Anticipatory Grief: Debra’s Story

This is a story Debra shared with me about her own experience with Anticipatory Grief.   Thank you Deb for sharing your caregiver journey with us.  We need to bring this real experience into the forefront so that we may all know what many of us really experience and that we are not alone.  We are misdiagnosed.  Not informed. And support for this type of grief is often nonexistent. Please share this with others whom you know are caregivers of very sick or terminally ill people so that they know of Grief Anonymous.  We stand with them and are here for them.  ~Holly Barker, Founder of Grief Anonymous

My husband has been ill for the last 14 years. The past 9 months or so he has been either in the hospital, Transitional care or a nursing home more than he has been home. His prognosis is grim but he is a fighter. Unless you are or have experienced it I don’t think anyone can quite understand or appreciate the work & stress involved. For the past two weeks he has been in a hospital that is an hour from our home. Two weeks before that he was in a hospital that is about an hour and a half away from home. I am not old enough to retire so I try to juggle work, home and his needs. There is something so wrong with our society that there aren’t better alternatives than nursing homes. I can’t afford to just stay home on FMLA without money coming in. I also need to keep our health insurance. My spouse also is not of retirement age but due to end stage renal disease he is able to receive disability & medicare (which we do pay for) as a secondary insurance. He has lost his eye sight & has many physical problems. He needs full-time care and I think his needs are best served being cared for at home. Some of his problems have been caused by poor care in a rehab facility & he was only there for 2 1/2 weeks. What do people do? I am at a loss. I have contacted different state agencies but so far they just say they are sorry there really isn’t anything they can offer. I suppose if you could afford to pay someone to come into your home that would be one solution but that’s not an option for us. When I saw one of the articles about anticipatory grief – I had never heard of such a thing in my life but I now have a “name” for exactly how I feel.

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Saying Goodbye to A Friend for the Last Time

David,

I am so sorry you are looking at losing several friends in a very short time span to cancer. This is very difficult I know for sure. I was privy and witnessed the goodbyes that Jordon made to his friends and his friends to him. I watched their disbelief that this was happening and their sinking hearts when they said goodbye for the last time. It’s an odd feeling physically walking away from a life long friend knowing you will never see them again. The last hug goodbye. The last look in the eye. I know my dear friend. But what I want to tell you is the instantaneous connections that my husband put out to all that he loved after he passed. He visited them in dreams, whistled soft winds over beer bottles in backyard quiet evenings, woke them up and energetically shared some wine with them. Found himself into locker rooms with his friend’s children showing up as his favorite team number. He came through in the form of water and energy and Light. And lastly the night he died, he sent me an email. His words that night were:

Write it down
Write it down, Holly
Write it down.

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Your connection has not ended and will not end with these wonderful souls who are going out too soon for our liking. But just know the connection will never be broken. Never severed. Always cherished. Always loved. And most important while you are in this world and they have moved on to the next~ always connected.

 
Just know I’m here for you, my sweet friend. I love you and so glad you came into my life when I needed you. You were by my side then, and you are today. I wish you peace and comfort for your pain over those you have lost and those you are losing. And know you always have me, as your friend by your side.

Love,

Holly