Part 1 yesterday and Part 2 today.
When mentoring a PWD, I like to share with them an acrostic that I think is helpful in achieving better outcomes in the early and mid-states of dementia. The acrostic is "ASAP" squared. "As soon as possible, ACCEPT the diagnosis. This does NOT mean passively accepting the diagnosis. At the time of my diagnosis, I told my wife that "it is what it is and everything will be okay", ten minutes after my diagnosis. I was able to do this because, I had seen eight physicians in fifteen months without an accurate foundational diagnosis. I had received four other individual diagnoses and no one was collectively finding the ultimate carrot. After visiting a memory and cognitive center at a major teaching facility, I was able to receive my diagnosis of LBD. Three months later, I felt as if I was a convicted murderer. The physician had issued the charges and the jury had found me guilty. The judge had issued the death sentence without appeal. At this point, I had TOTAL ACCEPTANCE of my diagnosis and the long term implications. Over the past two years, other physicians have had difficulty acknowledging that my diagnosis at the memory and cognitive center center was correct. In fact, one physician emailed my neurologist about two months ago and expressed that he did not see LBD as being present. My neurologist responded to him by saying that everything taking place leads him to my diagnosis of LBD. When this occurs, it creates an emotional roller coaster for the patient.
Maintaining equal or greater SOCIALIZATION is essential. Finding purpose in life after diagnosis has enhanced my quality of life since diagnosis. Memory cafes, both in-person and virtually through Dementia Mentors, can have a huge impact on improving one's overall sense of well-being.
ATTITUDE is huge. Each of us have a choice when a diagnosis of dementia is given. We can bury our heads in the sand and drown with emotional distress and depression, or, we can have a positive attitude and minimal, if any negativity. A positive attitude for me has proven to be a catalyst for me enhancing my overall quality of life. I rarely think of anything negative. If something comes into my mind that is negative, I choose to quickly remove it.
All of us need PURPOSE in life. We need to establish what our purpose in life is after diagnosis. For me, it was the same purpose that I had when practicing pharmacy, helping others in a health-related manner. Others might have a purpose that is different than their purpose prior to diagnosis.
I shared in an earlier blog that I would offer my thoughts as to how the best outcomes can be achieved and the lives of all parties made better. I feel that "ASAP" squared can be utilized for care partners just like the PWD. Often, I see care partners appear to not have come to a COMPLETE acceptance of the diagnosis and the long-term implications of the diagnosis. With all of the demands that are placed upon the care partner, they tend to neglect themselves because of the love that they have for their loved one. When this occurs, there is a likelihood that depression will follow and a decrease in overall sense of well-being will occur. With so much stress from being a care partner, it is difficult to maintain a positive attitude. Time constraints placed on a care partner makes it difficult to find purpose in life other than carrying for their loved one.
WOW! All of that is enough for ANYONE to throw up their hands and feel like screaming, crying, running and giving up. There appears to be nowhere to turn. My suggestion for care partners is that they follow the acrostic "ASAP" squared. I believe that when this is applied to their lives, the lives of both the PWD and the care partners will be better. Hopefully, some will be wiling to try this and give me some feedback. There is a lot that I do not know, and I continue to search for better methods of understanding and application for both the PWD and the care partners. Working together, we can ALL make a difference and have a dementia friendly world.
I believe that when the PWD and the care partners interact and learn from each other, there will be better outcomes. The care partners must be willing to listen to the PWD share what is taking place in their lives. Now, the care partners have to differentiate between the different perspectives of the two parties; however, the best results will most likely occur when the perspective of the PWD is primary. Unless the PWD dementia is at risk for their own health and well-being, better outcomes will most likely be achieved by seriously considering what they are expressing.
After this occurs, care partners need to be sure that they understand what has taken place. If the care partner does not feel that they understand, most likely further discussion will help. After understanding is achieved, the care partner will need to accept the changes that might need to take place in the care of their loved one, if they are appropriate. No one will ever win an argument with a person with dementia. The PWD cannot be fixed or argued with. Their perspective is simply their perspective. Fortunately for me and my wife, I have been able to accept the differences all but twice. On both of these occasions, I was able to say okay after the second time. If there was continued attempts to change my perception, I would most likely become agitated and be erratic in my behavior. Medication, most likely, would NOT be necessary, unless continuous efforts of attempting to change my perception took place. After accepting the changes, implementation must take place on the part of the care partners. Consistency is very important. When all of this occurs, I feel that better outcomes will most likely be achieved.
Certainly, it will not always work; however, I suspect that it will work most of the time. There will always be times when medication is the most appropriate response; however, it should be as a last solution. I pray that everyone will have more peace in their life through this difficult and often horrific journey.
©2015 Robert Bowles
Robert Bowles, Jr.