Grief After Death

The emotions a caregiver will experience prior to, and then following, the passing of a loved one with dementia can range from profuse grief and loss, to being bewildered and incredibly confused, or feeling numb or relief.  Often, it is a combination of all these feelings and can change from one to the other very quickly.  

After years of concentrating on the well-being of your loved one, it can be very disorienting and complicated to work through your feelings because everything else was secondary.  You only felt good when they felt good, and now you no longer have them as an index to measure your situation and progress.

I consider Alzheimer's to be the long goodbye because it is a prolonged process whereby a loved one very slowly fades away; ultimately becoming merely a cipher or a shadow of his/her former self.  It seems that after going through many years of a very gradual but constant decline, you would be prepared for almost any eventuality.  At least that is what I was feeling.  It wasn't like Kristie and I hadn't had plenty of time to take our leave of each other, and really - how much more can someone grieve after all; or so you would think.

Following Kristie's death, I wrote in my journal, "I am glad that she is free; free at last – but still it hurts.  It hurts not just that she is gone, but for how much both of us lost."  

I lost Kristie many years before, but her care and well-being were the most important thing in my life and everything else was subservient to looking after her.  It is hard to adjust when the most important thing in your life is gone.  And I consider myself fortunate, because I have a strong reassurance of our relationship continuing hereafter.  Nevertheless, it takes time, reflection, grieving, enduring, and healing to live again.

Hospice provided me with information about the grieving process which was helpful, though my circumstances were very different from what they described.  They talked about how different my life would be without a spouse, and that I may feel awkward and want to avoid friends and social engagements without her.  Well, my life really didn't change that much socially because Kristie had been in memory care for 7 1/2 years.  And since Kristie passed away in the beginning of the Covid-19 pandemic, concerns about avoiding friends and social gatherings weren't even an option.

I took advantage of grief counseling, through hospice services and another professional counselor who shared my faith and used EMDR therapy.  I found both counselors to be very helpful, but especially the EMDR therapy which surprised and allowed me to work through some lingering issues from 30 years before in our marriage.  I remember driving away after my second EMDR session feeling that I would be able to receive and take in enough affective light and spiritual insight to avoid darkness overwhelming me emotionally, which gave me increased hope and courage to take on life and my new reality.

Just as each caregiver's experience dealing with Alzheimer's is unique, so it is with the process of grieving and dealing with death caused by this horrible disease.  No doubt my journey will differ from yours, but hopefully anyone grieving the passing of their loved one will feel some understanding, compassion, and empathy for their loss by our shared experience.

As I have stated elsewhere, good memories are better than bad memories.  While Kristie was in memory care I reached out to her family and friends to write her life story, which I found to be therapeutic.  It was very helpful to reflect upon and document both our struggles and our good times. It helped me see that Alzheimer's is something we did together.  We were united and a team, with very different roles.  Like any battle, it wasn't always pretty, but we fought and did our best; and we were united until the end.

Readers are encouraged to share their stories, advice, and links regarding Grief After Death in the comments box below.

Resource Links

• Help Guide - Coping with grief and loss.
• Mayo Clinic - Grief: coping with reminders after loss.
• VeryWell Mind - The five stages of grief.
• Alzheimer's Association - Grief & loss as Alzheimer's progresses.
• University of Pittsburg - Alzheimer's Disease and 'the long goodbye'.
• Alzheimer's Society UK - Grief, loss and bereavement.
• Hospice Foundation of America - Grief and loss with Alzheimer's disease and dementia.
• Alzheimer's Society of Canada - Managing ambiguous loss and grief.
• Alzheimersdisease.net - Grieving the "loss" of a loved one with Alzheimer's.

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