The Pain of Alzheimer's

There are many slow subtle changes with Alzheimer's. The most difficult part of this disease for Mom is not the dementia, but the lucid moments when she knows that things are changing. She feels the loss and feels frustrated and angry when she can't remember.

The family is feeling the loss of relationship with Mom. She responds differently in conversations, can't participate with the family to the full extent that she previously did and can't assume the same amount of responsibility in life or in the relationship. Moving Mom out of her surroundings and into a safer and more compatible environment has evoked many painful feelings as the old and familiar surroundings have been left behind. Family gatherings are held in a different location after years of traditions and familiar family rituals. Some valuable and special moments have been forgotten and lost forever. Sometimes we share Important information and that information cannot be retained. The frustrations of trying to remember doctor appointments, events of the day or even the loss of certain abilities that help us each day in life become overwhelming at times.

One of the areas that we most struggle is over the medications. Moms meds are locked in a secure box and administered by a third party twice a day. Since she arrived in her new home, she does not remember receiving her evening medications. The staff has graciously written the time and date of her medications administration on a white board on her refrigerator, all to no avail. She does not remembe to check the board.

While replenishing the pill box with a fresh dose of medicine, I often encounter Mom's wrath at having her pills secured out of her reach. One of the reasons we moved her was due to medications and the confusion that they were causing. Her promise to not touch them attempts to change my mind about locking the lid on the box.

On other occasions, she loudly proclaims that she is not receiving any medications. For some reason, this area of memory is not working for her. I hear tales of other Alzheimer patients who don't remember when they last ate and insist they are being starved.

My response regarding the medications is to show her the empty pill boxes I have removed and point to the white board, applauding the efforts of the gracious staff to keep her informed that they had been there while knowing full well that we would have this same conversation again. She seems to hear the explanations and realize that again her memory has failed her. The subject is dropped for now, but I know that we will soon have this conversation again.

As an Alzheimer patient, Mom relies on the decision others make on her behalf and in her best interest. As the disease has progressed, many daily functions of life have become overwhelming and other people must step in to keep her safe and healthy. She has been feeling a loss of control and been experiencing a wide range of emotions from the many changes that have occured. Decision making is not easy for the Alzheimer patient. Finances, medications, and some daily self care have become too much for her to handle alone.

The battles are not always easily won when a safety issue has to be established. Reciting the facts with explanations and reasoning with Mom can often sometimes alleviate conflicts, but not always. Remember, the caretaker is dealing with physical, mental and emotional levels. The most difficult part of the change to deal with has been the emotional side. As Mom has realized her losses, processed the changes and begun to deal with her emotions, it has been very painful.

As her caretaker, it grieves me that she is in such pain. As a family member, I too have shed many tears in the past few months. The grief process itself includes anger, sadness, and denial. I have experienced all of these through this transition phase. Likewise, my Mom has experienced and expressed these same emotions over time, but the sadness is now prominent. Tears and conversations are flowing freely. I am grateful for those special conversations that express insight and heartfelt emotions. Sharing those feelings and concerns is a healing process that is uncomfortable and painful.

There are no short cuts through the grief process. We all grieve our losses eventually. We can stall them, but they can overtake us at awkward times when stuffed and not processed. I choose to address the pain and feel the feelings to process now. I believe that it is healthier for the body and emotions. Talking with others about my process can help me gain perspective and insight about myself and the situation.

Tomarrow is another day. Both of us have an appointment at the dentist office. Another day, another issue? We will see.

Even as I share with you about my Mom, I am incredibly grateful that she is currently content. She has accepted her new environment as home and the community has welcomed her into their midst. She is well fed and looked after when I can't be there. There are still moments of lucid conversations that allow me to connect with her at some level. I have the joy of helping Mom live her life as fully as she can. Mom is generally polite and gracious when others help her.

For now, she recognizes all of her family. The names of some friends have been forgotten, but many of their faces remain familiar. Social settings can be overwhelming, but still fun for her as she reacquaints herself with old friends not often seen.

Whenever I feel sad at the circumstances we now face, I remember that Mom is still with us and we have many memories that are still being made as we surround her with love in these last years!