Today Dad has been back at R Center for a little over a week. The care team at the GPU determined that he was stable enough to be released. At our last meeting both the social worker and palliative care doc encouraged us to enter Dad in hospice, on the grounds that 1) he surely qualified, and 2) he would get a lot more personalized care. So as soon as Dad was settled in, we contacted two local hospice agencies. Both came recommended to us, and the head nurse of the dementia unit where Dad is living told me she had experiences with both, knew how to work with them, and would surely let me know if they were not doing their job. We had an admission interview and assessment with both agencies, decided on one, and Hospice began Friday morning.
The way Hospice works is, the patient has a team consisting of a visiting nurse (RN), a nurse's aide (LNA), social worker, chaplain, and volunteers. The RN will visit Dad twice a week to check on his condition, make sure he is not experiencing discomfort, and to take measures if he is. The LNA will come 5 mornings a week to administer care. In Dad's case she will get him washed up, dressed, and ready for the day, feed him breakfast if she can. The social worker comes once a week or every other week, the chaplain the same. The volunteer will come a few times each week to hang out with Dad, do things with him that he is interested in, which might mean reading to him, listening to music, or just sitting. I'm not sure what happens during that time as a patient will dementia continues to fail, but they are there. All members of the team will report to us how their visit went, and to the nurse if they notice anything new. If at any time we ourselves notice a problem, we should call the RN and they will take care of it. As things start changing and Dad gets closer to the end, the visits will increase in frequency as needed. After he passes, the chaplain will continue to follow up with us for (I think) a year.
In addition, Dad got some new equipment. He has some kind of air mattress that is much more comfortable for someone who is bedbound, as well as a reclining wheelchair that helps prevent bedsores.
Ironically, since Dad has settled in at R Center and Hospice has begun, he has suddenly gotten a second wind! He seems very happy to see Mom and me when we visit, and is suddenly trying to become more mobile. One day the nurse came into his room and found him standing up, trying to open one of his dresser drawers. As a result he is now on a new status, which means they are using a two person assist for toileting instead of the hoyer lift, which he much prefers. Also, when he is sitting in the chair, he is in the hallway instead of his room. I used to wonder why people in chairs were sitting in the hallway, but it's so they are always within sight of staff, in case they suddenly try to get up. Of course, after a couple of days of being frisky and chatty, Dad will suddenly have a day where he naps practically the entire day. But Mom has been wheeling him outside into a park like area across the parking lot, and he loves that. One day when she wheeled him out there he looked around and said, "Oh this is nice, just the two of us." His appetite seems to have returned as well. Since entering R Center, he has gained 3 lbs in about a week's time. This seems like a strange state of affairs for someone on Hospice, but I have read and have been told that many people on Hospice end up living longer than initially projected.
The only thing that makes Mom sad is that Dad will occasionally ask if he can go home. A fair question, since he seems to be doing so well. She can only tell him, "No you need to stay here where so many people can take care of you." I have guilt feelings because I know were it not for the kids, she would try to bring him home. And it would almost seem feasible, just three adults caring for him. I don't think she is resentful, it's just the way things are. On the other hand, I feel like her being home with the kids gives her a daily dose of normal life. If Dad were home her days and evenings would be consumed with taking care of Dad, just because she wouldn't be able to stop herself. The way things are now, she can go twice a day and feed him dinner, something they both enjoy, hang out for a while, and let the staff do all the heavy work. The last few days she would come home and tell me about some hilarious thing Dad said, like the other day when he asked her if she was married! Even when she remembers that she bursts again into laughter. She is honestly not sad about that, because, "I know this just happens."
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