Anticipatory Grief: How to Cope With the "Living Death" of Alzheimer's

For many caretakers, daily care isn't the worst part of dealing with Alzheimer's or other dementias. Grief is.
anticipatory_grief_and_alzheimers

What is anticipatory grief?

Anticipatory grief is the emotional pain of losing a loved one, felt in advance of the person's death. It's a common phenomenon among those who care for the terminally ill.

It may be experienced at any time by any one connected to someone with Alzheimer's, but it's especially common at the middle and late stages of the disease.

Why Alzheimer's caregivers are vulnerable to anticipatory grief

Good-byes are always painful, and Alzheimer's is the ultimate "long good-bye." Anticipatory grief is rampant, and perhaps inevitable, among Alzheimer's caregivers because of the slow, progressive, and incurable nature of the disease. University of Indianapolis researchers asked more than 400 caregivers the open-ended question, "What would you say is the biggest barrier you have faced as a caregiver?" The majority -- more than 80 percent -- referred to the loss of the person they used to know.

The friends and family of someone with dementia experience two difficult psychological states at once:

  • Anticipatory grief, or coping with the very real feelings of loss for someone who is still alive
  • Ambiguous loss, or interacting with someone who's not fully present socially or psychologically

That's a tough mix. Little wonder that more than a quarter of all dementia caregivers suffer from depression. They're in mourning even as they're still doing the hard work of taking care of someone with a difficult disease. Depressed caregivers, more than other depressed people, tend to display symptoms that center on sadness, lack of hope, and guilt.

SEE ALSO: Find Memory Care Near You

What you can do when anticipatory grief strikes

  • Know that your feelings are normal. It can help simply to know that anticipatory grief exists. Just because the person you're caring for still lives doesn't mean you don't get to show dark emotions. There's no need to feel guilty for experiencing these difficult feelings. Nor should you hold them in.
  • Understand that it's "real" grief. A 2001 study in The Gerontologist deemed anticipatory grief equivalent in intensity and breadth to the response to death. The odd silver lining: anticipatory grief prepares us for the end. It's a long, slow, painful warm-up, but it's a warm-up, nonetheless.
  • Don't try to put a gloss on dementia care. Many caregivers wax poetic about those unexpected "I love yous" or sudden bursts of clarity and gratitude. They're fulfilling and should be embraced. But the rest of the time -- well, there's the rest of the time. Don't beat yourself up if you struggle with some aspects of caregiving.
  • Be nice to yourself. Grief (anticipatory or otherwise) puts you at risk for depression. Depression puts you at risk for dementia yourself. How to end this vicious cycle? Start small -- enlist a regular volunteer or paid aide to take over while you do something positive for your own health, such as working out.
  • Rely on a support network for an emotional outlet Long-term studies have found that Alzheimer's caregivers who receive counseling and support, formal or informal, have better health and a lower incidence of depression. You may feel the need to put on a "brave face" in front of the sick person all the time, when expressing your conflicting feelings is what would serve you better. A support network lets you do this. Venting on paper -- writing about your feelings -- can help during those moments when you can't see someone face to face.
  • Tap into hospice care . Enlisting hospice help as the person in your care descends into end-stage Alzheimer's isn't, as some people mistakenly believe, a secret death wish. You can't control the timing of the end. But it does come eventually, and you deserve the skilled guidance that experts in this passage can offer you, even if it's still months (or more) in the unknowable future.

9 months ago, said...

Thank you immensely for this article. Didn't know what anticipatory grief was, but, my feelings of doom and gloom as my elder brother's caregiver, struggling with Alzheimer's, now has a name. I also realize there are many who share those same feelings. A strong team is a necessity especially as this terrible disease progresses; a break from the duties involved, even if it's not every day; someone to share your feelings with, if needed a professional; and you can't forget about taking care of you, minus guilt, while on this journey. Books, movies and seminars may fall short, yes knowledge is still a good thing, but each day or moment may be different. Be strong, take care of you, believe in faith and prayers. Love, family and memories matter to me. God Bless All Caregivers!


about 1 year ago, said...

Wow, what a good article. I've noticed this feeling for a long time. It's helpful that experts acknowledge it exists.


almost 2 years ago, said...

gorilla guard, you have all the right words, feelings and answers to what needs to be done. I am working toward that.


almost 2 years ago, said...

My wife has been in a secure Alzheimer's disease facility for almost a year now. I must say that the "heavy lifting" of caring for her at home is over. But I remain involved in her life on a regular basis. Her place is not far from our home and the management and staff allow loved ones to visit any time unannounced. She always is glad to see me and yet when i leave, she does not complain....so go figure. We have some semblance of a relationship in that I can participate in the activities offered at her facility, go along on supervised outings and be active in her life even though we are on different ends of town. After very strong encouragement from all of our four "kids"....all fifty something, I have sought help from a professional counselor. They were correct. The counselor is not a friend, not a family member, but a a person with training and the skill to help me stay focused. She told me that the feelings of guilt are not surprising and that it is also OK to enjoy a fulfilling life again. I am trying to do this with a good bit of success. Still, I miss having my dear wife around. We humans have a tendency to remember the good stuff. Our minds are truly amazing. Thanks for the hugs...I wish they were real ones.


almost 2 years ago, said...

This article is great, and I really like how they say things. I still have problems. I work full time, and am the "Care Manager" for my Father. If I go see him during the week, I end up sleeping 12 hours or more that night. I guess it makes me so sad to see him starting to slip away. His lungs are filling with fluid, because his kidneys are failing. He wants to live to 100, he's 93 now, but his body is not going to make it.


almost 2 years ago, said...

says it all


about 2 years ago, said...

Thank you so much for this. I needed to understand why I cry every day as mom deteriorates into the final stages of Alzheimer's. I think the hardest thing has been that we can no longer have a chat, no conversing, no laughter. I thank God every day for the Hagen Memory Care Center at Penney Farms, Fl. and the wonderful staff there. I was unable to keep mom at home because I am disabled. Grateful for lucid moments of clarity, and hoping she can maintain for a little while yet.


over 2 years ago, said...

Knowing that feelings of grief are "normal" for caregivers. For the past 5+ years being almost a 24/7 caregiver to my wife, I did not think much about grief. Laundry had to be done, meals prepared, the house kept clean, the yard kept respectable. Recently, our situation got so out of hand that I had to act and get the love of my life into a secure AD facility. So now I no longer have to do all this "stuff". I still cook and take care of the house, but someone else now takes care of her personal needs. For this I am grateful and yet have pangs of guilt saying that I could have held on a little longer, done more. I fight the guilt feelings mentioned in the article. Fortunately, my support here keeps me positive and, like the article, tells me that I am going through a grieving process, even though my wife is very much alive...but a victim of a relentless disease..no one's fault.


almost 3 years ago, said...

Recognizing that my grief/crying over loss of who he used to be is normal, though I am not depressed, as my husband is in full-time care.


almost 3 years ago, said...

Just the acknowledgement of "anticipatory grief." I went through this (what I called "pre-death mourning") for at least a year before my father died of emphysema (amazingly, he was mentally sharp until about 24 hrs. before his death) and have been experiencing it for several years with my mother who has dementia. Caregivers should be educated on this "normal" process, as I felt I was a little odd for feeling in mourning before my father's death, and then a sense of closure and relief afterwards.


almost 3 years ago, said...

I'm not crazy - thank you.


almost 3 years ago, said...

Wow! Wish I had known about this article 5-6 years ago! What it could have saved me from doing! Great article!


about 3 years ago, said...

Thank you for this article. I feel so much better knowing that how I've been feeling lately is normal. I appreciate your web site so much. Thank you again!


about 3 years ago, said...

Grief starts before the dying .It's Okay ,to not be there all the time .


about 3 years ago, said...

I meant to say Haldon is IRREVERSABLE, not reversible.


about 3 years ago, said...

I totally disagree with you concerning hospice. My soul mate's kidneys were perfectly normal, UNTIL a hospice nurse convinced me to allow her to give him a drug, Haldol, that they use for "anxiety". She said he was anxious but knew we opposed drugs because of their side effects. She led me to believe it was merely for anxiousness, like a tranquilizer, so convinced me to let her give it to my love. She never told me of the side affects . They are reversable and harsh. It slows down the organ functions in the entire body and was a drug previously given to violent mental patients to calm them, until banned for the damage it did to the patients - Renal failure, coma and death!!! She knew we were still fighting for a cure, but she gave him this IRREVERSABLE drug anyway! it shut down his kidneys and he died 24 hours later! He had no kidney problems up to that time! I will never forgive this nurse, or the nurse who saw him the next day and gave him more morphine without my permission! As a result he couldn't respond to me or speak. We couldn't say goodbye. They played God. I am going to broadcast their actions to the world. They robbed us of the peace of saying goodbye after our 20 years together. That drug has been banned in psych hospitals due to the severe damage it did to patients. WHY THEN is hospice using it? It's outrageous and I intend to get it banned and let the public know what happened. They robbed us of precious time - I believe their actions quickened his death and destroyed his kidneys prematurely. I will not rest in peace until I do something about what they did to my loved one.


about 3 years ago, said...

I have been feeling these " loss of my husband "slowly and the conversations I can no longer have with him hurt me so much! I try to get a laugh and he says to me smile!? In the beginning I nor him realized what was happening so conversation was so limited (fear) for us both. I must reach out to others for my own mental health.


over 3 years ago, said...

Just mentioning that the stages of grieving may not come in a specific order. My mother had Alzheimers and after her passing I expressed to one of my siblings that what that I felt that I hadn't done enough as the caregiver. The reply was, if you had known what to do, you would have done it. It really set me free from some major feelings of guilt.


almost 4 years ago, said...

It helps knowing this is a normal passage.


almost 4 years ago, said...

it gave me an "OK" not to be so "brave" and to ask for support. it feels as though i have lost my soul at times. i miss my mother so very much. i am very depressed and medication doesn't help. i live in a different state than my mother and family and have not wanted to see any of them or talk to them.


about 4 years ago, said...

Just to have it written that the feeling of greif that I'm having are normal.