Love Versus Hate
This could be the most difficult dementia issue which I have ever addressed. What I have to share is distressing and quite shocking to those who do not experience living with a loved one who has dementia. I am writing this chapter with reservations. I know that those who are submerged in this experience will connect, but it may be too difficult for others living their normal lives each day. It may be especially difficult for a child whose parent is caring for their other parent with cognitive decline.
When we love another, there are many reasons. We love our parents for devoting their lives to us, for being supportive, for being our friends; all in spite of our failings. When we love our life partner it is partially because we have shared our lives together, and partially because we felt the comfort and fulfillment of their love and commitment to us. I know this is not a complete analysis, but it is a beginning. There will be people who will read this and react viscerally that they did not have loving parents or a loving mate. I address this up front because for those amazing human beings who care for another with that history between them, books need to be written, not chapters. They are indeed heroes and heroines. They need to know that we respect and admire them.
Today I was informed that one of our temporary aides has asked to be replaced. She finds Hubby’s bursts of anger and verbal assaults too much to bear. I really do understand. Sweet and fairly innocent care-givers come to help us, and are shocked at the difference between caring for the elderly who are generally in ill health, and those who additionally have cognitive impairment. I will try to help her to understand and hope that she can continue to cope with our situation.
This caused me to reflect on the many statements I read from those seeking advice. It is not unusual to read “I hate her. I cannot do this anymore.” Or “I want my husband back!” or “Why do I hate him?”
Those of you who know me will be frightened by what I am writing, but I must insert here that I do not hate Hubby. I forgive him, over and over and over. I am fortunate that he still expresses his love for me, and when he does, I see glimpses of the man I cherished for most of our time together. For many, this is not the case, and that makes their journey with this disease so much more complex.
It is certainly difficult to love another human being who has no filter and who becomes angry for reasons we cannot comprehend. Books have been written about love and none of them include verbal abuse, total dependence and irrational reactions.
For those in emotional pain, distraught at what they are experiencing, it is a form of mourning. We mourn for the relationship we have lost, for the person who was there for us. That person is now only focused on themselves, and expects all around them to fulfill their every need. They are unable to understand what is happening, and are totally dependent on those caring for them.
For those of us who look at our loved one and see someone whom we no longer know, I do want to offer one suggestion, which may help us all to survive this overwhelming experience.
With time, it is possible, with concerted effort, to create what I have creatively named “an invisible shield” around ourselves. This shield allows the insults and the experiences we endure to be separated from who we are. There is a time when we must say to ourselves that we will not allow this disease to touch us. If we do not successfully take this approach, we will be damaged emotionally and possibly physically. When we begin to think of the disease as our enemy rather than the human being who is suffering from it, we will begin on the road to our own emotional recovery.
We need to remember the relationship at its best. What we are experiencing is the opposite. Select your favorite photographs from your life with your loved one. Look at them frequently. Allow yourself time to pause and reflect on the gift that their love contributed to your life. I am constantly looking at the photos of Hubby and I during the terrific years and experiences, in order to create a balance within myself in dealing with this disease.
It is essential that those of us who once loved with passion and commitment, not lose those memories. This is what we will retain when this journey is over. If we allow this disease to diminish our memories, we will be damaged long after our loved one passes.
Hate is an emotion reserved for our reaction to our enemies. We all most certainly hate the disease which has changed our loved one. This disease is our enemy. We must, at all costs, remember that if the person we are caring for had any ability to change their condition, they most certainly would. They would not want us to be in pain at their expense because they really do love us even though they may not be able to express that love.
Create your “invisible shield” to let the experiences which normally upset you stay far away from your heart and your head. Allow yourself the distance to look upon what is happening, as if it was someone else with the disease. We only hate the person with this disease when we have not accepted their inability to fight it. This is actually a conscious decision which each of us must address. When we truly accept that it is not their choice to act or speak as they do, we can love them once again.
