Tag Archive | illness

Diagnosis: NPH

No, not Neil Patrick Harris… Normal Pressure Hydrocephalus. I’d never heard of it until Thursday, when Mom finally had her follow-up with the neurologist.

In layman’s terms, what it means is that Mom has an excess of cerebrospinal fluid in the ventricles of the brain, which causes the ventricles to enlarge and press on different parts of the brain. The most common symptoms are balance/gait issues, mental confusion (dementia), and urinary (and occasionally bowel) incontinence. Check, check, check. Dr. O said that the CT scan is not definitive on this, but that since the ventricles do appear enlarged on the scan and Mom has all the classic symptoms, it is by far the most likely cause. And check out this more detailed list of symptoms I found on WebMD.

Symptoms  include:

  • Memory loss
  • Speech problems
  • Apathy (indifference) and withdrawal
  • Changes in behavior or mood
  • Difficulties with reasoning, paying attention, or judgment
  • Walking problems
  • Unsteadiness
  • Leg weakness
  • Sudden falls
  • Shuffling steps
  • Difficulty taking the first step, as if feet were stuck to the floor
  • “Getting stuck” or “freezing” while walking

My mom has had every. single. one of these symptoms over the past year.

Unlike Parkinson’s Disease or Alzheimer’s, there is a treatment for NPH that can sometimes reverse most of the symptoms. But it is very invasive. A neurosurgeon drills a tiny hole in the skull and puts a shunt into the ventricles to drain the excess fluid to another part of the body. The success rate is highest for patients who are only exhibiting the gait disturbances and have little to  no dementia or incontinence. Dr. O said that many neurosurgeons may refuse to do the procedure on someone with my mom’s health issues and advanced dementia. Understandably, I think. If my mom were a decade younger and this procedure had a chance at reversing her symptoms and giving her another 10-15 years of a normal life, it would be worth exploring. But at this point in the game, I think the risks of anesthesia outweigh the possible benefits.

I left the neurology office with my head spinning, wishing with all my heart that my dad (a former anesthesiologist) was still alive to counsel us on what to do.

When I brought her back to the care home after our appointment, we pulled into the driveway and she asked “Is this my place?” I answered in the affirmative. She said thoughtfully, “They picked me up from another place, my friend’s house. I don’t know if I’m ready to be alone here.” Oh no, I told her, you won’t be alone. This is where you’re staying with the other ladies. “Good,” she said.

There is no other treatment for NPH, no drugs that have been found to be particularly effective. So we stay the course, basically. The neurologist is increasing her dosage of the Parkinson’s drug, which may still have some benefit for her balance and gait (so far it doesn’t seem to be doing much), and she’s staying on Namenda in the hopes of slowing the mental deterioration. Dr. O said that it’s likely she will worsen considerably “in a couple of years” and require a higher level of care. But she’s turning 86 tomorrow, she has congestive heart failure, atrial fibrillation and chronic kidney disease (either stage III or stage IV)… and she might only have a couple years left here anyway.

So I’m really just hoping that the drugs will keep her symptoms in check and give her a couple of pleasant  years at this wonderful care home with the friendly residents and caring, compassionate staff.

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Unacceptable

I got a scare on Friday evening. I almost didn’t go visit my mom, since I knew I’d be spending most of the weekend with her, but I had picked up some more Ensure and ginger ale to keep in her mini fridge, so I thought I’d just drop it off and check on her quickly. She was lying on her bed when I arrived around 6:30, oxygen canula in her nose, and she said she was feeling tired and “not so good”. I put the beverages in the fridge and sat by her for about twenty minutes, holding her hand and talking and reading to her from her book of daily devotions.

I was getting ready to leave when it occurred to me to check her oxygen level with the finger oximeter. Good thing I did – she was down to 77! It scared me that her oxygen level could be so low while she was hooked up to the oxygen generator. I went to check the generator and discovered that it was OFF. Apparently whoever had taken her down to dinner had turned off the generator and failed to turn it back on when they brought her back to her room.

Un-freaking-acceptable.

I turned it on and turned the oxygen level up to 4, and I stayed with her and waited until her sats came up to the acceptable level of 90. I tried not to think about what might have happened if I hadn’t come by to check on her that evening.

Losing My Cool

Despite my best intentions about being the “voice of calm” for my mom right now, I lost my cool yesterday. I arrived to take her to a doctor’s appointment, found her room warm and stuffy (the portable AC not working properly), and couldn’t figure out how to get her switched from the oxygen generator to the portable oxygen tank. And I melted down, right there in front of her. I panicked. I raised my voice. I was the exact opposite of calm.

I rang her call button and got a caregiver to come help me with the oxygen, and then I pulled it together. But navigating a wheelchair and a portable oxygen tank on a little wheeled stand is a skill that will take me some time to master, and the whole trip to the doctor was difficult and stressful. After my little freakout, I held it together – but I wasn’t the calm, soothing presence that I always try to be (and usually am) with her.

We stopped at Foster’s Freeze on the way home from the doctor and I bribed her to eat with a caramel milkshake, which I think was the first food she’s taken more than two or three bites of all week. (At this point, I don’t even care about healthy food. I just want her to eat something. Anything.)

I’m worried that she’s still so weak and her oxygen levels are still so low. I’m afraid that when we get a new blood culture done next week it’s going to tell us there’s still infection. But there’s nothing I can do about it right now except keep a close eye on her. As a result of this worry, when the home care agency told me that the home health nurse who evaluated her on Tuesday had determined there was “no further need” for nursing care, I lost my cool again and almost shouted at her: Are you freaking kidding me?!

Deep breaths.

Another “Nurse Ratched” Vent

I was in the middle of a meeting with my boss when my cell phone started buzzing – a call from my mom’s phone, and she NEVER calls me (I don’t think she remembers how). I excused myself from the meeting to take the call, fearing an emergency. It was the Care Director (aka Nurse Ratched). I asked if something was wrong, is my Mom OK?

“Oh, she’s fine,” said Nurse Ratched. “But she is ADAMANT that she won’t get up, won’t get dressed, she just wants to stay in bed.” Her tone sounded cross, impatient.

“She’s sick,” I said, startled. “She just got home from the hospital.”

“So I should just let her stay in bed?” she demanded, in an incredulous tone like she can’t believe that’s going to be my answer.

“She’s been very sick and she’s still weak,” I replied. “Let her rest. Just don’t give her pills on an empty stomach. Make sure she has some food with them.”

I explained that I have to take my mom to the doctor this afternoon and would be there to pick her up between 2:00 and 2:30, so she would need to be dressed in time for that. But until then, yes, it’s perfectly fine if she stays in bed.

For crying out loud, has this woman NO empathy?! This is an 85-year-old cardiac patient on oxygen, who was just discharged from the hospital the day before yesterday. Isn’t it understandable, even necessary, that she get a lot of rest? Why does this b*tch need to bully her into getting dressed at 8:30 in the morning?

Man, I can’t wait to get my mom out of there! Counting. The. Days.

Discharge

Mom was discharged home on Tuesday evening. I thought for sure they’d send her to skilled nursing rehab first, not straight back to her assisted living facility, and I have mixed feelings about it.

I don’t think she was ready to go home. She’s still so weak she can’t get off the toilet without help, even with the grab bars in her bathroom. They sent her home with oxygen, thankfully, but I called yesterday morning and discovered she’d taken the canula off when she went to the bathroom and forgot to put it back on. She barely ate yesterday, only half an Ensure shake for breakfast and a few bites from the lunch and dinner trays they sent to her room.

If my aunt and cousin weren’t arriving on Saturday, I would have pushed for her to be sent to rehab for a week. I think she needed a few more days of bed rest. Then again, hospitals and nursing homes can be the worst place to be when your immune system is vulnerable; so maybe she’s safer at home in her room. Still, I will be so relieved to have family here to spend time with her during the day while I’m at work next week. We just need to get through two more days…

Fastening My Seat Belt: Turbulence Ahead

I was bracing for another cognitive decline to follow this hospitalization, but she seemed so lucid and aware yesterday that it caught me off guard when I got a voicemail from her shift nurse this morning saying my mother was concerned that I might not know she was in the hospital. I was with her for six hours in the ER on Sunday night and for about seven hours yesterday. She seemed as sharp and aware as she ever is when I left last night. But this morning, all of that had been erased. She didn’t know where she was or how she got there.

I had to go back to work today; I couldn’t afford another day off and it’s a day full of meetings that require my support. I had no choice, but I felt guilty for not being there. At my first opportunity to get away from my desk, I called the hospital and was transferred to her room. She fumbled a bit with the phone, dropping it twice before finally answering. In a halting voice, with long pauses as she struggled to find words, she tried to explain something about the phone, about why she’d had trouble answering. Finally she gave up and concluded “Oh well, I’m talking now.”

I asked her how she was feeling and she told me she feels fine, just really confused. “There are huge holes in my memory,” she said. “I don’t know where I am or what’s real.” She sounded frightened. I tried to reassure her by explaining that she’s in the hospital because they found an infection in her blood which is being treated by IV antibiotics. I told her that I had brought her to the ER on Sunday night and had stayed with her most of the day yesterday, but I had to go back to work today. “I don’t remember any of that,” she said anxiously. I gently told her that it’s OK, that she’s safe and in good hands, and she just kept saying how confused she felt. I suggested that the confusion might be caused by the infection because the last time she was sick enough to go to the hospital she experienced the same thing. Then I just kept reiterating that she’s in good hands, getting good care, and has lots of people praying for her.

The last time she was hospitalized, she took a significant cognitive decline and never recovered a lot of her prior functioning. If that happens this time, I don’t know how much more of her essential personality and nature will slip away from us. I’m scared, but I can’t let her see that. I have to be the voice of calm, like the flight attendant reassuring passengers startled by turbulence that if there is a loss of cabin pressure oxygen masks will automatically drop. Meanwhile, I’m fastening my own seat belt because this is going to be a bumpy ride for a while.

A Long, Hard Day

Sunday morning I went to pick Mom up for church, like I always do. As I approached her room, I saw a woman in scrubs talking on a cell phone. “Time of death was 7:30 a.m.,” she was saying. It gave me a little shiver, felt like a bad omen. I tried to shrug it off.

Mom was lying on her bed, fully dressed. She had forgotten it was Sunday (despite my wake-up call less than an hour earlier to remind her) and was surprised to see me. She sat up and drank half of an Ensure shake for me, but she was feeling “off kilter” and we decided to skip church. Her face and hands were puffy, and I thought her breathing sounded labored. I almost took her to the ER, but she kept insisting she was fine and I didn’t want to subject her to the ordeal of an ER if I might be overreacting. I stayed with her all morning, ordered her lunch to be sent to her room on a tray, then left to get my own lunch. When I checked on her a couple hours later, she was sitting in her chair reading. The puffiness was gone from her face and her breathing sounded normal. I was much relieved. When it came time for dinner, I started to walk her down to the dining room – but she didn’t even get halfway to the elevator before her legs felt so weak she was afraid of falling. A caregiver came and pushed her the rest of the way on her walker seat. I kissed her goodbye and went home, intending to call her doctor first thing in the morning.

Around 8:00 that evening, I got a call from the on-call doctor at her primary care physician’s office. The lab had just called with the results of the blood culture they did nine days prior, which showed that the urinary tract infection had gotten into her bloodstream. He advised me to take her to the hospital ER of our choice, tell them to call him, and he would explain about the test results and that he wanted her admitted to receive IV antibiotics. When a doctor calls you on a SUNDAY NIGHT and suggests you take your loved one to the ER, you’d better assume this is something to take seriously.

Mom was asleep in bed (still in her clothes) when I arrived. She was confused about why we were going to the ER (“But I’m not sick!”), but she didn’t argue when I told her that her doctor had called and wanted the hospital to treat her for an infection in her blood. I borrowed a wheelchair and off we went.

We spent a very long night at the ER – five hours from check-in until she was finally transferred to a room at 2:00 a.m. I told every new ER staff person who attended us, from the receptionist to the ER doctor, what her doctor had told me. I had hoped it would fast track her admission, but no… They did the full battery of tests and x-rays themselves, and we waited four hours for the results to come back before a decision was made to admit her. Her oxygen sats were very low (about 84) when we arrived and the first blood pressure reading was 213/111, which really scared me. It was clear that the ER staff were concerned by those numbers also. They got her into an oxygen mask, started IV antibiotics right away, and the doctor ordered an IV drug to bring down her blood pressure also. As the night wore on, Mom got increasingly confused and cranky. “Where are we?” she asked me several times. “Why did we come here?” “Why have they just left me lying here for so long?” I focused on being patient and positive with everyone, especially Mom. When it got to be around 12:30, Mom started telling me that I should go home and get some sleep. “You don’t have to stay with me. I’ll be fine.” Yeah, right… Less than five minutes later, she was back to asking “Where are we? What am I doing here?” I couldn’t have borne the thought of her going through that alone.

At 1:15 a.m. they told us they had a room for her and a tech would be along to take her up in about 15 minutes. Mom started asking me “how many more minutes?” — like a little kid on a road trip saying “Are we there yet? Are we there yet?” Forty minutes later, the promised tech finally arrived to wheel the gurney and a nurse escorted us up. Her blood pressure had only come down to 198/84, but the nurse assigned to her room assured me they would monitor it through the night. At 2:45 a.m., I finally left to try and get some sleep.

I called in sick to work, got about six hours of sleep, and spent the rest of the day at the hospital with Mom. It took most of the day, but they finally got her blood pressure down to a healthy range — 138/65 was the best reading I’d seen in a long time. One of the nurses told me that the hospital doctor was consulting with a cardiologist and would likely recommend changing her blood pressure medication. I also found out that, despite all my requests in the ER, no one had actually called her PCP’s office until this afternoon. When the PCP’s office faxed over the results of her blood work, they discovered that the two antibiotics they’d started her on in the ER were completely ineffective for her type of infection. Great. Not only did they keep her waiting for four hours for lab results, they also delayed effective treatment by about 18 hours. I’m not very happy with that ER right now.

I am, however, grateful that the doctor assigned to her seems very competent and proactive and that she’s getting attentive care from all the nurses and aids. I am also grateful that we caught this before she could become gravely ill or risk a stroke from the elevated BP. And I’m grateful that, despite the ordeal of the ER and getting only short “cat naps” of sleep last night, she was alert and in good spirits today. I know she’s in good hands, and tonight I hope we can both get a decent night’s sleep.