The Dementia Whisperer
The Dementia Whisperer
Dr. Fehlauer has been Beverly’s physician since she first entered the facility. He has a very strong positive reputation in many places. (We will get to the “whisperer” part later.) The issue of finding the right physician is not easy. While we were still living together, we saw a Geriatrician and a Psychiatrist (Gerontological) for many months. And a Clinical Psychologist together to talk about the depression, anxiety, and other troubled states of mind for us both as we struggled with the diagnosis and the slowly worsening dementia. These were all great relationships with competent professionals. But this all changed when she entered a facility (see the first blog “From Eternity to Here”). And, I must say, we did not know how to pick the right physician then. But we entered this specific facility based on strong recommendations from two good sources who knew Dr. Fehlauer.
We entered this facility July, 2017. Dr. F. immediately interviewed us both; Beverly’s prominent issue (besides the dementia itself) was the accompanying anxiety/depression and bouts of unprovoked anger. In his meeting with me, his discussion was straightforward about managing these “side effects” of Alzheimer’s. And he said that he would use various drugs for calming, but “I don’t want to change her personality.” It still brings tears to think about that simple statement; not changing her personality was certainly what Beverly & I both wanted. He also was willing to try one of the current Alzheimer’s drugs, suggesting that it might improve her functioning. Later the Alzheimer’s drug seemed to have no effect and was discontinued. His drug regimen for the other issue has been consistently effective; note that this is not a one-time fix as the drug regimen has needed changing many times. But she was soon much improved and remains so, considering the continuing decline from the Alzheimer’s. And the personality has not changed.
There are many other medical issues that Dr. F. managed for us, most of which were discussed in previous blogs. Nearly two years ago there was a serious fall with some bleeding in the brain. That seems the most complicated, though the pulmonary embolism was very serious too. There have been other falls (maybe only two), UTIs many times, bowel issues,, and eating/swallowing issues more recently. And several seizures. Increasing weakness has her confined now to a wheelchair, which is not good but at least greatly reduces the chances of falling again and possible attendant injuries.
As to the serious fall, it was apparently caused by a seizure, which resulted in anti-seizure medication on a continuing basis. In some periods, that medication did affect her personality simply by making her semi-conscious nearly all of her waking time. That engaged Dr. F. and me in several rounds of discussing how much to cut back the standard dose, preventing a seizure and maintaining an alert personality at the same time. In one round, she was doing great until she had another seizure—minor and on her bed. So he reinstated full dosage again for a while, then after further discussion with him, the medication was reduced a little, which resulted in reasonable functionality. I review this mostly to raise the issue of how collaborative Dr. F. has been about addressing the variety of needs. He was always willing to have those discussions with consideration of my concerns. Dr. F. listens carefully and his responses show how effectively he attends. He is truly a partner in these difficult times, a physician who knows medicine and understands the broader issues.
And through all of these times, he has demonstrated his skill with the range of medical difficulties she has had. He has the engagement and involvement to use what is happening with her to apply his broad medical knowledge to a variety of health problems. The blood clot on her lung was quickly diagnosed and effectively treated. And, of course, I was always informed and consulted.
One of his special talents is sitting down with the dementia patient and having a serious talk about how they are doing. I saw this several times with Beverly without quite knowing what he was doing. I learned later how important and effective he can gain information from the patient (the dementia whisperer) to manage the medical issues, as discussed below.
His primary focus has always been on what is best for Beverly. He was very knowledgeable about her Medical Advance Directive and Physician Orders for Life Sustaining Treatment (POLST), both of which were made when she was capable of those decisions. During one of those difficult times, I was out of town visiting our daughter so he read me passages from the Advance Directive over the phone so we could discuss what she would want. The issue of “quality of life” is what I want to discuss with her physician. It seems easy to agree that a UTI should be treated with antibiotics. And, it seems easy enough (after thinking about it) to agree that brain surgery after her fall would not be a component of treatment. And, of course, quality of life entered strongly into the balance in the amount of the anti-seizure drug, avoiding another seizure and, at the same time, having her conscious and engaged.
And straightforward honesty is great for me. When the pulmonary embolism was diagnosed, it was clear that she was not doing well. And I know that the clot could move and might move to the heart or the brain. Dr. F. told me that he thought she had a 50-50 chance of surviving this. She survived, but it was important to be prepared for something worse.
The kindness and sense of humor was always there, too. In the midst of the embolism issue, two different Nurse friends gave me questions to ask Dr. F. about the details of the treatment. I told him that these questions came from Nurse friends. He answered the questions and then said, “Listen, if we didn’t address Nurse questions, there would be a lot more dead people.”
To broaden the perspective beyond my direct experience with Dr. F.’s treatment of Beverly, I interviewed several of the professional staff. I asked these particular ones, as they worked directly with him and I knew them well enough that I thought they would talk with me honestly. Two of them were Nurses and the other worked in Hospice.
The “whisperer” term came from one of these. This refers to his style of interaction with dementia patients; he really has a conversation with the patient about how they are doing, about what is bothersome and what is happy for them. Every staff member I interviewed discussed the matter of how he can talk to patients. Because of such a conversation, he is able to know better how to address the issues faced by this patient, even though most of them cannot communicate effectively with anyone. One Nurse called this a “magical presence” with patients. The Hospice person describes his style as “…comfortably and beautifully connecting to his patients and their families.” And that he helps the patient find joy in life in the face of this difficult disease.
Consistent with my experience, one of them described his work as keeping the individual’s personality intact and not overmedicating them. This description is: “He sees the beauty in each of his patients and allows them to shine.” One of the Nurses made a similar point, to the effect that he deals with their personality, while some physicians tend to “obliterate their function.” All of those interviewed made the same point: Dr. F. works very cautiously with medications, so as to keep the patient’s best function. And the Hospice person emphasized the extent to which he considers interventions to manage behavioral problems without medication.
The Nurses both appreciated him to a great extent. He works with the Nurses, engages them, and attends to what they have to say. Both Nurses said that he was the “favorite” or the “best” doctor they had ever worked with. And he is considerate when they need to call him at 3 AM. Finally, they both felt that he is an incredible diagnostician. These reports are based on their long-term experience.
Finally, from Hospice was the report that a family member had expressed great appreciation for his skill and involvement, that Dr. F. had “changed their lives for the better.” There are so many of us who are extremely grateful for his expertise, his intellect, his understanding, and his compassion. The “dementia whisperer” is magical in his knowledge and his involvement with patients and families, and with those who attend to our loved ones.
We appreciate our “dementia whisperer.”