A week ago today Dad was transferred to R Center, a nursing home that houses 3 units: Rehab, Dementia, and Long Term Care. Dad started out in the Rehab unit, but during our first meeting with the care team we agreed that transferring him to the Dementia unit was a wiser course. He would receive more knowledgeable care, from staff who are trained and experienced in Dementia. Also, there was an available bed, so if we decided to keep Dad at R Center after rehab ended, we wouldn't have to wait for another availability while paying the much higher rate of living in in the rehab unit. Presently he is still on the rehab program, he is just living in the dementia unit.
We thought this would be a great move for Dad. Unfortunately we failed to look at it from his point of view. In 2 weeks he has been moved 3 times. For someone with severe Dementia this can be extremely disorienting and frightening. I am sure that by yesterday morning he was thinking, "where the hell am I NOW and who are all these people coming at me??" Tuesday was his final move, and the last two days have been rocky. He apparently did not sleep at all the first night, and kept his roommate up with his yelling. The next day the staff had a heck of a time getting him out of bed and into a wheelchair because he kept trying to kick them. I spoke with the NP from Generations, the neurology office that monitors Dad's mental state and 3 of his meds. She is not the one who we've worked with at the office, but the one who is on site at several dementia units in the area. What she had to say was sobering, as if we were not already aware of Dad's grim current state. Dad is now classified as aggressive. In his current state he is not that safe to care for. At her recommendation we agreed to let her prescribe two low scheduled doses of Trazedone, the anti-anxiety sleep med he is already taking at night, during the day, as well as a 3rd dose as needed. She told me that often when a UTI brings about a behavioral change, that change can last a week or more after the infection is supposedly gone. She is hopeful that the daily doses of meds will help ease his anxiety. If it doesn't, then we will have to talk about anti-psychotic meds. She also told me not to hope that he will go back to his state before the big decline following respite. While he COULD return to that state, in her experience with dementia patients, that often doesn't happen, the decline simply continues.
This has been, as one can imagine, a really rough week for Mom. Dad has become a completely different person. He even gets mad at her, or doesn't respond the way he used to. She has expressed that just watching him is enough to bring on tears, because the change is so stark and she has no explanation. At the same time, we are seeing the same lack of attention to detail in this facility. Nothing egregious, actually the nurses are really on top of things, particularly the night nurse. The PT is awesome, and not intimidated by Dad's yelling. But sometimes little things fall through the cracks. This morning for example, Mom found Dad's cpap mask on the floor, and one of the nose valves was missing. She eventually found it under his bed. When she told me I thought, "Do we now have to spell out precisely where to safely put his mask so it doesn't fall on the floor?" Things like that. I could add this to his care plan, and will, but trying to think of the 101 things they need to pay attention to is almost as tiring as having to do it ourselves. After telling me about his cpap mask Mom said, "I think in nursing homes they take care of you on a basic level, but they don't treat you like a real person." I asked her if she wanted to look for another place, but she said, "I think it doesn't make a difference, it's going to be like that anywhere, we just have to be precise about what we ask them to do." She vacillates between regrets over taking him away from CA, where he had a social and spiritual community, and being thankful to be here, where there are tons of resources, and a new community that has a lot of experience with dementia, new supports, new friends.
I think Mom needs counseling. She has so many emotions surrounding the gradual loss of Dad, the care he is receiving, while simultaneously being aware she and we are unable to care for him properly at home. There have been days when I look at Dad's room at home and wonder if we should just bring him back. But then I remember the insanity of the last month, with all the doctors appointments we could barely get him to, the home health aides that were mostly good, sometimes not, and the way everyone's lives were revolving more and more around what kind of day Dad was having. At R Center everything has become streamlined. If we ever have a question or see a problem that is of a medical nature, we don't call any of Dad's doctors anymore. We simply talk to the nurse, and she takes care of it. Yesterday the aides noticed that the pee in Dad's catheter bag was red, perhaps a sign of blood. The nurse talked to Mom about it, but also called me. She let me know they were going to have it tested. They also called his urologist and moved his followup appointment a few days earlier. On the day of the appointment they will arrange for transport. This is the way things will happen now. This is what Medicare and insurance, and eventually we, will be paying for. If Dad is having a particularly bad day and just being impossible, Mom has the freedom to walk away, come home and regroup, because she knows Dad is at least safe where he is. Yet all the time I think she is thinking, "this is not what I wanted for him."
I recently joined an FB page on a book about Dementia. The subscribers seem to be all present or past caregivers of people with Dementia. All of these people care for their loved ones at home. One day I asked them why they decided to do this rather than let them go to a care facility. ONE family (who also was the only one with children in the home) cited financial constraints. The remainder said their loved ones had expressed the wish to die at home, the owner of the page and others said they knew they could give their loved ones the best care, better than a care facility. I read the book by the owner of the page, and it was a 24/7/365 deal that went on for 6 years. And I realized that sometimes a lot of what drives decisions depends not only on our convictions but our circumstances. I began to see that imperfect though the details of Dad's care may be at R Center, we were no longer able to give him the best care at home. Maybe, with a shift in perspective, we can give him the best care by partnering with R Center. Maybe, by working together with them, we can give Dad the end he deserves.
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