Last time I wrote about dad’s heart attack which occurred almost immediately after I left home for a winter vacation. Dad was admitted into the hospital because he had a second heart attack while in the emergency room.
Dad’s nurse companion was an enormous help to me while he was in the emergency room (and I was hundreds of miles away) and later while he was still in the hospital. Even after I returned home, I was so stressed and panicked that I couldn’t figure out how to do everything I needed to do during daytime working hours. I was supposed to be making phone calls and I felt like I needed to be dad’s advocate in the hospital. I decided to ask if dad’s nurse companion could spend a few hours with him in the hospital each morning and then I would get there just as his lunch was arriving.
This left me a few hours each morning for phone calls and shopping. I had cleaned out the refrigerator and freezer before leaving for vacation and there was literally no food in the house. I had to restock for my immediate needs while trying not to purchase too much. I also had to telephone my long term care manager and others to help me determine what kind of long term placement would work best for dad.
My goal for years had been to avoid another bad nursing home experience. Yet he could not get hospice care at his current Assisted Living Facility. They had neither the skilled staff nor experience for a resident in dad’s serious condition. They also had a policy of no hospice unless the family hired 24 hour nurses to be with the resident.
I arranged for dad to vacate that facility as it was clear he would never return. I telephoned the cable and telephone companies to discontinue his service and arranged for a mover to remove all his furniture. My daughter accompanied me on 3 separate trips to his room at the ALF to remove all his clothing and belongings, clean the room and confirm that we had not left anything behind.
Each day my son or daughter or both met me at the hospital after work and stayed for a visit with dad and then drove me home. I emailed my sister and brother to come now if they wanted to see dad while he was still able to communicate. Both live a distance away and neither came.
I was fairly satisfied with dad’s care in the hospital but still felt I had to be there to advocate for dad each time he needed something. He forgot to push the call button and instead just yelled that he needed “a boost” as he was sliding out of the rolling chair they had put him in. It seems like all the hospitals and nursing homes I have encountered use these rolling recliner chairs for patients. They are too big for dad and he slides out the bottom.
Ever 30 to 60 minutes he needed to be boosted back to a sitting position! I knew why they wanted him in a chair for a few hours each day for his meals and to keep him from laying down all day. Nevertheless, dad was uncomfortable in it and I had to constantly call for a nurses’ aide to help reposition him.
Then the aide would call for a 2nd person as the protocol called for 2 people, one on each side of dad, to boost him up or move him from chair to bed or back again. Since dad was on hospice, he wasn’t getting usual medical care and nurses had to spend more time with the sick patients getting treatment. I felt like he needed me there to be sure he got the attention he needed.
For the most part, I was satisfied with the care dad got in the hospital from the nurses, aides, techs, and other staff. There was only one young aide who rolled her eyes at me when I said he needed to be repositioned. She had come in 20 minutes before and by herself could only stuff a pillow on one side of dad. He soon was tilted uncomfortably and I called for him to be boosted. She said she “just gave him a pillow” and I said he needed a boost, not just a pillow. To her, he was just one more patient and she was busy. To me, he was my dad.
While in the hospital, dad ate very little. The only thing he wanted to drink was cola, and they didn’t keep it in the refrigerator in the unit. They did have ginger ale and juices and other beverages, but dad just sipped the water but often refused it. I soon learned to pick up a bottle of Pepsi each morning in the hospital on the way up to dad’s room. Most days he drank ¾ of that bottle of Pepsi and often that was all he had.
Other days he had a half banana one day or some part of his dinner another. But by the end of the week he still wasn’t hungry and often didn’t even touch his dinner tray.
Each day I talked to the hospice nurse who came by to check on dad and she referred me to their social worker. The social worker group was short staffed as a stomach bug had hit that group. After about 5 days I had a good discussion with the social worker about what I wanted to find for dad, and what she could find with any openings.
Everyone knew I wanted inpatient hospice. But if that wasn’t available I wanted one of the small nursing homes rather than the large ones affiliated with the hospital. I felt like dad needed more attention than he could get in a facility with a lot of patients.
Amazingly, after dad was in the hospital a full week, I received a phone call from the hospice social worker. She told me about a hospice bed that was available. It was a special bed in that it was called a “resident bed” and was the only one that could be occupied by a hospice patient on a slightly longer term basis. In fact, the resident bed could be occupied for 3 months or more.
The other beds were for hospice patients whose families needed a respite of up to 5 days. Another possible way was for patients to come in for up to 2 weeks to get their medications adjusted for relief of pain or other serious symptoms. Dad didn’t meet those criteria.
The only issue for the resident bed was that while all the other beds met Medicare requirements for hospice and were free to patients, this one was available only if the patient’s family paid $5000 for 2 weeks or $10,000 per month. That was just under the cost of a nursing home (which was $12,000 per month). I didn’t hesitate. “I’ll take it”. I said.
The SW explained that dad would get the exact same care in the resident bed. And in fact, the room was slightly larger. And once he met the hospice criteria, he would probably be reclassified into a regular hospice patient.
She filled out the papers and by Friday afternoon I signed them and paid for the first 2 weeks. The ambulance crew was to come at 5 PM to pick up dad and take him to the hospice which was actually just around the corner from the hospital.