Long-term Grief

by Jill Francis on January 21st, 2014

 We've all heard about the five stages of grief:   Denial, anger, bargaining, depression and finally - acceptance.   And most mental health professionals will tell you that it takes about 1 or 2 years to work through the grief cycle, after which time you should seek professional help if you are still struggling.    But what of the grief cycle for long-term illness?  Perhaps there's research out there, (I didn't even bother to look),  but I really don't care what the research says because I know how I FEEL.
When my mother was diagnosed with early-onset Alzheimer's Disease, I ate my way through the grief cycle. A few months and several pounds later, I finally accepted the fact that my mother had Alzheimer's and that we were in for a few difficult years. ...that was 12 years ago and I have learned that "acceptance" is relative...to the moment.
To say that Long-term illness is emotionally wearing would be the understatement of the millennium, and I've decided that part of the "wearing away" is the continual grief cycle.  (Again, I have done no research, I don't even care if its out there, I know what I've observed my father go through and what I have gone through, and I'm sure its typical of other caregiving experiences). Alzheimer's patients decline in stages:  the loss of short term memory, long term memory, the ability to take care of themselves, feed themselves, walk, talk, etc...and with each loss, the caregivers grieve:  we deny that they can't remember to feed themselves, we're angry that they can't bathe themselves, we bargain over the loss of continence and we're depressed that they no longer know who we are. And just when it seems as though we've accepted the current reality...it changes again... And we grieve again.
Denial, anger, bargaining, depression, denial, anger, bargaining, depression...it's no wonder 50% of Caregivers die before the patient; not only do they have the stress of constant caregiving, they're continually battling the negative emotions of grief, as well as isolation, loss of sleep and loneliness, to name a few other issues.  And if others are like I am, they may become stuck in one stage of grief and negative emotions more than others --for I've found that I seem to become stuck in Anger...and it's not pretty, but at least I'm aware.
And when I find that I'm stuck, I call my brother and rage, I go for long walks, I cry in the shower and I eat chocolate, or ice cream or make my grandma's Southern Sour Cream Pound Cake and I call a girlfriend and I cry some more. Eventually, the anger becomes acceptance...until the next time.  Fortunately, I'm typically aware of when I'm stuck in Anger; however, I can't speak for those who are unaware that they're stuck in a "phase".  I know how to become "unstuck", but if others are unaware they're stuck, they certainly won't know how to process through the phase -  which will only lead to more stress, depression, lonliness, isolation, etc.  
If you're a Caregiver, don't go through the stages alone; talk to someone, see a professional if you need, ask for help, find a way to work through the endless stages and negative emotions. If you know a caregiver, watch for the signs, then take action: call them, check on them, let them walk with you, give them a day off, make them go to lunch with you, take them a pound cake, let them be angry, help them find a way to work through the emotions and don't judge how they do it, this is not a "one size fits all" process.
Denial. Anger. Bargaining. Depression. Acceptance...it will one day come for the last time, but we continuously cycle through in the meantime…

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Wanda - January 21st, 2014 at 6:15 PM
Well done Jill. Very true.
Donna - January 25th, 2014 at 9:41 AM
Thanks for sharing your journey! That fact that you can put it in words is a testimony to the continual growth and healing taking place in your life.
lorna - January 25th, 2014 at 10:39 AM
love your stories, thanks for sharing!

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