When somebody near and dear to you is diagnosed with a terminal illness, there is a cycle of grief that you generally go through. In fact, it even has a name: the Kubler-Ross Five Stages of Grief. Generally, it refers to the person who is diagnosed with the illness. But I believe it is very much the same for the family members and close friends of the diagnosed person as well. The stages differ for each person. Some may skip a stage. Some stages linger longer than others. And sometimes you return to stages that you've already gone through. There is no one way to go about this process; grieving is a very personal thing. But in general, there is a pattern of 5 different stages that people go through when they learn they will be losing someone they love.
1. Denial: "The test results must be wrong"..."there must be a mistake"..."there is some way that we can beat this"...these are all common thoughts during this stage. It's a difficult thing to accept a devastating reality, and many people refuse to believe it.
2. Anger and grief: This can manifest itself in many different ways. Some people feel angry with themselves; other times their anger is taken out on others around them. There is a feeling of wanting to blame somebody for what is happening.
3. Bargaining: If a person has a God he/she believes in, there is usually pleading or bargaining with Him to spare the life of the ill person.
4. Despair and depression: This is similar to grief. but with depression comes an emotional attachment with a sort of acceptance. Each person handles depression differently, but usually a person who is depressed detaches themselves from others, preferring to be alone with their feelings of despair. It's natural to feel sadness, regret, fear, etc. These are the steps to acceptance.
5. Acceptance: This varies greatly from person to person, but generally there is some sort of emotional detachment as the person accepts what is to come. The person diagnosed with an illness usually comes to this point much sooner than the family/friends they leave behind.
Like I said, this is a cycle, which means it goes round and round. You may find yourself working through one stage, getting through it, and then returning to it at a future date. I think it also varies with each illness. In our case, dealing with dementia has been quite a different experience than dealing with other diseases; for example, Lou Gehrig's disease (which we experienced with my grandfather). Though there are the 5 basic stages of grieving, I think there is a far broader range of emotions that one goes through when dealing with this sort of illness.
My mom's "illness" has been an interesting cycle for us. I can't write exactly what my family has experienced in this cycle (though I've seen them go through various stages); what I can write about is my experience with it. It is unique, in that we did not get the "earth shattering" news all at once. As I explained before, this has been a gradual process, beginning around the time of her surgery (and in hindsight, it actually started at least a year before her surgery). I would say that my grieving process started before I had any idea that she was "sick"; I just didn't realize it at the time. I have felt a broad range of emotions over the past few years: hurt, anger, frustration, resentment, guilt, sadness-just to name a few. It's been hard to process all of these emotions-mostly because I didn't realize they were attached to an illness. It makes so much more sense now that we have a diagnosis and I feel like I am finally able to sort out many unresolved issues that I have had over the past few years.
Semantic Dementia begins with a sort of detachment between the person and the people in their lives. They become forgetful and distracted, tired and self-centered. In the beginning, I felt hurt when my mom started to lose interest in me and in my children. I felt hurt when I would call her on the phone to vent a frustration, a sadness or even a joy, only to hear her on the other line changing the subject to the ache she's been feeling in her arm; no response to what I had just said to her. She never wanted to be bothered to watch the kids so we could go out on a date night; she was always too tired. It hurt to see other grandmas doting on their grandbabies and I felt like there was something wrong with me, or my kids, that made my mom detach. I couldn't understand it or make sense of it.
Eventually her detachment led me to anger. Why didn't she care anymore about what I have to say? Why didn't she want to engage and take advantage of living closeby her grandbabies? I felt resentful at her selfishness, and angry that she did not appreciate having us live nearby and that she did not seem to want the close mother/daughter relationship I craved; the relationship we once had. I felt resentment when I would see friends going out and spending time with their mothers. Why couldn't I have a relationship like that with my mom? I had once had it, why had it changed? What did I do wrong?
I felt myself begin to pull away from her. I suppose it was a wall I had built to guard myself against the pain of rejection. For a while, I was bitter and maybe even cold towards her. I can remember it being Mother's Day, and while I celebrated the joy of being a mother, I secretly mourned my mother because I felt that, in many ways, I had no mother. I had pent up feelings of anger and bitterness inside and didn't feel like I had much to celebrate with my mom. I feel guilty about those feelings now, knowing what I know about her illness. But at the time, I was unaware of what was going on with her and I was reacting only at the hurt that I felt.
As time went on, and her behavior became more and more odd, my anger started to turn to frustration. It was apparent that something else was going on, and we suspected it was due to her surgery. My sister and I researched several options of what was making mom so "weird" and after stumbling upon information about "temporal lobe damage", we concluded that was the cause. Of course the anger returned, this time directed at the doctors who we felt were responsible. Somebody needed to be held responsible for the damage that was caused, for the person they took away from us. We even went so far as consulting an attorney on the issue. We took my mom's 8-inch thick medical file to that attorney's office and were convinced he would tell us we had a case. Instead, he looked through the file, reading her history, zeroing in on her surgery, and said that, although there was definitely something going on with her, nothing looked out of the ordinary as far as the surgery was concerned. We were left feeling confused, angry and hopeless.
Several people had thrown out the idea of dementia. Perhaps part of this was the denial phase for me. I was adamant that it was not dementia, but brain damage from the surgery. It was the only thing that made sense to me-to my entire family. I suppose deep down we all knew it was a possibility. But to admit dementia was to admit that she would never come back. Even with "brain damage", she would never return to the person she once was. But we thought she would eventually adapt and learn to live with the changes and live a somewhat normal life. With dementia, there is nowhere to go but downhill.
It has been a week since mom's trip to UCLA, where the doctors have said that all signs point to Semantic Dementia. As I researched exactly what that meant, my heart hurt and I experienced so many emotions over those next few days. I felt guilt; guilt that I had so wrongly misjudged her. I felt anger; angry that I would inevitable lose my mom. I felt fear of what is to come in the future. I watched my grandfather suffer in his final days, as he lost the ability to care for himself. Is this what is to come for my mother? Is she going to eventually forget who I am? Will she be unable to care for herself at some point? I feet sadness at the time that I had wasted in my misguided anger at her. I feel sorry for what has happened to her. Her life, as we once knew it, is gone and she's still relatively young; only 50 years old.
I know that this will be a rollercoaster ride. I feel much stronger now than I did a week ago when we received the initial news. But I am sure that will change as time goes on. We are still awaiting an MRI, where they will get a closer look at what is going on in her brain. I have prepared myself, mentally, for more bad news. Even though I feel strong now, I may revert back to a "depression" or "denial" stage, depending on what the results say.
I think that over the past week, I have had some time to reflect. I wouldn't say that I have passed the grieving stage completely. I am finally able to talk about it without crying (for now, anyway). I have realized, to some degree, what this disease means and I know that there are some tough times ahead. I know that everyday is a gift from God, and we must use this time wisely. I will not spend another day angry and bitter, ashamed and embarassed at my mother. Instead, I will embrace the time that I have left with her. I am preparing myself to be there, physically and emotionally, for both my mom and my dad. I'm prepared for a rough road ahead, but I am thankful to have a strong family to help each other get through the ups and downs that lie ahead.