Our loved one is losing his battle to remain connected to this world. There are no words to express our pain as we sit by his side almost able to see his life force slipping from his physical form. We have reached the point where Hospice is now assisting in his care,and excruciating decisions must be made on a day-to-day basis. I find myself consumed with anger not because I cannot accept his death, but by the way decisions about his life are being made.
I fully understand that he is entering the dying process, but I also know that we have not reached the actual final stage. I am enraged because his wife, and his stepdaughter have seemingly joined ranks with “Nurse Doom And Gloom” deeming that since he is not living in a manner that they feel to be of quality that we should start infusing him with morphine. He was experiencing some congestion (many people in his facility have the flu including his roommate) so the “Doom and Gloomers” without any other evaluation of his vitals proclaim he has a death rattle. My step mother-in-law tells me that he is beginning to aspirate and that we have one hour to decide about turning off his feeding tube!
My daughter and I both having a great deal of palliative care experience automatically begin to question what changes in his vitals have led to this decision. Meanwhile my husband is devastated by the very thought of facing this decision calls his siblings with this news. My daughter and I press further bring in another nurse who doesn’t deal with my loved one to get an unbiased opinion. Like us this nurse feels he has a cold,and that we should try to lower his food intake allowing more hydration to see if this will alleviate his congestion. My daughter and I try to explain this to our in-laws. Without even listening to what we have to say they insist on taking the other “Doom and Gloomers” suggestion, completely ignoring that other than a slight fever his vitals have not changed!
My step sister-in-law who granted had one months experience with Hospice and her mother-in-law (who was alert and able to make her own end of life decisions) believes she knows much more regarding these matters than my daughter and I who have worked in the nursing field for the past nine years. She continuously brings up her knowledge of these matters (She has worked in advertising for the past 25 years) adamantly refusing to hear our opinions backing her Mother’s wishes to accept that he is aspirating insisting that we contact his biological children, and get them here immediately. Now bewildered at the intense refusal to hear us out we approach my husband who listens to our suggestion and helps us insist that we try this first before turning off his Father’s feeding tube.
You can imagine the emotional toll this is taking on my husband who deeply loves his father. I further insist until they finally relent, and agree to give this a try. Now my daughter and I are stunned that we even had to fight them to even consider questioning such an important decision. It’s been three long years of complete caring, going to his facility every single day with facing some extreme medical issues along the way. We are all exhausted but he is still very much fighting to hold on to his life! My step mother-in-law has been living with my stepsister-in-law ever since this all began three years ago. She is capable of living alone but is afraid to be alone. My husband and our children have taken care of his father on a daily basis for three years. Daily visits, bathing, laundry, and emotional support. His wife comes but rarely stays longer than a half an hour, her daughter visits our Dad about twice a month and during hospital stays. I spend a minimum of two hours a day with my loved one so we are much more aware of his demeanor but this fact is being dismissed.
I am beyond angry because we have been made to believe that we would all be making (have been making) decisions together along this journey. The truth is that we are only jointly a team as long as we are in agreement with how they would like matters to be decided… 😉