Working in Home Health Care, we work with people in their late eighties and nineties. We assist them and their families to be safe and cared for. A significant number of clients have advance stages of terminal diseases. Death is the final stage of their journey. As a society, we have difficulty in dealing with people and those who are our loved ones as their life on earth dwindles.
At some point we will all die. We live with this knowledge and usually avoid it. When we are going through the last phases of an illness with a parent or other aging adult in our life we are facing their mortality and our own. It is a difficult time, usually made more difficult by not knowing what to do or say. The hired caregiver/aide helps with the most personal physical needs and may be the ones who are around during the quiet times. They have experience with seeing someone out of this world. Few if any of us want to die alone. Hospice, Palliative, Home Care and Hospital care are what we will most likely experience.
Perhaps staff, usually the Nurse, is trained about these things, family members usually are not. Here are some “starting point” tips of how to get through, care for yourself and be of true support to a loved one who is in the dying process.
Beyond being comfortable, cared for, safe and pain free; all of which the “skilled” staff will oversee, it is usually the “civilian” family member who must learn rather quickly how to act, what to say and how to get through this painful period.
First comes a recognition that your loved one (or yourself) is in fact dying – symptoms are worse, treatments aren’t working, energy is gone. It is important to have hope and it is also important to face the reality of the situation. A person can go on for many months being fatally ill – what do we say to them and how do we interact? Do they know they are dying? At some point, on an intuitive level, a person and loved one knows they are not improving and that in fact death is approaching. This realization itself can have a cathartic release. There can be an emotional shift from fighting the disease to giving meaning to the remaining time. There is no right or wrong way to begin the grief process, only your own personal way. There is still time for new memories and possibly even nobility in how you handle this stage.
Emotions will be very strong and may be fleeting or coming in waves, singularly or in combinations. There may fear, anger, sadness, denial, a sense of urgency, a sense of relief and acceptance. It is critically important that the person dying and their loved ones have someone to share their feelings with and to cry and laugh with.
Doctors and hospital staff differ – some may make it more difficult and others may be more helpful. Few doctors will give specifics but you and the patient have the right and need to know some general things so that your mind can focus on what to expect or do. Ask their professional opinion as to a timeline – best and worst case scenarios. What is the progression of the disease like and the last weeks or days? Not everyone will benefit from this information. Ideally, someone of influence in the family whose personality is to get the information and work with it, may be the best person to get the overall medical perspective.
Begin focusing on priorities. What do you need to get done? Put in order? Indulge your fantasy with and so forth. When you figure out what is most important to you or your loved one, the other things will become more trivial and take less of your attention and energy. Some of the first things are the mundane – putting things in order – wills, directives, some good-byes, Besides the “business” of dying, there is the emotional side of all of your meaningful relationships. Erickson named this final stage – Integrity vs. Despair. We all need to find meaning in what our life meant – to ourselves, to family and to the world. What did we overcome and what did we shy away from? Speak to each other, share your feelings, positive and negative. If you are dying, you have certain liberties to do away with pretense – do what matters most to you or your loved one.
With what can almost be a “planned” death, there is opportunity to indulge the spirituality of life and death. Try doing a Spiritual Evaluation of your life and relationships. We so often ignore or are unaware of our spiritual selves. Most everything else will be taken care of by someone else: doctor, lawyer, clergy, family, friends etc. Your spirituality is yours. Ask yourself or your parent some of the following questions to begin the first of many conversations – the sort of “stranger on a train” or “drunk in the bar at 2:00 a.m. type of things:
Ask “Who have I/you been?
What do I need to finish or release so that I can be more at peace?
What am I proud of, grateful for?
How do I want to be remembered?
What have I learned in this life that I want to teach to someone else?
What are my regrets? What could I have done with more grace? Can I still do it?
There can be something almost liberating to have an idea of when you will pass on, use it! Let yourself be comforted or to comfort the person you will be using. Speak of serious things – they are on your mind and likely on others. If not, then you can say “no” or your loved one will. Sometimes receiving the “permission” to speak about serious, meaningful things will allow these subject to flow.
Learn or discuss with your loved one, their thoughts on the afterlife, their religious beliefs and how their spirituality helps with their current condition and the transition of their spirit.
No doubt these are difficult conversations through a very serious situation. Reality at the end of life forces one to react – either by shutting down or showing amazing grace. Your understanding, acceptance and courage to share this journey with your loved one has the power to transform you both.Read more