Emergencies

When your life depends on power

A week after the third time Mary almost died, early in November 2014, a Trilogy non-invasive ventilator was delivered as a replacement for the BiPap/AVAPS. The Respiratory Therapist spent over three hours making sure the settings were just right for her, and was very patient with Mary’s intense anxiety. In addition to the internal and external batteries in the Trilogy, Mary had requested and gotten insurance approval for a second external battery. It took some time for her to adjust to the differences between the Trilogy and the AVAPS; the biggest challenge she had was adjusting to talking with the increased power of the breath support and air volume (which she needed).

The first night she was on the Trilogy, I was up most the night adjusting and re-adjusting settings and alarms that kept going off every time she fell asleep.

People had always suggested contacting the electric company and requesting priority power restoration. I had contacted the electric company shortly after the second time Mary died, trying to be prepared for winter storms. It turns out not every area/community/company offers that option. In our rural area, when I called about getting a medical alert set for the home address due to life-sustaining medical equipment, the power company told me that their only suggestion was that I get a generator, or call an ambulance for a ride to a hospital that would have power. If we had a power outage, we were on our own. Restoring power was based on the number of customers impacted. Fortunately, we already had a portable generator that I had purchased for doing work around the property, and I did keep gas on hand, but only a couple of gallons.

Less than a week later, I was at work when I got a call from the caregiver that a big storm had knocked out the power at the house. The Trilogy seamlessly switched to battery mode. There was no panicked scrambling for the backup battery. Another life-threatening crisis had been averted because of the previous week’s incident. I had the caregiver hook up the land line phone in case she needed to call 911, and then I called the neighbor to come down and fire up the generator. The power company had no ETA for when our power would be restored. It was cold The caregiver spent the next four hours alternating the generator power between the Trilogy, the Kangaroo feeding pump, the lights, an electric blanket and a portable heater. I checked the forecast before I left work; it called for high winds, snow and ice moving in over the next 24 hours, so on the way home, I picked up a 5 gallon can of gas for the generator in case we lost power again.

Literally as I pulled up to the house, the power came back on. Mary was bundled up under multiple layers, but was joking with the caregiver. Despite the unexpected and early winter storm, we did not lose power again that time.

When someone is dependent on equipment to breathe, when they have no ability to breathe on their own, backup power is crucial. Having the Trilogy with its rechargeable internal power supply kept Mary alive. Having a generator ready to go with gas on hand helped keep her alive. Having a neighbor who happened to be home and willing to help out was priceless. All of this meant there was no “fourth time Mary almost died.”

By bansagart, ago

The Second Time

The second time that Mary almost died was in the early hours of October 3, 2014 – 10 1/2 months after diagnosis.

She woke me up at midnight complaining the nose pillows on her bipap were leaking. By this time, she had been completely dependent on the bipap to breathe for several months. I spent about an hour adjusting straps, but it was still leaking, and she said, “this is getting scary” as she started to go into a panic attack. I went to the kitchen to find a new set of nose pillows. I managed to replace the first one and attach to the side strap, then I went to switch the tubing to the new nose pillow from the old one and COULD NOT get it to connect. I usually made all those changes when the bipap was off; with the air pressure on, the tubing would not connect.

By 10 months in, Mary had lost strength in her hands and arms, and she discovered she could no longer hold the nose pillow to her face while lying down. I grabbed the nearby ambu bag and started bagging her while trying to get the mask back on, only to discover that she no longer had the arm strength to push down hard enough on the ambu bag to get air – that had been her plan if her mask failed – and that the ambu bag was not really an ambu bag but one modified as a breath stacker, so it was not very effective. I was standing over her at 1 am, bagging her and trying to figure out how the hell this was going to turn out.

I had her activate the Lifeline alarm she wore on a chain around her neck. The monitor was in the living room, and I heard a voice call out, “Mary do you need help?” I yelled “Yes!” over and over, knowing that even if they didn’t hear me, they would send paramedics and an ambulance. A minute or so later, I hyperventilated her and ran to unlock the door (so the paramedics wouldn’t kick it in again), but I completely forgot to turn off the burglar alarm. I went back to bagging her before I realized that, and I couldn’t stop bagging her again. A few minutes later, four burly guys (2 from our volunteer fire department and 2 paramedics who had been here a few times before) arrived. They were trying to ask me what was wrong and I was yelling directions at them over the screaming house alarm, the bipap patient disconnect alarm, and the barking dog.

I told the fire captain to grab the other ambu bag from the kitchen and take over bagging her so I could turn off the alarm and fix her nose pillows. The paramedics got on it, saw her O2 saturation was 76 (definitely not good) and added a bit of oxygen while I quickly detached her feeding tube (oh goody another alarm going off) so they had room to work. With the extra help, I was finally able to attach the nose pillows the rest of the way and slide the bipap mask back on her face. At that point her O2 sats jumped back up to 100, I got all the alarms turned off, and made sure she was ok before finishing up paperwork with the EMTs. As I told them, I just needed another set of hands.

It was after 3 am when I crawled back under the covers. The new plan was for her to mention the nose pillows were leaking BEFORE the evening caregiver left at 10 pm, so that we would have two pairs of hands to take care of it. The paramedics suggested we keep O2 on hand so she could recover more quickly if something like that happened again. I also started to keep a complete back up mask and tubing, already assembled, with her at all times so that a switch out could happen much more quickly.

This type of thing happened frequently, although not with such close calls. People don’t realize why family caregivers are always so stressed and exhausted. I was too exhausted to tell anyone about it. I had no energy to call anyone. My days were sleep-deprived, food-deprived, stressed, worried, physically and emotionally exhausted. It is nearly impossible for ONE person to care for someone with this level of advanced ALS, even with (unreliable) paid caregiver help. “Call if you need anything” asks the impossible. Please check in with family and friends who are family caregivers – don’t wait for them to ask for help. They may not be able to.

By bansagart, ago

When you need to go to the hospital

I live in a small town – population 600. We have a fabulous volunteer fire department with volunteer paramedics who work closely with the local ambulance company. I know because while Mary was alive, they were frequent visitors at our home.

The closest hospital is 12 miles away. They know nothing of ALS; they didn’t even properly treat Mary’s bloody nose well before her diagnosis. Long story. Suffice it to say there is no way in hell she would go there (neither will the ambulance drivers). The next closest hospital is 19 miles away. We went there several times, when it was “unplanned/urgent”. The hospital next to the ALS Clinic is 29 miles away; that’s where we went for “planned” stays.

Some tips to share from my experiences:

1. Before an emergency: Contact your local Fire Department. Let them know someone at the address has ALS; educate them in advance if you need to.

2. Before an emergency: Contact the ambulance company. Have them flag your address with someone who has ALS, who may be unable to communicate, and what equipment they use.

3. ALWAYS go to the ER by ambulance. You do not want your pALS hanging out in the waiting area, exposed to who knows what, with a compromised ability to shake off even a cold. “Walk-ins” are automatically lower on the triage scale; if you come in via ambulance you will be in a treatment room immediately.

4. Arrange ahead of time with your ALS clinic; if your pALS can wait, have ambulance personnel take them to a larger hospital. Tell them it is “Physician Request”.

5. If your pALS uses a bipap/avaps/vent, send it on the ambulance with them. Have them plug it in to the ambulance outlet so they are actively using it when they arrive. It will make it harder for the ER personnel to think “oh they don’t need it, it’s just a cpap” if they are already on it. They may, for liability reasons, want to switch your pALS to the hospital’s equipment. That’s fine; they can get the settings right much more quickly with the home equipment there.

6. If there is any chance your pALS could be admitted, take your Cough Assist with you. Small town hospitals may not have one; larger hospitals may take days to track theirs down. Same goes for feeding tube supplies and formula.

7. Always have an updated medication list; while waiting for the ambulance, note the date, time and dosage of the last time they received each meds. Send it with them on the ambulance, along with a list of any allergies. Don’t trust that the hospital will have them on file just because you’ve sent them before. Take copies of these with YOU: POLST, Five Wishes, Living Will, Medical Power of Attorney, DNR, etc. I always had the originals and copies so the originals never left my hands.

8. If your pALS has trouble communicating, take any communication equipment with you to the hospital.

9. Don’t be afraid to challenge the ER personnel about what your pALS needs. Ask if they are familiar with ALS. Ask if they have a neurologist, pulmonologist, respiratory therapist available. Give them the numbers of your pALS’ doctors and suggest they call for a consult.

10. If you don’t get what you need, if you are being brushed off, ask to speak to the Patient Advocate or Quality Management team. Often this is enough to get them moving.

Call on your ALS Community – other CALS, widows, family members. Let them know what support you need. There are a lot of experienced folks around. But also remember every pALS is different, every pALS has a different medical history; what is right for one person is not the best choice for another. Trust your gut.

By bansagart, ago

The first time

The first time Mary almost died was January 2014, only a month after diagnosis. We hadn’t told anyone yet about her diagnosis. She had started using a bipap to help support her breathing but wasn’t completely dependent on it. We did not have caregivers in place – we didn’t realize she needed them yet – and I was at work. At about 3pm, she left the bipap in the living room and went to the master bathroom. Getting up from the toilet, she fell. She didn’t injure herself, but she couldn’t get back up off the floor. An hour later, she had managed to slowly butt-scoot her way to the dresser (about 15 feet away) while struggling to breathe, and used her cane to hook her fanny pack off the dresser. Inside the fanny pack was a deactivated cell phone. On the verge of passing out from lack of oxygen, she managed to dial 911. When the paramedics and sheriff arrived, the sheriff had to kick in the door since she always kept it locked when she was home alone. The paramedics carried her to the living room and put the bipap on her, staying with her until her pulse ox was back up to normal range. A little after 5, I called to let her know I was on my way home (like I had done every single day for 10 years), she started with “I’m ok, but we need to get the door fixed”. That was when I realized how quickly things were going to change. I called a neighbor who came right over and fixed the door. The bipap made its new home on the seat of the walker, and I attached it to a 50-foot extension cord so it could move around the house with her. No more going to the bathroom without the bipap. Go to the nearest bathroom, not the one you like the best. Use the walker, not the cane. Always keep your cell phone on you. I began to wonder how to keep her safe while I kept working so that we had a place to live, and I realized whether she wanted to or not, it was time to tell them family.

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By bansagart, ago