This Is My “Now”

Some days dealing with dementia patients can be either challenging yet rewarding, or downright difficult. I often tell family members to “stay in the moment” with their loved one, focusing on the topic regardless of how outlandish or far-fetched as it may seem. It seems to me that most dementia residents  focus on ” going home”, when they last ate (3 days is the standard comment ), “taking care of the babies” and going to the bus stop.  I encourage staff and family to use Naomi Feil’s validation methods of reassuring the resident that all is okay, and validating what they are saying.  Arguing with a dementia patient is truly a moot point.  I highly recommend reading some of the research on the Feil Method and applying  it when dealing with dementia patients. For more information ,  go to the website :   https://vfvalidation.org/  .

I made a huge mistake last week, using the validation method…..let me explain.

Sarah is a new resident, but does not have dementia.She has terminal brain cancer. The progression of the disease process has taken from her the ability to communicate effectively; often losing the word she meant to say before it is verbalized. She may mean to say, “ I need to go to the bathroom” but it comes out ” I need red elephants.”      So to provide care to her, the staff have to use the process of elimination  : “Do you need a drink?  Do you need your pain pills? Do you need to go to the bathroom?”    Once the need has been identified, it is met …it just may take a few minutes to arrive at the right answer.    It can be a frustrating process for her and for those providing care.

Here is the thing.          Sarah at times, can speak clearly, with intent and purpose, saying exactly what she means to say. Her move to the facility was not a very happy moment for her and she had no problem expressing her dislike for being here or for those of us who helped with the process.  She had no trouble finding choice words to describe exactly how she felt about being in a place with a bunch of  “old people”. ( Sarah is only 59 years old.). She was extremely critical of every component of the facility. The building was not clean enough; the food was horrible; the staff was stupid, stupid stupid and the old people were OLD.   Her list of reasons not to stay in such a place would take days for me to transcribe or even begin explaining.   After about an hour of  listening to her and knowing that she had some neurological deficits, I contributed her complaints to the brain tumor as opposed to her true feelings.

” Sarah, I understand what you are saying and I am going to have someone come in and clean your room again and have the kitchen send you up something else to eat. I personally will see to your needs and try to make you feel comfortable as we can. It is going to be okay  Sarah, everything is going to be okay.”    

Without blinking an eye, Sarah stood up, looked me directly in the eye and said ” I call bull sh**.  How in the hell is everything okay when I am dying of brain cancer and you, YOU, don’t understand anything about me. You wrote up some papers, my family signed them and here I am in this place to die with a bunch of strangers and you tell me everything is okay? Bullsh**.  Why don’t you try living my life and see how you like it? Before this happened, I had my own life and didn’t bother anybody and now I am in this hell-hole waiting to die and you tell me  it’s okay. You know what? This is my NOW and I hate it and I hate you.   Now go get me my zebras because you have made my friggin head pound. I have brain cancer you know, so do you think I can get some relief ? Get out of my room.”                                         Talk about being put in my place.

My interaction with Sarah has made me think about how we interact with dementia patients over-all and how we respond to them.  When someone is looking for their wife of 60 years and we know she has passed away, we offer an excuse to the resident. ” Oh she is at the beauty parlor”, which in turn, calms the resident and redirects his thoughts from searching for her.  But what if, just what if he wanted to talk about his wife and grieve his loss? What if he already knows, deep inside, that she has died and is simply wanting to recount a memory about her?     Sometimes it is difficult to discern what the underlying meaning is when spoken by a person who has cognitive deficits.  Trying to figure out what is being said, is what is meant and is what is inferred and implied, is as confusing as this sentence is!

I learned a lot from Sarah during  that single interaction. I now know that everything is not going to be okay, just because I said so.    Human beings whether cognitively impaired or not, still have emotional outpourings that are real, not imagined, nor a figment of their imaginations.   Their ” now” should not dismiss who they were, how the feel or have felt, or what they are saying to us and wish to have understood.

Think about it, right now where you are. How will your ” now” moment be interpreted should you one day lose the ability to express yourself verbally?     WordOfTheYearNOW

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One thought on “This Is My “Now”

  1. I couldn’t imagine the frustration, but I believe your written explanation goes a long way to help us all understand. I know this much: I can sympathize with your resident in that there are days that I am in a deep emotionally depressed state of mind. It gets kind of overwhelming to a point that I cannot even begin to adequately express with words. I truly wish I could convey to others what is happening within me so that I would not get the “everything is going to be alright” speech because it surely does not feel so in the moment and hearing that makes it worse because it fosters the feeling of abnormality on top of the depression, making it worse in a downward spiral pattern. True depression does not just go away. No magic words can make it all better. I imagine that is what your resident and many others like her are going through. I also sympathize with you, my friend. Discernment is crucial. All I can say, coming from a Biblical stand point, is that prayer always helps. Perhaps, allowing more of the movement of the Holy Spirit into the workplace will bring the needed words when the methods of man fall short? Either way it’s cut, I surely do not envy your place, nor your responsibility. I pray that God continues to strengthen you where you are and that you are used to both comfort those under your care and to glorify His Name in the process. God bless you, Jessi.

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