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.
Holly C Barker 
What a living nightmare. This too will pass…
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All you can do is do your best and when this is over you can look at your self and say I did my best and honestly he knows that you are doing the best you can I too lost my husband in June I was working two full time jobs and much less they are I two different hospitals I had to work the two cause the insurance did not want to be without insurance any way I had quilt cause I would see patients with similar stuff going on and I would say to
My self I need to be home 🏡 with him
He always was so sopported to me and say you need to work for the family.
I look back now and can honestly say I did the best I could
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Beautiful. Yes you did.
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I’m so sorry for your situation. My name is also Deborah ( although I go by Debbie) and I lost my husband in February 2015 after a 13 yr. battle with end stage renal disease. A result of uncontrolled diabetes and the “cure” for hepatitis C. , ( interferon) He was 44 yrs old when his kidneys failed and he started dialysis. But as time went on he became weaker and less able to do things and care for himself. Eventually he lost the sight in his left eye and the right one was getting worse. About four years ago the pain in his left eye was so intense the Drs had no other choice but to remove the eye. But he was a fighter. He still attended church with me every Sunday. He led a bible study group at a local convalescent home. And worked with men recovering from alcoholism and drug addiction. Fortunately we received SSI and Medicare took care of the costs with my insurance picking up the rest. He stayed busy as he could and during his last year seemed to be in better health than he’d been in a long time. Feb. 14, 15, and 16 was a 3 day weekend from work.On the 16th, I went out to the laundromat and had so many loads I didn’t get home until 1am…I was upset with him that he didn’t come to help me. But he said he was exhausted. He slept on the couch that night.( He would sometimes do that when he was having trouble breathing) The last time I spoke to him I was on my way out to work at 5:00 that morning. I told him I loved him and left. I don’t know if he heard me or not. That day , Feb. 17, 2015, he suffered a major heart attack as he boarded the bus to go to dialysis. He lived another 5 days on life support but never woke up again. He died Feb. 21, 2015. He was 57 years old. There’s more but I never intended to go on this long. I am so sorry. But I just wanted you to know there is hope. I know I did all I could. Work with the social worker and insurance people at the hospital or dialysis center. Ours worked everything out so I never had to come up with any money out of pocket. That doesn’t mean that it’s been easy. Since he died my house has been foreclosed on and I filed bankruptcy. The church has been very supportive and don’t know how I could have gotten through without my faith in God. I used what was left of the life insurance and money from folks at church to buy a Mobile home and a decent car. I’m still working on getting better organized and miss him everyday….but its no longer paralyzing. I wish you well. Thanks for this site. Next time it will be shorter.
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