Tag Archive | caregiver anxiety

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.


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!



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.



Not Good Enough

A friend of mine has talked to me about the concept of “good enough” parenting, or caregiving as the case may be – about accepting that it’s impossible to be a perfect parent/caregiver and letting it be “good enough” to know that the vulnerable person in your care is safe, well fed, clothed and getting necessary medical attention. Today was not a good enough caregiving day. We came so close to disaster today that I’m still shaken.

Mom was referred to a gynecologist for a pelvic and breast exam due to some symptoms her PCP had noted on her last visit. I made arrangements for her ALF driver to take her to the appointment, where I would meet her. I told her about this last night and again early this afternoon. We’ve done this a couple of times and it worked out fine. But this is a new doctor in an unfamiliar office building, and maybe I should have realized that would be harder.

When I arrived ten minutes before her scheduled appointment (I meant to be earlier but LA traffic didn’t cooperate), I found her sitting on a bench in the building lobby. She had her purse in her lap and was going through her wallet. I walked up behind her and put my arm around her. “Have you been here long?”

“I’ve been here a very long time,” she said. “I don’t even belong here. Someone brought me here, I don’t know who, and they just left me here hours ago. I don’t even think he knew where I was supposed to be. He just thought he could leave me here.” She met my eyes, finally. “I was so confused,” she added. “I didn’t know I could be so confused.”

Do I need to tell you just how hard it was to hear that? It’s hard to even put the words in print, they hurt so much.

I sat next to her, held her hand, and told her that I was sorry they brought her so early and just left her here. I explained that she WAS supposed to be here because I had made a doctor’s appointment for her, and that if I had known they were going to bring her early I would have come early too. “I don’t think they knew about your appointment,” she said. I didn’t try to argue that point. I checked the time on my phone and asked if she wanted to go on up and see the doctor, since we were here. “Might as well,” she said.

I was angry that they had apparently dropped her off in front of the building, instead of taking her up to the actual doctor’s office on the third floor. I was angry that they brought her so early and didn’t let me know that’s what was happening. As we rode the elevator, I took deep breaths and tried to stay calm and smiling, for Mom’s sake.

I found her a seat in the waiting room, signed her in, and picked up the clipboard of paperwork to fill out on her behalf. I had called her ALF a couple hours before the appointment to ask them to send a printout of her medication list with her. I asked her if they gave her that. She said she didn’t think so, checked her purse, checked the basket of her walker. No med list. I called the facility and asked them to fax the med list to the doctor’s office. While I had them on the phone, I asked if they could tell me what time she was dropped off. “Well, they left here at 2:45,” I was told, “so probably around 3:15.” For a 4:00 appointment. She was alone and confused in a strange place for 30-40 minutes, and I totally understand how that could feel like hours.

(Sidebar: When I was eight or nine years old, my mom forgot to pick me up from school one afternoon. We were leaving the next day on a family vacation and I’m sure she was busy packing and lost track of time. I remember sitting outside the school, watching the other kids get into cars and drive away, one by one, until there were only a couple of cars left in the parking lot. I have no idea how long I waited, but it felt like hours. Finally a teacher came out and asked me if I wanted to come in to the office to call my mom. “Yes, please,” I said. “I think she forgot me.” It was the most awful feeling. I thought about that today and I wondered what it must feel like, as an elderly adult, to think that you’ve just been dumped somewhere that you don’t belong and forgotten.)

I went to the desk to tell them that her medication list would be faxed over momentarily. The girl held it up. “We have it,” she said. “She brought it in with her. Here,” she added, handing me another form. “I don’t think she filled this one out before she got up and left.”

Wait. What?

So, I guess the driver did bring her to the doctor’s suite. But she must have gotten confused, perhaps when they gave her all that paperwork to fill out, or because I wasn’t there – and so she left. Oh hell. My mom has never “wandered” before, never attempted to leave the place where she’s been asked to wait. It had never occurred to me that she would just walk out of the doctor’s office before I got there. Thank God she stayed in the building lobby! If she had just wandered off, out of the building, I don’t know how – or where, or in what condition – I would have found her. Holy panic attack, Batman.

We got lucky this time. She didn’t leave the building, or have a heart attack or a mini stroke from the stress. She was confused and unhappy while she was waiting, but she calmed down right away once I was with her. She did think it was rather absurd to be seeing an ob/gyn at her age (because of course she doesn’t remember the symptoms that made it necessary) and she did NOT appreciate the pap smear, but the female doctor was as gentle and kind as could be, and it was over quickly.

The silver lining of dementia is that even traumatic stuff is quickly forgotten. By the time we were in the car talking about where to go for dinner, it had all been wiped from her memory. “Good to have that over with, isn’t it?” I said, smiling. “Good to have what over with?” she asked, looking puzzled. “Never mind,” I said. “I’m going to take you out for dinner. What would you like to eat?”

The “good enough” parent or caregiver knows she can’t be perfect. She knows she’s going to make some mistakes, but she learns from them. Lessons learned: No more ALF shuttle for Mom. I will personally pick her up and take her to any appointments, though it will mean an extra 60-90 minutes of lost time from work. And no more leaving her alone and unsupervised in a strange place. Never again.