Caregiver Journal – Anxiety and Tachycardia

It’s been a rough couple of weeks. Several times, Mary has waken up and asked “where am I?” and “why am I here?” The anxiety has been back, and her pulse rate was up a bit. When I visited last Sunday, she had the best day she’s had in months – she smiled, she listened to Harry Potter (audiobooks) with me, she was awake almost the entire time I was there.

Then Sunday night, the anxiety started up again. Meds weren’t helping, her pulse rate kept climbing, and her blood oxygen levels were slowly falling. Tuesday, they added oxygen to her ventilator (she is normally on room air). Wednesday night when I skyped with her, her pulse was running between 140-150. That night around 3am I got a call; anti-anxiety meds hadn’t helped, pain meds hadn’t helped. They had done an EKG and she was in what they termed “A” flutter. I told them she had never had that before. We discussed options, and decided to try an IV medication first. I asked them to call me back with an update. About an hour later, they called me back to say she was back in normal sinus rhythm and her pulse rate was down around 80. All the follow up tests of cardiac function and tests for blood clots came back normal. We have no idea what triggered the atrial fibrillation.

The Respiratory Therapist was concerned that the inflated cuff in her trach tube (that holds it in place in the throat) might have a leak, so it was changed out completely for the first time. When I visited her Thursday night, she slept the entire time I was there, but her vital signs were all within normal range and her face was relaxed for the first time in two weeks. They turned the extra oxygen off. As of today, she is still on “room air”, her vital signs are normal, there have been no more heart issues. She has been asleep since before I got here two hours ago; she hasn’t woken up.

Also this week, In the middle of all of this, I called the ALS Clinic for a letter to trigger durable Power of Attorney. Mary is completely paralyzed and physically unable to manage her financial and legal affairs. Her facial muscles are also starting to have issues, so it is getting harder to read her lips when she mouths her words. The eye gaze device is still not working for her. The speech therapist who had been working with her had her hours cut to half-time and she has been unable to see her for nearly a month.

And Adult Foster Home #3, after three weeks of not returning phone calls, called the social worker late Wednesday and said they were “declining” Mary’s case because they didn’t realize she was on the vent 24/7, which is ridiculous because we told them that three weeks ago. Out of the nine homes in Oregon licensed to care for patients with ventilators, three have not worked out. She is still on the waiting list for the other 6. Now we wait for another bed to open up, and hope it is a reasonable distance. There is only one more option that is close to my route between work and home; the other five are anywhere from one to two hours away. Last week, Mary said that if this group home didn’t work out, she wants to wait for the next one, because she wants to have a chance to find out if she can find a way to communicate, which seems like it can’t happen until she is released from the hospital. I do have the number for the local sales rep for her eye gaze device; I plan to call her next week and see if she can come in and help us find something that will work.