Grief is a painful and necessary part of coming to terms with a serious medical condition for your loved one. It seems everything changes so that it’s difficult to take it in all at once. The medical and health issues are often the first and obvious concerns. People are resilient – most are pretty good at pulling resources together to deal with an immediate crisis. However, when the first firefighting efforts have passed, this is usually when you survey the damage and realize things are never going to be the same again.
While we may handle the initial crisis well, our brains like routine and predictability. A serious illness seems to shake everything up that we once counted on as consistent and known. Some of the things that change are what our loved one can do for themselves, their happiness or satisfaction with life, maybe their personality, and how we relate to them. We (along with our loved ones) don’t want the changes that illness brings and will fight this. Fighting against it makes grieving more painful or even impossible if you stay in a state of denial, refusing to recognize and accept the changes. I have been in this place plenty of times, but not when caregiving for my late husband John.
When John was diagnosed with dementia and in the months soon after, I was heart-broken at what John and I were loosing and how his health was deteriorating. I cried and wished things were different with every loss of his independence, every skill he lost - being able to tell time, use the computer, use a telephone. I wondered if he would remember me, and if I would cease to recognize him at all as the person I knew.
But the key difference is that I didn't fight it as I see other caregivers fight it. I won't say that I accepted the changes easily or completely. None of us want for our life to change, even when we are in miserable circumstances. It's known, it's familiar and we are most afraid of the unknown. I am saying that in the larger sense, I realized with startling clarity that I had no control: no control to stop the illness, no control to change the course of his decline, no control to keep it from happening, and no control to even make it the least bit better. Also denial wasn’t much of an option because John’s dementia was fast progressing. It was too big and the changes in his function changing too fast to ignore it and pretend it wasn't happening.
So I felt the grief, the sadness, the anger, and the fear instead of resisting it. I cried in my car on the 90-minute drive to work through the back-roads with little traffic to distract me. I cried out to God and poured out my heart in my pain and misery. I actually don't do this as well now as I did then. But then I was desperate and things were changing too fast for me to use my usual strategies.
Instead of fighting the changes, recognize that you are grieving and get the support that you need to do this well. Joining a support group is one of the best ways to express your feelings and help your mind make sense of all of the changes. Take care of yourself by finding loving support from safe people. If you need more help with this, give me a call.
I am a health and happiness psychologist. I had an amazing opportunity to care for my late husband with dementia that brought everything into focus: love, purpose, healing, self-care, and living without regrets. You can read more of my story here.
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