We raced to get to Mom before it was too late. Once there, we were told she had been given meds to alleviate the fluid in her lungs, was in a semi-sitting position in bed, and was breathing more normally. Her eyes were rolling back in her head a lot. We were there three hours, waiting for the Hospice nurse on call. Once she arrived, she examined Mom and took her vitals. She said her lungs sounded good and so did her heart. I was only able to get one response from Mom when I talked loudly to her and said "Hi!" and she said "Hi" back. It was more of an automatic response, but I do think she was trying.
This past week, we've been in touch with her regular nurse, who had this to say:
I am your mom’s primary nurse and have just gotten back from vacation. I saw her today to assess her considering all the changes that have gone on while I was away. I was very pleasantly surprised to find her sitting up in her wheelchair waiting for supper. She answered all of my questions in full sentences and even tried to smile. Her lungs sounded clear but she would cough at times. She hasn’t eaten much today but took some small amounts of fluids. She denied pain. I ordered her pain meds orally again and I will call there in the am to see how she did. They have the injectable, too, to use if she doesn’t take the oral. We will see how she does and then look at her other meds. I will not restart the Flexeril as that may have contributed to the changes over the weekend.I responded:
I really appreciate you communicating with us this way. All three of us daughters are busy working women but want to keep close in touch with what is happening to our mother and email is an amazing tool we all use a lot to keep in touch.Susan, the Hospice nurse, responded again:
I'm thrilled to hear that Mom is doing better. What did you think Flexeril was doing exactly?
Our only frustration has been that we hear about these periods of wakefulness and communication, but since they are intermittent and erratic, we never seem to find her awake, and we'd dearly LOVE to talk with her again. It's definitely been weeks, but it feels (and may be) months since we had much conversation with her. If there is any way that staff at Eventide and/or Hospice could make a note of what they
observe and let us know your best guess as to when to visit and find her awake, we'd be eternally grateful.
We will restart the rest of your mom's oral meds today. She did well with the pain meds we restarted yesterday. I talked with Dr. Martindale's nurse and they agree with the plan to restart meds except for the Flexeril. It can cause sedation especially in combination with the pain meds and Seroquel that your mom is on. She might do ok with a lower dose, but for now, we'll not use it. As for when to visit her, I saw her about 5:00 pm just before her eve meal. That seems to be a goodGood to know. I must get up there as soon as possible late in the afternoon and visit Mom! I pray she is awake...
time for her. I know it must be frustrating for you to not find her awake. Yesterday was by far the most talkative I've ever seen her. I have also contacted Dr. Xie, the psychiatrist to see if she wants to reduce/change any of her psych meds. The NH or I will let you know if there are any changes...I did contact Dr. Xie and she ordered a significant reduction in your mom's Seroquel and Effexor. Your mom may not need as many pscyh meds now that her pain is in better control since pain may have been contributing to her behaviors. We shall see how she does. We can always go back up on
her psych meds if needed. It's just so nice to see her so alert. Pam, another Hospice nurse, will be checking on your mom for me today. We'll update you with changes.