The spiritual concern for most families is crisis. Their sense of crisis may be characterized by the following:
§Anxiety/anger at the disease process: Many families are overwhelmed by anxiety due to the issues of engaging hospice including the following:
§Signing of the Do Not Resuscitate Order (not mandatory).
§Deciding to remove a breathing tube. There is not any event in the decision-making process at end-of-life that evokes more anxiety than the decision to remove a ventilator or breathing tube. Family members often believe that if they decide to remove the ventilator they are killing their loved one. The Chaplain must use his/her pastoral care skills with great precision in assisting a family at this point. What the family does not need is the Chaplain to do a lot of talking, but, instead, the Chaplain needs to listen and reflect what is being said which helps clarify for the family what it is they are feeling. Extubations may take place in the following venues: a hospital or a hospice house. The family may or may not be present when the tube is removed. There may be a physician (usually an experienced hospice physician will remove the tube in a hospice house and will use great care and communication skills as he/she proceeds with the extubation) or a respiratory therapist conducting the procedure. The Chaplain is present with the family to listen to their concerns. Her experience with this procedure will be used to provide comfort, support, and understanding for the family. The Chaplain’s peaceful demeanor will be of great comfort to the family. Two actions the Chaplain will take will make the family’s anxiety abate a good deal: first, the Chaplain informs the family in response to their questions about the procedure; Secondly, the Chaplain will be with the family during the procedure. It is at this point that silence is in order as the family will need to focus on their loved one. Speak when spoken to is the watchword and speak sparingly is the wisdom at this time in the procedure.
§Deciding to withdraw or withhold food and water. The Chaplain’s expertise at providing not only spiritual/pastoral care, but correct information is at stake at this juncture. The family needs support and information. While the Chaplain is not the sole source of information regarding this medical matter, the Chaplain is knowledgeable about the issue. Because food and water are symbols of love and care, this issue is significant for families. It is suggested that the Chaplain identify the feelings family members are expressing and provide support. The Chaplain becomes an educator to explain other ways the family may show love and care. Reviewing characteristics of natural death may help: loss of appetite, decreased fluid intake, the body’s desire to cease living. Providing artificial food and hydration may make the dying process complicated by inducing breathlessness, ascites, nausea and vomiting, and edema. This is where a family must review their desires and wishes to best provide for their loved one. Certainly, this is difficult for the family, but death is a natural and normal part of life. The Chaplain compassionately reinforces this reality.
§Deciding on a surrogate to fill the void of decision-making in the dementia patient or non-responsive patient
§Making funeral plans.
§Surrendering what appears to be autonomy in choosing medical interventions.
§Observing their loved one decline throughout the disease process. Yet others present with anger regarding what the disease has done and is doing to their loved one. That anger may be directed at God or an institution (hospital, nursing home, even hospice), or it can be felt deeply inside, but not outwardly identified. This can burn a hole in one’s soul, not to mention, one’s stomach lining.
§Shame and ridicule by others. This may sound odd, but in some cases family caregivers are recipients of emotional and verbal abuse from their loved-one patient. Anecdotal evidence of this serves as a clear explanation:
The constant battle with my husband, Barry, these last ten years has hardened my soul. It is difficult enough being a Family Caregiver but to have to care for someone who is constantly combative and abusive can wear you down after a while.
Barry, who was always a quiet guy before his stroke ten years ago, has turned into a mean person who will verbally demean and push buttons to create arguments, leaving me feeling devastated and emotionally depleted. Some days I worry about my health, feeling heart pain and dizzy spells; concerned about strokes. (Update: had a mild stroke early April, life goes on.)
Barry suffers from brain damage caused by two strokes which has developed trauma induced narcissistic personality disorder. So no matter how corrosive Barry can be, he is not fully responsible for his behavior.
The battering cycle will start with Barry verbally demeaning me, and then I will pull away from the hurt to regain my balance. Barry becomes Mr. Nice Guy for a little while to regain my trust and then verbally batters me all over again. A very vicious cycle, where I must remain understanding and strong; but I am only human.
Barry knows his behavior towards me is wrong and will only mistreat me when we are alone. On a few occasions, when Barry thought we were alone, has a family member witnessed Barry’s treatment towards me. A small victory for me knowing someone else now understands Barry’s behavior towards me.
At one time, I even had to consider when Barry’s body was resuscitated back from the dead, Barry’s spirit had passed over to the other side, only to have an earth bound evil, malicious spirit enter his body. I must consider all possible options to this demise, as I shelve the thought to the back of my mind as a possible factor for Barry’s meanness.
On occasion, I have broken down and become absolutely enraged from Barry’s constant verbal abuse; having reached my limit, which unfortunately this is exactly what Barry wants – to push me over the edge, to see me lose it, so Barry can now take my anger and use it against me. I am made to look and feel like the bad person and he is the victim.
When Barry passes away, not only will I have to grieve for his death, but also grieve for the entire trauma I have had to endure caring for him all these years. The only way I am surviving this, is that I have become a hard boiled egg – my shell may be broken but I still have a lot of bounce inside.
If Barry was institutionalized in long term care, the medical staff would find his behavior abusive and even disruptive, resulting in Barry being sedated. No matter how abusive Barry becomes I would not want him sedated, so I keep searching for alternative solutions. Family Caregiver H.U.G.S.: CAREGIVER HELP: Stress, Abuse and Bullying: The Caregiver’s Shame, August 8, 2013
(Continued in Part 4)