Showing posts with label decisions. Show all posts
Showing posts with label decisions. Show all posts

Tuesday, January 4, 2011

Staying After The Stroke

Why do families fall apart after a CVA? Strokes devastate those around them, not just the person suffering from this trauma, but the entire family. Each person plays a role in the dynamics of a family, and when suddenly one member changes, without discussion, warning, or preparation, overwhelming effects occur. In 1994, the US Department of Health and Human Services, as part of the National Health Interview Survey, found a 7.6 increase in the rate of divorce in adults with acquired disabilities. I have seen quite a few marriages and relationships crumble after a stroke. It is hurtful for all involved, makes depression even more likely, and to be honest until faced with the situation we don’t know if our relationships could survive such a drastic change.

Back to my question: why does the breakdown of relationship happen? I have a few speculations. After a stroke the person recovering will be more dependent on caregivers. They will often need assistance with even the basic tasks of living, like getting dressed, feeding themselves, and even once they recover function for these tasks there may be some residual impact, leaving the spouse different in personality. Even when my husband has a cold or the flu, the change in our interactions can be frustrating. The caretaker of our home, the man who is active, full of life and love for his art becomes lethargic, instead of being out on the snow taking photographs, or in his studio painting, he is in his recliner with tissues around, covered in blankets. I can deal, his illness is limited, but if there were no end in sight I imagine it could be quite the scary prospect for a marriage’s future. On another note, emotional support may be altered. The unwavering wife, the rock of the family, now has episodes of uncontrolled crying, and where does that leave her husband who used to lean on her? One of the most crucial aspects of change that contributes to the breakdown of relationship following a stroke is altered communication. Aphasia is very common, and so even the simplest words, phrases can’t be spoken, not to mention the fact that understanding of questions or conversation becomes difficult. Think about trying to talk to your husband, he just keeps repeating the same word, it seems like nonsense, and you can see that he is clearly trying to get a point across. Frustrating, right?

Now the question moves to what do we do with this situation. The problems outlined all contribute to a collapse of the family unit after suffering a stroke. Part of the problem lies on our inability to step out of traditional roles with our loved ones. Recognizing that the essence of the relationship has shifted is essential. Lack of communication can also must be dealt with by reframing, watching for gestures, facial expressions, and body language. The nonverbals will often tell you more than the jumbled words could ever convey, and communication is crucial to allowing parties adjust to a new relationship. The person who had the stroke has changed. Personality, characteristics that often define a person, may no longer apply. If the goal is survival of partnership then the mindset of all parties has to change, and preconceived expectations must be released. The advice I like to give is that a path less traveled has appeared. Do you navigate your way through the changing terrain, the rocks and boulders, to find the beautiful sunset at the peak of the mountain? There is no right answer for dealing with these devastating situations, but I have seen the most amazing couples emerge, maybe a little shaken, but stronger nonetheless, and not regretful for extending their love to encompass a different concept of what marriage can be. Are you a person who has taken on a great challenge such as this? Or do you know someone who has? Let’s talk. How did you/they cope?

Thursday, April 1, 2010

End of Life: So Many Questions

For years I have known the devastation that comes about when making decisions regarding death and planning for end of life care. When do you opt for treatment? When is it time to just live the rest of your life? When do we as clinicians, nurses, doctors, stop fighting to fix the problem, and resolve to lend a hand for finding peace? Throughout personal experience, encounters with families, and interactions with dying patients I have come to realize that there is no consistency in ensuring that a dying person’s wishes are conveyed and carried out. Extreme variability exists in discussions about dying and one’s end of life wishes. Talk about death is complicated, dealing with death is difficult, and when you add in factors such as multiple medical conditions that take away communication, thinking, or weaken the patient to a point of compromise, it becomes essential to start the dialogue long before the disease takes over.


In the last year or so this specific notion of dealing with death has crept into my life time and time again. First in multiple encounters of working with elderly patients with dementia, or some other illness, who did not “have their ducks in a row” so to speak, left families with critical choices on their plate. Many times a person will have laid out the basics, but when critical moments arise it is much more complicated, emotions of family member take over, not wanting to “lose” their loved one, etc. Resuscitate or don’t? Ventilator or none? Feeding tube or pneumonia? So many intricate questions crop up. Also, I have spent time talking with friends and members of my own family who don’t work in the medical field and they have dealt with similar issues. They ask for guidance from medical professionals, but find it lacking. All of these end of life determinations in the midst of an emotionally trying time. Hoping they will know the right thing to do, while keeping with the wishes of their loved one.


Wouldn’t it be nice if we talked about these decisions with the one who really is responsible for making the call long before the time comes?


The following is a guide designed to be used in conjunction with Bill Moyers’ PBS series On Our Own Terms.

http://www.pbs.org/wnet/onourownterms/community/pdf/discussionguide.pdf



Use with the series is beneficial, but the guide alone also serves as an superb resource for topics of conversation, decisions to be considered, suggestions for dealing with death, and even how to make sure our needs are thoroughly document so no confusion arises.


Initiate the conversations and listen intently. Learn how your parents, grandparents, spouses, and patients what to live out their last months and days, and how they want to die. In spite of a distressful event, you won’t be sorry.