It’s been a while since I’ve shared more of my caregiving journey. Time to catch you up!
We had a visit from a Hospice Care company in early September at the referral of the Nurse Practitioner that had visited Mom twice. The rep made things sound all hunky-dorey, as one may expect. Mom decided she wanted to think about it and she did not sign any papers.
A couple days later on a Friday we called 911 for Mom in the middle of the night (as usual) and this time she elected to go to the hospital, which indicated to me that something was serious. Many times when we call 911 for chest pains she decides to stay home once the EMTs have reassured her that her heart looks normal. This time the EMTs indicated her heart appeared normal, but she was having such a difficult time breathing and her lower legs and ankles were appearing swollen…both concerning situations.
I woke both of my brothers at 1:30am with the news, and surprisingly one of them came over to stay with Dad so I could join Mom at the ER. I’m grateful I could. Turns out Mom had a concerning amount of fluid buildup in her lungs and around her heart. They increased the dosage of her normal diuretic and administered via IV push and she was on oxygen since she arrived. I returned home around 5am, once we had an idea of what was going on. She was admitted later that day as they attempted to get both her breathing and the excess fluid under control.
That same Friday afternoon, I received a call from the Hospice Care company asking about Mom’s decision. I indicated that would have to wait as she was currently in the ER.
After several days, Mom still had no indication from the doctors that she would be released soon. Interestingly, I received another followup call on Monday from the Hospice company indicating they had word that Mom was being prepped for release some time on Tuesday. I was surprised and said Mom wasn’t aware of that because I had just been on the phone with her. My dad needed assistance, so I quickly ended the call.
When I had a second to think, I got to wondering…. how did the hospice company know details about my Mom, her condition and her status? I hadn’t given them any information. Hadn’t even told them where she was. Nor is she a client of theirs yet. This really bothered me and I called the rep back after an hour or so to inquire. She seemed to dance around my very direct questions, but shared they have “transition staff” at each hospital and rehab center so it wasn’t too difficult to find her. (This didn’t sit well with me.) The rep said she’d wait to hear from us once Mom got home to bring over the paperwork, and we ended the call. I wasn’t happy with what they did. At all.
Later that day I was chatting with my neighbor and she reminded me that she has been involved in hospice care for over 30 years. During our conversation, she filled in some details that the visiting rep left out. One comment she offered was how competitive the hospice industry is for clients, and said some companies are like “vultures”. That statement really hit home on how I felt! She also told me about palliative care and clarified the difference in the services. Thank goodness we spoke! The next day I called the hospice company back and told her to please not check up on Mom’s status as she is not yet a client, and that IF we decided to sign up with their service, we would contact them to request the paperwork. She said she understood. Needless to say, we have no intention on calling them back. Vulture indeed.
On Wednesday morning, Mom took a turn for the worse. A cardiology Nurse Practitioner called me to let me know that Mom’s blood pressure had dropped into the low 80s and that her blood test indicated she may be experiencing a minor heart attack. Since Mom had indicated she wanted no aggressive procedures done, they can only speculate on the heart attack. A later EKG indicated little to no difference compared to one a couple years ago, so that was good news. They would proceed to treat her with medicine to stabilize her as best as possible, and to do that they need to transfer her to another floor for monitoring and administering IV. The NP followed with, “if the medicine isn’t enough, we’ll need to know how to proceed”.
This wasn’t a statement I was ready to hear.
Thankfully, eventually they were able to find the right doses of meds to get Mom to a point they were all comfortable with. The fluid buildup in her lungs and chest was no longer considered ‘excessive’, her lower legs and ankles were no longer swollen, her blood pressure was consistently back to “her” normal, and her chest pains were gone. She was still having difficulty breathing, never once being off the oxygen, and now she was having difficulty swallowing. As they were transitioning her from the IV to oral meds, they were giving them to her in applesauce. After a 12-day stay, she was released.
She came home extraordinarily exhausted and weak after not being out of the hospital bed for the entire time. I had to ask a neighbor to come help me get her from the wheelchair into bed (an ambulance brought her home). A short time later, I had to call my brother over to help me get her to the commode. She was so weak, that process took well over an hour! Before I had even gotten her all tucked in, she was sound asleep and slept a solid 10 hours.
Not me though! I was concerned about her condition and how I was going to help her if things were the same (or worse) in the morning. She called me around 7:30 am needing to get to the commode, and I held my breath wondering how it was going to go. Thankfully she was feeling much much better! Still very very weak, but with a lot of extra help from me, she had enough strength and energy to make it. As hoped, she continues to get stronger each day.
After a few weeks, we were settling in to a “new normal” with a couple new medications, some tweaks to a few others, home oxygen, a new diet of easy to swallow foods, and palliative care nursing visits as arranged by the hospital doctor.
Quite a bit to adjust to….for all of us.