Stages

Staging is a tool that most doctors use in following the progression of Alzheimer's in patients. There are various forms of staging. One is the number system 1 through 7, another is just Early, Middle, and Late. In staging which is not altogether perfect, one can track and prepare for the current place a patient may be in. My husband is in the Middle stage of the disease. He can still dress himself, bathe, perform basic functions, eating, toileting and the like by himself....although with supervision and instruction. He responds to simple directions and seems to understand conversations when it is one on one. His short term memory is almost gone. He will forget that you told him several minutes ago that his coffee is on the table. Sometimes he doesn't know where the table is. You ask him to sit down on the couch and he will turn in circles unable to locate the couch unless you take his hand and guide him to it. I had read about this stage and was somewhat prepared for it.



However, what I have found missing in all that I have researched and read is there seems to be an absence of staging for us, the caregiver, the spouse, the family of the patient. So in the process of my own experiences in dealing with this disease, I have come to realize that we too go through stages. The early stage is one of denial. Yes, he/she has Alzheimer's but with medication holding it, the disease, at bay he will have a "little" memory loss but will be himself for a long time. I can deal with that...memory loss. I will be his memory. Besides, some memories are best forgotten.



Then, the early middle stage, anger, impatience, resentment set in. Expectations are still high and at every turn are completely dashed. No, we can't travel as we had once planned. No, we are no longer able to enjoy the quality of life we once had together. Life becomes a series of doctors' appointments, arrangements with senior day care, making all of the decisions and doing all the tasks that you once shared.



Then the middle stage, letting go. The realization sets in that the life you both once had is over, that major changes are taking place and with each day, you let go of memories. Yes, you let go of memories. It becomes necessary for survival. You cannot cling to what was, you begin to live in the moment, the now because it changes hour to hour, day to day. Your mindset as a caregiver takes over. You are no longer a partner, a spouse, a friend. You are the one source of strength, comfort and care.



The late stage is one of disconnect. This is the hardest stage for us. I have witnessed it in some of the people in my support group. You come to understand what you must do for your loved one and yourself. And while guilt is strong in the beginning it is overcome by the reality that you can no longer meet the demands of the disease.



I love my husband, and will hold the memory of him in my heart. I still hug him, hold him and enjoy the warmth of his presence. When my father died, I remember clinging to an old sweater of his that he wore daily. It smelled of him and it gave me solace in my grief. It is now that same feeling when I touch the hand of the man that was my husband. I miss him and for the moment that touch gives me solace in my grief.

A Savvy Caregiver

I have recently completed a six-week training program for caregivers sponsored by the Alzheimer's association. It is designed to give caregivers knowledge, strategies and management tools in their roles, better yet, "jobs" in caring for their loved one with dementia. It was an extremely informative and helpful program and I recommend it highly for anyone struggling with caring for someone with dementia.

Personally, it has empowered me and it has released me. However, the process continues and each day as we (my husband and I) struggle with this disease, nothing is predictable and everything can change from hour to hour. Confusion is the key word, and not just for him, but for me as well. How can he be lucid, and hints of himself one minute, and then suddenly, stare blankly at me, not recognizing where he is or who I am? I am dealing with a moving target. My response level is better, my understanding and tolerance has increased.

I have now taken over control of our lives, his life. This transition wasn't easy. It wasn't a role I relished. Admittedly, I am a bit of a control freak but I've always liked having a strong independent partner to counter me, to provide the balance in my life, to ground me. Decision making was previously shared. While my background as an administrator has prepared me somewhat for this role now all the decisions are my sole responsibility and it can be a bit scary. My decisions can be life altering for him as well as for me. If and when do I make the decision to "place" him in a nursing care facility? Should we sell our home and move to a smaller more managable place? How do I manage our estate wisely? These are concerns that I would discuss with a partner.

I no longer have a partner, a spouse who responds, who cares, who knows. I have a person who is childlike, at times difficult and helpless, in my care who will never get better no matter how well I care for him. This disease is progressive and it is global. It affects not only memory but a person's entire range of thinking abilities and I am more aware of this each day.

But rather than mourn the loss, I have made peace with it. My expectations are now more realistic and therefore, it has released me. It has released me to make choices without guilt for him and myself. Traveling without him will become easier because I know it is as hard on him as it is on me. Planning to take better care of myself and therefore, able to better care for him has become a priority. I can now leave him in the care of others, knowing he is safe, involved and content. And I am able to enjoy the moments of connection with him however brief and spontaneous.

This is a challenging and awful disease. It is a cancer of the soul, it erodes the essence of an individual, it shrinks the brain until there is nothing left but the shell. Medications at the moment are designed only to slow it down. There is no cure.

Therefore, one must disconnect, must stop looking for the person inside the familiar physical being. One must be a caregiver to someone who will never benefit long term from the loving care that you provide. The best you can provide is safety, security and comfort and only in the moment. There will never be acknowledgement, or appreciation. There is no payoff.

Unless you count the strength, the fortitude, the personal sense of value you have acquired. You learn to appreciate the smallest of victories and enjoy the gifts of each day in your life.
Friends who have remained your allies and family who love and support you become all important as sources of comfort and joy.

Yes, I have become a savvy caregiver and I have learned incredible skills in caring for him and most of all......me.