Emergency Respite Care

Hello! I’ve been a longtime member here but haven’t checked in for several months. I wanted to share my recent experience with my own emergency situation and what happened with DH. Although he was diagnosed in 2013, he’s been declining very quickly during the past year and a half. He’s probably very late stage 6. He requires assistance with all ADL’s except he can still feed himself (barely). I’m DH’s sole caregiver but he does have a home health aide 26 hrs per week. We have a large blended family of adult children but none of them live near us and are busy with jobs and kids. In late October I fell at home and suffered a severely fractured ankle and dislocation, along with a minor head injury. While laying on the floor, it took some time and direction for DH to hand me my phone laying inches away. I called 911 and the EMTs allowed DH to ride in the ambulance when I explained his situation. I also called his daughter and she and her husband dropped everything and rushed to the ER to retrieve DH (after some travel time). They were able to spend the first night with him at our home while we figured out next steps. It was sort of a fiasco but we pieced together a team of family members taking turns to stay while I had surgery and spent the following 5 days in the hospital. Two of my daughters who are out-of-state took off work to take turns staying. That may have been a slight blessing because they all mentioned having a better understanding of what I go through with DH. Once I came home and had to resume DH’s care outside of his aide’s hours, I found it extremely difficult to care for him from a wheelchair and in pain. His nurse with his VA home-based care program urged me to take advantage of his allotted 30 annual days of respite care in a memory care facility (at $0 for us). I didn’t know that existed but I turned it down at first because I assumed that he would be very angry being there and not understand that it’s temporary. But after 3 days of my struggles, and him getting up 4 times during the night, I called his nurse and said “please come get him!!!!” After he left, I was home totally alone, wheelchair bound, and unable to visit or talk to DH. I worried about what he must be thinking. But I did call the nurses’ station 3 times per week for updates. I was shocked at the good reports. Apparently he was enjoying the socializing, most activities, and all the new attention. He’s been back home for a week now and doesn’t recall being there. My daughter who has been a Memory Care Director in another state warned me that the two transitions he had to make within a short period of time may result in a further decline. She’s right, it did somewhat. But I adjusted his schedule to mirror his time in memory care and that seemed to help. I’m still recovering from my injury and have limitations, but we are getting by now. My purpose in sharing this long story is to show why caregivers must have a back-up plan in the event something happens to the caregiver. I didn’t have a back-up plan. I’m 16 yrs younger than DH and foolishly assumed nothing would happen to me. But working with family, we’ve devised such a plan just in case there’s a “next time”. Also, I need to buy an Apple watch so I have it on me at all times since DH wasn’t great help with getting my phone to me.