And the question is...
What are our expectations as our life is drawing to a close.
I have worked with aging adults for quite some time. One caregiver tool that seems to always be true is an abundance of ‘Doing to you’ rather than ‘Doing for you’. In other words caregivers are trying very hard to help while in the bright light of day, truly not helping but rather they are hurting. This is not meant in the literal sense, but in the abstract sense. A prime example is upon seeing a patient sitting by themselves, a caregiver many times begin a conversation by asking if the person wants to go to an activity (currently underway) or to bed. Neither of these maybe true, however the person is not given another choice, and when given the choice they are not allowed enough time to answer prior to being wisk away to the destination the caregiver perceives is the correct one.
People require a bit of solitude each day. This is not due to some medical or emotional circumstance rather to a need for our body to rejuvenate it’s enter-self. Very few if any caregivers give this need any thought as part of the equation. And so we must ask ‘whose need are we satisfying’? Caregivers are taught to meet physical needs but rarely emotional ones. The few caregivers who respond to these emotional health needs are not taught this but rather have had some insight when making their way to adulthood via personal education.
The ability to meet our own needs is very basic and in most cases a learned skill prior to school age, however easily lost by caregivers in the oversight and care of physical needs. And another need that is not met at all is the need to personally practice our own spiritual beliefs. How will this basic of all beliefs be acknowledged? Each of us have spiritual needs which must to be met. These may or may not be religious, they may be doctrines taught during childhood, or lessons learned from pivotal moment formed at an especially complex time. The question is who will be available to speak for us when this need is not being met?
While in school studying to become a social worker, I was given an exercise that on the surface seemed easily undertaken. This exercise is one I give to each of you; tonight, when in the safety of your home, you have a devastating stroke. You awake to find you are unable to talk and many of the very basic decisions are no longer in your control. The question is who will give words to your basic needs. Perhaps a spouse, an adult child, maybe a sister or brother; the truth is - can this basic human need be met by another person. As I sat looking around the room, it became clear that even spouses did not have all the information necessary to help with this task. Adult children many times are caught up in their own lives and immediate family thus not having or the ability to access the information, as is true of our adult siblings. Frustrating as any emotional question can be, those everyday tasks can be the stimulus of the deepest depression ever encountered in our life. After all, we cannot even wipe our own bottom or scratch our eyelid when it itches.
What makes life worth living when we are disabled to this degree? ‘Hope’ is one of the keys to this situation and along with Hope is our spiritual needs. In most cases ‘Hope’ stems from a spiritual belief, but remember we cannot express these thoughts, needs or possibly have someone to express our wishes. Our world, at this moment, is made up of a stranger coming in to our room and providing for our basic needs without (in many cases) speaking to us. They do not try to answer the most elementary of questions (How did I get here? or What is wrong with me?’). So many times the caregivers have a broken English or an accent that makes understanding almost impossible. How are we suppose to function in this environment?
Before answering the above questions for a spouse, sibling or parent give careful consideration to our ability to do so. Is our answer what they would say or is it what we believe they would say? The goal is not to speak our wishes for them but rather to speak ‘their’ wishes not impacted by our desires or needs. How long ago was it that the two of you discussed spirituality? What is this person’s true desire when having a medical procedure? This is the time when we put all of our desires, beliefs and/or likes away; only giving the answers our family member or friend would. This is very difficult for anyone of us to do well.
When taking all this information in to account, we find this is extremely difficult to do. Each of us has spent our life developing our own belief system. Even spouses do not agree many times on the issues of when to stop life-support. What about for a child, albeit the age of the child be considered adult, how do they reach a decision when answering for their parent? Or when there are three, four or more siblings to make this determination, when was the last time they totally agreed on anything. And what if you, the patient, are the last remaining family member, with no one to help with these questions.
Now before it seems that this conundrum has no resolution, let me just say there are legal tools to answer the main life and death questions. And there is always a Case Manager that can be paid to know all the answers and be available to answer for you. What happens if this Case Manager is not available at the exact moment needed to answer for you? Or what if in all the fact finding the Case Manager did not ask if it was OK to have a representative of the religious or spiritual counselor of rather than your own personal clergy?
These are not easy questions when taken at the totality of their meaning and our desire. What if our religion is not an accepted religion for the Case Manager? Can this person still act in good standing to represent us? There are no guarantees in this part of our life. There is however ways to attempt to meet this or other situations by having the answers recorded ahead of time. If there is a concern on your part regarding these situations please search out your answers now and be sure they are written down.
Some conversation starters for family and friends.
Numerous documents may be used to begin the conversation with family and friends of what our expectations are. It is important to remember that no document is 100% fail-safe. Clear conversation and written guidelines are the best we can do. I have provided three different types for your information below:
Five Wishes - recognized in 40 states for a tool to be used as a personal decision for adults. This document can also be used to begin the conversation with family and friends regarding our inner most beliefs, concerns and details when approaching a life-changing event. (Be sure this is recognized in your state of residence.)
Legal documentation – drawn up by an Attorney can be used in the state written. Different states have different legal ease, be sure your documents will meet the test your state laws. There will be cost to draw it up and many times a cost to execute the document.
POLST – a tool for medical use only is filled out in the presence of your medical provider and should be maintained in your active health record and in a prominent and clearly visible place in your home.