Ours is not the only family to find it difficult to navigate the end of life journey of a family member. A friend of mine tells the story of her own family’s response to her grandmother dying. Her 93 year-old grandmother was taken to the hospital because her body appeared to be shutting down. After a thorough examination, it was discovered that she had a blockage in her intestines. The surgeon was quick to declare that he could repair the blockage by removing a small section of her intestines.
The immediate response of the family was to allow the surgery with only one daughter, asking about mom’s quality of life after the surgery. The surgeon’s response was that he could not speak to that but he knew he could repair the blocked intestine. When the daughter asked again about the wisdom of operating on a fully demented 93 year-old whose body was failing, she was met with the highly emotional comment from a sibling that “we must give Mom a chance.” Everyone was silenced fearing they would be viewed as turning their back on Mom.
After the surgery, the surgeon announced that the blockage was more severe than originally believed and he had to perform a colostomy. The family was stunned. Their mom/grandmother was living with one of her daughters who was barely managing as mom’s full time caregiver. How was she going to handling this additional physical reality? If mom needed more care, how were they going to pay for it?
Sadly, my friend’s grandmother died three days later never regaining consciousness. The family’s last days with their beloved mother and grandmother were spent in the artificial environment of a hospital with her tethered to beeping and flashing machines on a time schedule dictated by the nursing staff.
We have worked from the beginning to avoid this scenario with our mom. We have diligently tried to educate ourselves about the medical alternative presented to us and to learn about the intricacies of health insurance. We had discussions with mom about her end of life wishes. We updated DNR’s and living wills. We worked to be prepared. But the decision to call in hospice is never easy or clear cut.
For a couple of years, I volunteered for our local hospice team. I witnessed first hand the program in action as they helped individuals and families on this journey. I am a supporter and yet, it was still a difficult decision for me, for our family. Calling in Hospice makes a statement; it requires one to say out loud, we believe this is the end.
Additionally, it can be a lonely decision because the medical profession is reluctant to call in Hospice. In many, I might even say in most cases, they resist calling in Hospice because it goes against all their training. They are in the business of saving lives, of fighting disease and healing the injured. They are not in the business of letting go. (And who would want a doctor that doesn’t give it his or her all each and every time one has a serious health crisis?)
The decision to call in Hospice can also cause tension within the family. Family members experience this journey differently, working though their own feelings and beliefs on their own time schedule. It may be a struggle to get everyone on the same page at the same time.
We were able to make the decision to call when it became clear that the medical profession could no longer offer corrective remedies to mom’s stokes. They could test and tell us that she had HAD a stroke but they could not prevent them or correct them. Mom was also more adamant in her declaration that she wanted to go home. Candidly, the only hold out to bringing mom home sooner was her family’s response. The medical profession had months before stopped offering solutions and mom had been saying she wanted to go home for weeks; we were the ones trying to “give mom a chance”.
National Hospice groups have assembled a list of signs for the pre-active phase of dying. http://www.nhpco.org/templates/1/homepage.cfm I recognized that Mom was experiencing some of the signs. She became agitated and confused in between long periods of sleep and lethargy. She did not want to eat or drink and when she did at the behest of her family the food was unappealing to her. At times her breathing was labored.
Hospice is not in the dying business; they are in the living business. Their goal is to offer care and support to individuals on the end of life journey so that they may live as fully as possible until the very end. They want to ease the burden of family members wherever possible. But still there is resistance. Somehow we believe that if we don’t declare that mom is dying, than she won’t be dying. Unfortunately, too many of us wait too long to make the call. The national average for length of stay in a hospice program is 14 to 20 days. But in reality, when families look back over the last few months of life for their loved ones, they acknowledge the process started a lot sooner.
My mother is home; her family and friends can visit as they please. She is sleeping more and communicating less. People who love her now surround her. I continue to pray that my family will love and support one another through this process but I rest easier knowing Hospice will be on hand to guide us on our journey.