Stories from Caregivers: Coreen from HAWAII
HI
Coreen
FROM HAWAII
This is a story of family giving and arranging care and running into a maze in the healthcare system has evolved over a year. My caregiving duties started when my father fell in his apartment. It had never happened before, where he was not able to get up and move around on his own. He was able to pull himself up into his reclining chair in his living room but couldn't move after that as the pain was too great, so he stayed put. He was only pain free when it was fully reclined. He just stayed there. His girlfriend at the time came by to visit and tried to help but he is a very large man and could not be moved due to the pain. She contacted the building manager, but together they still couldn't get him up. They finally called an ambulance because of his severe back pain. He was admitted to Straub ER and xrays showed a lower back sprain. They were able to get him to ambulate, with pain killers, a back brace and a walker and he was released the next day with instructions to contact his family doctor for follow up and for a possible referral to an orthopedic doctor. He had difficulty changing. Again, this is the first time he was ever not able to be fully independent. So we had to come to get him up, showered and dressed, and fed and at least into his living room chair in the morning to watch tv. He also needed meals so we'd drop off lunch and dinner also. Sometimes I or my siblings or his girlfriend would trade off on morning help and dropping off food. After first discharge he was still living semi- independently like this with help and he fell again. He wasn't using his walker to get around. This time he couldn't even get to his reclining chair. He was unable to get up and was sent for the 2nd time in a week to Straub ER via ambulance. This time his pain was worse and he could not walk on his own even with a walker, so after a few days they said he needed to go to rehab to get him to be able to walk again. He went to Hale Nani for rehab. Medicare paid for everything. Administrators there said he would take several weeks of rehab. He was doing fine with his rehab and it took several weeks as they had indicated but his ability to get around with a walker was difficult. They discharged him again to home but he couldn't really get around. His ability to move around was much more limited than ever before. He fell again and went to ER again and then to rehab again. After getting close to discharge we received a call from rehab that he had aspirated food and could not breathe, so they called the ambulance, and sent him to the ER. This time he had continuous trouble breathing and getting oxygen and they had Xrays which were not conclusive. They brought in a pulmonologist, lung specialist to come in to do a scope of his lungs to see if it was food or liquid in his lungs. They found that he has aspirated food and liquid into his lungs, which caused the problems. He was unconscious from the lack of oxygen and could not communicate and they had to put a full-face oxygen mask because the others were too tight and air was leaking out. From here, due to his difficulties with oxygen saturation due to aspiration pneumonia/particulate in his lungs. They did not want to intubate him, but he was in and out of consciousness for days, and even when clear and we were there he was not always able to communicate, either in writing or talking. This is how having a parent who was completely self-sufficient and now was not able to communicate but was not fully incapacitated makes it difficult for family caregivers to be involved. Some of the issues we had to deal with were obtaining any advance directive documentation my father had. We had to arrange to go on a paperwork manhunt to find whatever he had. In speaking with our friends, our parents are often reluctant to talk about their financial situation or their end of life plans. This is their right, but makes it difficult when decisions have to be made and their desires are unknown. So over the coming weeks, we had to decided how and when we could talk to him. Who would talk to the hospital about his care, who would talk to the case managers about his care, as while there were a number of us family members and his girlfriend to help, not having a clear cut point person. We were all kind of in the dark and had to learn our way. What came as a result of all this confusion was that he did choose one of our siblings to be the Power of Attorney (durable so still good if he is incapacitated and not talking but alive), because he used to do all his bills and now he couldn't. Then his personal attorney put together his advance directives his Do Not Rescuscitate choices, and they also included a durable Power of Attorney for Healthcare Decisions. Only until these documents were executed by him, were we able to freely obtain information and be fully involved in the planning of his care. This was all mainly because my father already had a personal attorney who knew him and could get these done for him quickly, and could come to the hospital to get his signature. I know of friends who this situation happened to and their family member remained unconscious. They knew the family member did not want artificial life support or would have chosen hospice, but there were no documentation to that effect so they were stuck. The next year involved looking into his living with this inability to walk well. We spent months cleaning out apartment for home care. We had to put in grab bars in the bathroom, clear hallways, remove slippery throw rugs. We had to safe-proof his apartment. Thank goodness he had two parking, because often there were no available guest parking in his small condo, and it would have taken longer to find street parking and walking to the building at time when we were just dropping food. There was so much coordination involved, It was probably enough for someone to do as a full-time job. At least part-time. This is a common theme in Hawaii where because of the cost of living, people have to go to great lengths to navigate the medical system, then they have to coordinate the lives of another person, their family loved one.
