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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Acceptance

 

Acceptance

It is the basis of healing. The ground floor of the elevator. The floor of the elevator comes to stop, you hear the bell “bing”, and the door opens. Your new reality awaits you. You step out and the sun is shining so brightly and you have trouble focusing. You feel a little confused and disoriented in terms of where you are now. You look around and start to orient yourself to this new view.

You know you’re in a building and you know you are okay. You are breathing and you can feel. You can see your hands and hear your voice. Life is not over for you. Your life is now different. 180 degrees. A paradigm shift in thinking has just arrived at the door of your mind. You realize your choices are now yours to some extent. You own them as they are not shared with the person who is not leaving with you out of this building. It is hard to leave because you came in together, and now you are leaving by yourself. But you do it. You do it because you have no choice. Acceptance is the key here. It is the key that opens that door to your mind to allow the paradigm shift in thinking to take place.

I accept what has happened. My mind is full of gratitude, love, and peace. I am going to allow some space for grief and sadness and I will give it away at the end of the day. I will breathe it out. It will not take root in my mind and leave me stuck in one spot. I am moving forward and looking ahead at my life. I have so much to be grateful for. Jackson. My home. My community. My friends. My family. My job. My health. My strength and new understanding. With acceptance comes healing. With healing comes happiness.