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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