Today, one week after Dad was admitted to the GPU (Geropsychiatric Unit), Mom, Mike and I sat down with Dad's care team. It consisted of his covering neurologist, the social worker, two charge nurses who were caring for Dad today, and the palliative care doc, whom Mike and I met for the first time. The purpose of the meeting was to assess Dad's current condition, discuss any medical findings and recommendations, and decide where we wanted to go from here.
Before the meeting, we went to visit Dad for a few minutes and all of us were astounded by the change in his condition. As recently as two days ago he was extremely defensive, and would not let any staff near him. If any of them even entered his field of vision he would start kicking and swinging his fists. He wailed continually. The only person who could do anything with him was me and Mom, and as of Tuesday he wouldn't let me clean his face, and even gave Mom a hard time when she tried to feed him. Two things in his care changed that day. He was FINALLY put to bed with his CPAP mask that evening (I could write an entire post on the ludicrous process by which the protocols of care must follow). Then yesterday afternoon, the palliative care doc gave him a Fentanyl patch for pain. Today at noon when we went to see him, he smiled as soon as he saw us, nodded and seemed to want to say something. He said, "Michael," when Mom told him Mike was here. When the neurologist came in to get us he greeted Dad, who nodded and said, "Good morning!" then stuck out his hand to shake hands with the neurologist. I could not not believe it. If I hadn't seen it with my own eyes, it wouldn't have been any more astounding.
We opened the meeting by marveling at the change in Dad's behavior. Mom saw the beginnings of it yesterday at dinner. Basically he had become more alert, yet more relaxed, and wanting to engage. Neither of the specialists were willing to commit to a theory as to the cause, though they acknowledged that good sleep and the pain patch were certainly possibilities. The important thing was to keep monitoring Dad and see if this change continues through the weekend.
Palliative care doc did most of the talking. There were a few points that jumped out at me. For one, Dad's urology doc decided not to continue the antibiotics. The reason being they were not convinced Dad had a UTI. Palliative care explained at length about how bacteria colonizing in urine that was in the catheter bag did not mean there was an active infection. There is an official standard called the McGeer scale that is used to determine whether someone has an active UTI, with 5 criteria. The two most important in our minds were 1) elevated white blood cell count, and 2) fever. Dad had neither. For this reason they decided using a very harsh antibiotic (Cipro) on Dad on the possibility of an infection was not in his best interests.
From there the discussion turned to the goals of palliative care. Also called comfort care, they include comfort, joy, and dignity for the patient. Palliative care is often used in conjunction but not exclusively, with hospice care. A person can be on palliative care without being on hospice care. In the pursuit of these goals there are many areas of the patient's care that are evaluated on the measure of whether they really contribute to a patient's comfort, joy, and dignity. A very simple example would be Dad's meds and vitamin supplements. For a person with Dad's life expectancy, vitamin supplements are pretty much irrelevant. The same could be said of his BP meds. However, the administering of these meds to a patient with late stage dementia can be considered instigatory (never knew this was a word before today). Instigatory means trying to get the patient to do something can instigate an episode of agitation. So the question becomes, is it really worth giving these meds, when at this point they have little value, AND it makes him agitated? Perhaps then, we can consider taking these things off his list of things we must do with him. There are many things in a daily routine that can be considered instigatory in the mind of a dementia patient. By decreasing that list of things as much as possible, we go a long way towards keeping the patient relaxed and comfortable.
Palliative care doc was very affirming of Mom's desire to feed Dad his meals, to brush and floss his teeth, and clean him up each day, since it clearly gave them both enjoyment. At the same time he wanted Mom to understand that even now his appetite for food and drink were waning (we've already seen this), and would continue to diminish as the dementia progressed. The same would be true for all of his desires. At no time should she feel as though if she had only done things a certain way he would've held on longer. Because his disease would continue to progress whether or not he had that extra half cup of pudding, whether or not he got his eyedrops, or even whether or not he ever got out of bed. Apparently it is a very common thing for caregivers to beat themselves up every day over not having done the right things, or done enough, to slow the progression of dementia. The blame lies with dementia, the disease. We care for the patient within the scope of the disease, and every day that scope gets narrower. In the end, it is our loving presence that gives comfort, joy, and dignity to our loved one, not some specific thing that we did correctly or enough times.
I have to say this meeting was invaluable in that it finally gave Mom clarity on what was best for Dad. She would no longer push for rehab, which was not a realistic expectation. Instead we all would focus on making Dad as comfortable and peaceful as possible. We agreed that for now we would focus on palliative care, and this will be the program that follows him when he is stable enough to be discharged. We hope that he is able to return to longterm care at R Center.
In terms of specifics, we have taken Dad off BP meds and vitamins. We are keeping him on his higher dose of thyroid meds because this will help stave off depression. If he remains stable through the weekend, the next step would be to consider taking off his Excelon patch, then later perhaps the Namenda. We did not know until today that the effective life of these meds is only 1.5 years for cognitive retention, and Dad has been on them 2 and 3 years. However, they do sometimes have the side benefit of staving off agitation, so we will have to see.
Mom seems to have received some affirmation for her perspective when she went to see dad after the meeting. She said he told her repeatedly, "I'm 84 years old. This is too much for me." Wow. Mike and I have been wondering what, if anything Dad may have said in the past gave Mom indication of his wishes. It seems that Dad has always felt only God controls our time on earth. It isn't up to us to decide when we go. This is freeing for us, because instead of agonizing over whether we are hastening or prolonging his time, we can simply focus on making sure his remaining time is of comfort, joy, and dignity.
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