregivers are trying to get her to do something she doesn’t want to do (e.g., toileting or get out of bed in the morning) and strikes out, slapping their hands away or even pinching them. Apparently this is only getting worse and she’s even started spitting on the caregivers. I was floored, to say the least. Here I’ve thought we were so fortunate that Mom hasn’t had the kind of personality change that is so common with dementia patients, but apparently I just don’t see it. I’m like the non-custodial parent, who comes in once a week to take the kids out for ice cream and a movie. I’m not the one who has to enforce rules, make her take her pills, etc. “She is totally different when you are around,” the owner told me.

The bottom line is that they need to increase the monthly charges so that she can cover her increased staffing costs. I understand that and it’s not unreasonable at all, but the amount by which they are increasing is problematic for us, to say the least. Right now the amount Mom pays to the board and care each month is within $10 of her monthly income from social security and my dad’s VA pension. The monthly cost is going up by $500. I have no freaking idea where that money is going to come from. Also, re: the behavioral issues, the owner asked me to talk to her doctor about prescribing some kind of medication to “keep her calm.” I’m afraid that if we don’t do that, she might tell us that Mom has to move.

Mom got referred to a new neurologist (because Dr. O is no longer part of her insurance network), and I asked him about prescribing something to help with the agitation/aggression, but since this was his first time seeing her, he was reluctant to do that and told me to talk to her primary care doctor. I brought it up with the primary care nurse at her most recent visit, but didn’t have a chance to talk to Dr. G when Mom wasn’t present. (And there was no way I was going to discuss her spitting on the staff in front of her — she’d be horrified, and she’d never believe she does anything like that.)

Meanwhile, she’s had a cough with chest congestion on and off since late June. When I visited her on July 4 after 9 days away, I learned her oxygen saturation had been dropping into the mid-80s and they were giving her supplemental oxygen. I called her primary care doctor and he ordered a chest x-ray, which was done on July 6 and showed “a little fluid in her lungs.” Long story short, after a visit to the pulmonologist and another visit to the primary, she is still coughing and the one thing they prescribed (albuterol in a nebulizer) seems to help the symptoms for a while but doesn’t stop it. I am both concerned and starting to get really frustrated.

I don’t write much here about what’s going on in my own life, except as it relates to being a caregiver, but here are a couple of things that have happened in the last year. On September 1 of last year, I was laid off from my job after almost 7 years in that position and a total of 13 years with the company. I got a good severance package, so I wasn’t too worried at first and I was grateful to be able to take time off to devote to Mom’s care. I started job hunting in January, never imagining it would take so long to find a job. Then in April, I got really sick with a flu that turned into pneumonia. I spent two weeks in bed and another two weeks slowly regaining my strength. And because I was sick in bed, I missed out on the opportunity to interview for a job that I think would have been a perfect fit for me. I did finally land a temp-to-hire position through a temp agency, which I started in early May. But it pays about 2/3 of what I was making at my old job, so my monthly paycheck doesn’t even cover all of MY regular expenses, much less allow me to subsidize Mom’s care to the tune of $500/mo. Most of my severance pay is long gone, and I’d been holding onto what is left in the hopes of paying off one of my substantial credit card bills. But unless I get a better job in the next couple of months, I’m not going to be able to avoid spending the last of the funds just to keep the bills paid. And I have no idea what we’ll do when my savings runs out.

So, yeah, it’s been a little stressful.

The one bright spot on the horizon right now is that I’ve applied for Medi-Cal (California’s version of Medicaid) coverage for Mom, and an eligibility specialist who did a review for us has assured me that she’ll qualify for the full coverage without a share of cost. Medi-Cal won’t pay for board and care costs, only for skilled nursing, BUT they will cover all her prescriptions and co-pays and her monthly premium for Medicare Part B, which would give her about another $125 a month.  And if they will pay for incontinence supplies, that would help even more. It’s not enough, but it’s something. And in the event that she does eventually require skilled nursing, we will at least have that option. Though I HATE the idea of her living in some horrible nursing home like the place she’s been after her hospital stays, and I will do everything in my power to keep that from happening. And I also hear that it can take months to get a Medi-Cal bed in even a mediocre nursing home, so it’s not an option in the short term even if we wanted it.

Well, I have to wrap this up now so I can take Mom to get a chest x-ray. The last round of labs showed an elevated white blood cell count, which may indicate an infection, but Dr. G didn’t want to prescribe antibiotics without first getting a chest x-ray. I’m hopeful we’ll get to the bottom of what’s causing this chronic cough soon and that there will be something they can do to treat it. I’m trying to stay hopeful about the financial situation too and trust, as Mom does, that it will all work out. But that’s a lot easier said than done. If anyone has any advice on that front, please feel free to comment here or email me, if you have my email. Thanks for listening.

 

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.

 

 

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.