I am furious over the fact that everyone diagnosed with cancer is urgently prayed for, meals are prepared and taken to them, gift baskets are filled to lift their spirits, treatment options are offered, percentages for a cure/remission are often very promising. Get diagnosed with AD and watch everyone walk away, never ask how you are doing, avoid you like a plague! No effective treatment options and absolutely no chance for a cure. I am really struggling to deal with all this as a beloved Sunday School member fights cancer with so much love and support. And I sit there alone because my spouse is slowly DYING and no one even thinks to consider what we are going through. Just an offer to provide a meal or a couple hours of respite has never crossed their minds. We are lepers!!! Dealing with this disease has certainly given me insight into what is involved in 24/7 care giving. I pray that I will not be as cold hearted as those that seem to surround me! I truly thank God for literally carrying me when I feel too weak and defeated to continue on my own.
I've already posted on this topic, but a couple of additional things came up.
In August I met with the chaplain of the local hospital. He is in charge of all of their grief support groups. I explained to him why I thought people dealing with a dying loved one needed a grief support group, especially when their grief is long-term, with no "closure" (I hate that word, but don't know a better one). After quite a long conversation, he agreed that there was a huge unmet need in our community, and committed to getting a grief support group started for us. Since then we have e-mailed a couple of times back and forth about the group.
Last week I got a voice message from the chaplain saying that he didn't think he could start the support group. However, he had a brochure he could send me about dealing with grief. I thought the brochure idea was insulting, frankly, as if reading a brochure would be sufficient to deal with the grief of watching my husband die. And I already have half a shelf of books about grief and widowhood. What I wanted was a chance to talk to other people who are going through this same experience. I'm attending an Alzheimer's caregiver support group, but most of that time is spent more on the nitty-gritty of caregiving. Anyway, I thought the topic on anger best fit this experience.
My therapist this week gave me a handout showing all the emotions of grief as a huge tangled ball, with all the different strands labeled with an emotion. As I looked at it, I saw Rage, Pain, Guilt, Rage--again, Anxiety, Confusion, Rage--again... It seemed that there was a theme as I looked at all the little twists and turns of Rage throughout the ball of emotions. It helped a little to know that it is pretty much normal that there is so much anger and rage involved in grieving. We are all grieving, but it seems to me that dementia caregivers have more cause than most people to feel that accompanying rage.
Hi Jan, You’ve pointed out one of my pet peeves - the tendency of support groups and others (including the funeral industry, of course) to define “grief” only as a reaction to a loved one's death.
However, many definitions of grief describe it more broadly as “a reaction to a major loss of someone or something, “ a strong emotional response to loss,” or “the anguish that a person will experience after a significant loss, for example, the death of a loved one.”
So if people don't consider the anguish that we experience while our spouses are still alive as “grief,” what word would they use to describe it? Maybe if our feelings had a label, then someone would start a support group for it.
In the first years after diagnosis I was in the same total state of despair as so many of you too. probably more so as I had not discovered this website and the help and friendships to help me see thru the darkness in early years. with each year we grow and seem to find something in the past years experiences to help see us thru to the next. and as I found what scared me and exhausted me in the year I complained seemed to take backseat to the next as new issues cropped up, the last seemed much less dramatic in comparison to whats coming. so if there is any solace, its we grow with this disease- as does it within our spouses, only in knowledge and experiences- some good some very bad, but we learn tolerance, compassion and what helps to keep us from caving in. we find within ourselves what we must do to survive even during the last difficult times. the surprise at the end of the road, is its what we must do, evolve manage and survive. thank goodness there is this place to come with others who have the same thoughts experiences and can help each other.