Enduring the Unending Grief of Alzheimer’s Disease

Living through, surviving, withstanding, bearing, experiencing, braving, undergoing, tolerating, suffering, stomaching, persevering through, carrying on even though, lasting – all are synonyms for ENDURING. Each word carries a special and unique connotation today and all of this may change tomorrow. Living through grief provides hope that day-by day the one suffering can make it through with shreds of sanity and love in tact. Surviving or suffering sound much more trying – and exhausting. Bearing and bracing offer strength. Stomaching strikes me as the internal turmoil of decision and indecision. How do you best help? How do you make the right decisions? How do you get up and drag through another day with hope when there is no hope?

Grief comes at many times throughout life – the loss of a pet, moving to a new town, the death of a beloved grandma or grandpa. Living removes those we love as it teaches to navigate the pain of loss until we meet life for the living once again. Some endure in silence; others shout in pain; some refocus quickly while others do not. There is no right or wrong just as there is no confirmed, verified “normal” path for grief. Perhaps that is one of the most important lessons in forgiveness and understanding: each of us is diverse in infinite ways.

Alzheimer’s disease repeated death as one loses functions and abilities again and again. These are intertwined with a sort of rebirth. Aunt Sally forgets today, remembers every detail tomorrow, cries inconsolably on Thursday, and recalls none of the week by Friday. This week she is with it and on the go. Next week she accuses you of theft, gives away her precious Christmas ornaments, and then butters her bread with soap. But wait… Saturday is better, the conversation flows, just about everything makes sense, until the jam is served with mold and dirty dishes now serve as garden stepping stones.

And so the steps of grief wander and take on odd appearances as today you deny, tomorrow you are angered, and next week regret grasps your every move. The steps of grief vary in order and in intensity; what seems right becomes wrong; what was so wrong now feels so right. You are confused, almost as confused as the family member you love and are attending to.

  • Denial – Denial is the absolute refusal to admit or even consider that there is a problem, a worry, and a concern. Ah, there is bliss and safety in pegging odd moments onto forgetfulness! Denial is safe, secure, and offers protection from reality. Some may never emerge from this stage; others readily accept a diagnosis and medical evidence and prepare to move forward in understanding this disease.
  • Admitting – A first step in moving forward with confronting Alzheimer’s disease is admitting that a problem exists. When homes are left unlocked, driving leads to tickets, and money disappears, help is needed. Acknowledging the need brings proper diagnosis and supportive information and guidance. Many health issues manifest themselves in ways similar to Alzheimer’s disease (agitation, forgetfulness, stress, or depression, for example). A qualified gerontologist and neurologist assure that you receive proper information and advice so that interventions for a better life may be made.
  • Anger – Anger is a demon of rage and may arrive and take hold of the victim or of the caregiver and family. This anger may be self-contained anguish or it may be something vented on others even when there is no plausible cause for such reaction. Anger often comes and then goes when bits of hope and reassurance appear only to explode in unexpected blasts. Diverting anger into safer methods of dealing with it may help: running, building models and participating in crafts, writing and raving and then tearing up the paper and tossing in it into the garbage, or screaming into the wind are tools that have helped me.
  • Blame – Blame is often tagged to place the fault on someone or something else or even on the victim himself. Sometimes there are errors by doctors, family upheavals, or friends who seem unsupportive, but most often the blame on Alzheimer’s brings no positive results. Alzheimer’s is not something a victim wishes for or self-inflicts. It is not contagious, although it may be inherited. Working away from blame clears vision and is essential for renewing a positive outlook. Blame and anger working together greatly add to pain as they reduce the hope for healing and may cause harm to one’s health.
  • Helplessness – Helplessness often means giving up or falling on “Oh, well, there is nothing I [or anyone] can do.” While currently there is no cure, there are some drugs and treatments that are helpful especially after early detection. It is important to remember that the victim did not give herself this disease; it is also important to call for help to escape fugues of helplessness. Whether you are a victim or caregiver, support is critical to well being. No one has to travel the Alzheimer’s route alone. Helplessness can transform into hopelessness, and truly there is hope.
  • Guilt – Guilt is the feeling that this happened because of something you did or did not do; this may also extend to the “would have, could have, should have” sensation of regret in “If only I had… ” Children and adolescents often spend great amounts of time in this emotion as do families and friends who have parted from the victim in anger and have not found or created the opportunity to make up. You are not the cause of Alzheimer’s disease. Examining and releasing feelings of guilt build toward a positive attitude that is vital to good health.
  • Regret – Regret is many times tied to guilt but it also includes feelings of helplessness with less blame on the disease or the death and more blame on good times that could have been if only Alzheimer’s had not arrived. Know that good times are possible even under the shadow of Alzheimer’s. Regular routines, quiet walks, and avoiding confusion make life seem sort of “normal”. Every minute is precious and as times of cognizance become scattered and few, treasure them for the momentary flashes of reuniting that they provide. Regret may also be the wish that you had behaved differently. Since the past is impossible to rearrange work toward a happy now and happier tomorrow.
  • Forgiveness – Forgiveness means pardoning the disease, the victim, the loved one who has passed, the mistakes that have been made, or the difficulties that have arisen. Forgiveness most often takes time but it brings such relief and clarity of vision for the future. Forgiveness absorbs many negative emotions, empowers the forgiver, and leads to recovery and a belief in the goodness of living. Forgiveness enhances and revitalizes life.
  • Acceptance – Acceptance entails knowing that while the long journey of Alzheimer’s is devastating, there is also a need to move forward. It does not mean you have to forget or that the pain of loss will never return, but it does mean that the world can take on a lovely glow once again. Acceptance helps you surface from the whirlpool of grief to breathe wholeness (or near wholeness) once again.

Reflect on these stages of grief. Relate them to Alzheimer’s disease or relate them to any situation where overwhelming loss and pain exist. Modify and adjust to meet you needs, your understanding. Use them to help you recover and survive.

Source by Gini Cunningham