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

My mother is 89. Her memory is failing more and more. I moved in with her to help , get her things in order, financially and legally . I'm feeling overwhelmed, not doing enough, etc. There a man that lives with her that I want out. He's not doing her right. A sibling who's staying here on ankle bracelet from jail. My mom can't say no to men. She wants to believe them, I see what she refuses to see. How do I de clutter her life . He's a hoarder and Is driving my mom crazy, but she just goes along, but I hear all the words, tears, loss of control in her world. HELP , CONCERNED DAUGHTER WHO IS GETTING DEPRESSED AND NEED HELP

This was just what I needed today. Thank you.

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!

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

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

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.

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.

says it all

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.

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.

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.

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.

I'm not crazy - thank you.

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

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!

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

I meant to say Haldon is IRREVERSABLE, not reversible.

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.

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.

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.

It helps knowing this is a normal passage.

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.

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

I have been feeling guilty, because since my husband was diagnosed with dementia, I have been mourning the death of the person I knew. This person I am caring for is not the person I married and planned on living the remainder of my life with. Slowly letting my husband go and caring for this person that occupies his body. Am I a bad person for these feelings?

No common on this article, because it was truly speaking to me tonight. Thank You.

The above words just made me cry. Mom is 91 with osteoporosis, mini strokes & dementia. I'm with her 24/7, trying care of her at my house, divorced. There is no money for some one to come in & care for her. She is at the point where it is becoming harder for her to understand & comprehend words I say to her, even in asking her about pain or food. My bigest problem is wondering how I'm going to start a new life over again at 59yrs when God does take her. I have no money left, we live off her income caring for her. Can hardly pay bills as it is. I'm just getting older myself & wonder if there will be anything left of me to start over, who wants to hire someone my age. I see no future, just get sad & depressed, getting outside, doing yard work is my relief.

I agree with "don't put a gloss on dementia care". It's not that I don't embrace the good moments, but they are few & far between, It is tempting for me to want to think that I am making a difference and that the Alz. patient might be getting better, knowing full well that it's not true.

affirming that how I feel is 'normal', and putting a name to how I feel.

It totally validated the emotional turmoil that I am personally experiencing. The advice was supportive and helpful.

This article put into actual words what I feel caring for my husband with Parkinson's..... It's difficult to see the once outgoing, socially engaged man - and the "go to" person to al most everyone who knows him ( for advice on everything from real estate, insurance, financial decisions, personal problems) struggle at times to remember basic facts. We were high school sweethearts, married a very long time, and it's hard to see myself gradually losing him......even though he's physically here. I still see the handsome Irishman I married......at times.

Knowing that the things I feel are ok!

The description provided about anticipatory grief describes exactly what I go through with my mom. She has her good days and bad days and on the good days, she responds to me understanding what I say to her and then she smiles. When she does this, it makes my day and I really don't expect anything further.

I was reminded that my efforts to stave off depression are well-founded, as depression can lead to dementia.

ST: I'm talking about peer support, not counseling, online or off. The latter is different, it requires a trained professional. Some combination of both is the best, and as I say, face-to-face is better than online.

Something lost in the reading,there. Only a fool would enter a counseling activity on the internet. I was clearly indicating an activity for those who cannot afford to TRAVEL; so that they could see and hear their loved ones, more often. at least two of us check this site. ST

A network of computers helps... i.e. an online forum like this one or others. In the end, the best is to meet with others face-to-face in a support group where discussion is moderated, and confidential, and people don't have to read between the lines, or (sometimes) read in erroneous intentions to what is black and white on the page. I've done both, and much prefer the face-to-face.

Why don't we create our own network of people with computers; that can go to visit the relatives in other cities where WE live. So that Families can have face-time with their loved ones. Reminds me of why i started in Ham Radio. This anticipatory grief has just started for me. Reaching out, has helped many in the veterans community; by helping others with our same struggles. Can i get a 'second ' for this activity??? anyone with enuff skills to help start??

I've suffered anticipatory grief over a dog. When the real end finally came (we had to euthanase her) it was even worse. It's nearly four months ago and I still get hit by bouts of grief.

I am going through this now with my mother. The problem is she is in a nursing home in PA and I'm in AZ. My dad died this past February and I am the only o

dear one of Mort was right when she said: "The article doesn't differentiate between effects on spousal caregivers and other caregivers. I believe spousal caregivers are more vulnerable to depression." Others have said that friends and family drop away, or die, many spousal caregivers do not have help in coping with their partner's illness. Not all sc's are elderly, either, there are more than a few who become spousal caregivers in their 20's, 30's (as I did) or 40's and on up. Check http://wellspouse.org for support.

This doesn't just occur with dimentia. I experienced when my husband was under hospice for 10 days when metastatic colon cancer finally took him. It was better than losing him suddenly with no mental preparation.

thanks for the support.

Get on line and join Memory People. This is a Facebook group of people with Alzheimers and related dementias, their caregivers, and people familiar with the disease. Best thing I have done. I am a caregiver to my mother who has end stage Lewy Body dementia, and this group has helped me every day. They all understand what we go thru. The above atricle helped me greatly as I am living with the slow death also. Nice to know I'm not alone with these thoughts.

Thanks so much. It was really helpful, as sometimes it is hard to understand the emotional swings.

Now I have a name for how I feel. That little bit helps since I am in an area where there is virtually no other help.

having worked in this field for many years ,I really thought I wouldnt be affectted as a novice would.Boy was I wrong,my hardest thing is letting other people help,I long to get away ,but feel guilty if I do.My sisters try an help,but they have busy lives too.And I feel guilty asking because I was the one who insisted we take her home .So I feel I shouldnt ask for help.silly that I can't take the advice I gave to so many of my patients.this site I found by accident,but I think God sent it to me.

At first I thought this wasn't comforting me since it made me cry. But now I feel much better, since I really needed to cry.

Realizing what I'm feeling is normal and valid. Knowing that this long good bye does cause my depression to be worse, my anxiety to go sky high and to feel resentment towards all the family members that are just going on about there lives without me.

My mother is not the one with Alzheimer's it my Grandmother who has it and my Mother is the care giver of both my Grandmother and GrandFather who is also sick My mother is taking care of both of them and what I just read about taking care of the elderly Has helped me so that I can help my Mother so that she can get out and start taking care of herself Who by the way has health issue herself.

My husband has dementia and I spend time crying for the man I married who is not that person now. He has lived through open heart surgery, a pacemaker and a leaking mitral valve in the past. My stepdaughter and I have recently decided that he is now a hospice patient. since his quality of life is poor. There will be no more extraordinary procedures, but he is in a facility where he is comfortable, sleeping most of the time and given oxygen when his breathing is labored. They keep him clean & feed him until he doesn't want more. I am there every day for about 3+ hours and hold his hand, kiss him and tell him I love him, which I'm pretty sure he understands. His speech is garbled, but he knows I'm there. Yes, I spend a lot of time crying for the wonderful man I married. I try to concentrate on the good times, not always successfully, but I try. It is a very difficult time now, but I do have a few friends I can talk to about him, which does help somewhat. We definitely need someone to whom we can express our grief, whether it's a friend or a group that deals with dementia. My heart goes out to all of you suffering with a loved one with this horrible disease.

I didn't understand why I was grieving even though my Dad is still here. He has dementia. Facing that my "Dad" who I went to for advice doesn't understand many simple things is gone while 'he' is still here has been difficult. It was good to know there is a term for it and that it isn't that unusual. Thanks!

There are also many of us who are caring for someone with advanced COPD and we witness and listen to the difficulty with breathing and inability to do anything anymore! This is very hard to live with and there is no real hope ; they are dying very slowly. I greive on a daily basis, although I try to never let him see it or know it. I feel he is also experiencing regret and grief for our lost lives of the past.

It is interesting to read through the responses of caregivers including my own responses over the several month period that I have been associated with this group. And I can see how much more pessimistic I am today. There are several reasons for this. For one, my group is no longer writing regularly so this opportunity for community isn't as available, then I find myself greatly affected by the political repression abroad and by the reactionary direction of our own governmental institutions. All of this is in the context of my progressively worsening husband and by the decision of one of my friends to leave this city to be near her own family following her husbands stroke. Where have all the flowers gone?

The article doesn't differentiate between effects on spousal caregivers and other caregivers. I believe spousal caregivers are more vulnerable to depression. The article also glibly goes on about the importance of support systems and here too there is likely to be a substantial difference when considering spousal caregivers. First of all spousal caregivers, being older may also be somewhat impaired. Support systems are likely to be somewhat thin due to prior death of their friends and their departure from your community to be nearer to their own familial support systems. Families may be small and unavailable. I realize that there are communities for people like us. But these may not permit our Alzheimer affected loved ones to remain with us and these communities take choices away from you as to whether you may live independently or not. Youthful arrogance and self interest dictates that a place is needed for mom.

I volunteer as a facilitator in a bereavement group for children who have experienced the death of a family member. Many of the parents or grandparents were on hospice, so the children went through anticipatory grief. I see a difference in the ones that did that, especially when the parent or grandparent had a long, lingering illness. We have another group for children whose parents died suddenly from murder, suicide, auto accident, or sudden illness. It is much harder for them to mourn because the shock is so much greater. I am presently awaiting word that my father has died. The assisted living facility called today and said "pack your bags" (he's 2,500 miles away). He is 90, has dementia. Apparently, he had a stroke yesterday and today they were not able to wake him. He's breathing, but that's about all. One of the things that has helped me tremendously, since I am so far away, is the use of Skype, the webcam program. The hospice social worker has gone to his home and let me see him via the camera on her laptop for the past several weeks. I've seen the dramatic decline in his consciousness, posture, etc. This has been invaluable, and I encourage anyone who lives a great distance from someone to find a way to "visit" them via Skype. I will not be shocked when he dies because I've seen him as he's faded further and further away. But I've been able to talk to him, tell him what I hope he's been able to hear. It's a tremendous use of modern technology if you can't be there in person. I can't say enough about hospice people. They have seen it all, and they are the most compassionate, kind, caring, and loving people in the world. They also told me that they will be available to help the caregivers at his assisted living for up to a YEAR after my dad dies. My dad will be the first person to die in this relatively new assisted living facility, and the staff has become very close to him. It's wonderful that they will help those who have been so close to him. I encourage everyone to let hospice workers help them through this process. They know about anticipatory grief as well as grief following the death, and they can be such wonderful support.

GREAT article and continual reminder. Should be shared with those who are not primary caregivers and wonder why we caregivers react the way we do.

To Lonely Wife, Your comments certainly resonated with me. I think they do know at times and that's when we see them looking really sad. Recently Mort and I were looking at some photographs that were taken in our house about 20 years ago. His coworkers had come to dinner and were sitting around the dining room table with our glasses of wine. I reminded him of everyone's name, and some he remembered without my saying. I asked him if he wished he were still with them and he replied, yes. It was a moment of shared heartbreak. Occasionally I come down to the kitchen and find that the photographs are out of their folder indicating that he had been up during the night and took them out to look at them. Sandy

I have been grappling with "anticipatory grief," though I'd never heard it put that way. It helps to know this can be a "normal" part of a process that feels abnormal. Thank you, caring.com. This is a wonderful resource. I'm grateful to have found you!

The grief is also about expectations, the death of hopes and dreams of a life with that loved one. We are not promised anything but in our hearts, we want to plan and see those plans come to fruition. To think of my life without him is just too hard and I purpose not to think to far in the future. We have no future, he has gone on without me to a place that I cannot imagine. I am sure than in those few lucid moments, he knows and is sad that all that we planned will never happen and he is sad and afraid too. It is blessed that they don't know what is happening to them, how cruel would it be if they knew. I miss him so much that my heart breaks even as I write this.

Validation of one's feelings is helpful. I'm curious about what is different in the people who exhibit anticipatory grief from the very sizable percentage who do not. This is worth studying. Perhaps there's a more positive approach to this excruciating pain than just to acknowledge that it part of the spectrum of response. Another point, I think hospice should be available earlier in stage 3. It's level of involvement can be different. We don't need vital signs measured each week. But we need someone to call when a situation gets really bad. Participation in this writing group has shown me that some of the people are dealing with aggressive behavior but have no choice for financial reasons but to keep the patient at home. Family practitioners don't know enough about the pharmacologic management of Alzheimer's to be of much help.

it put a name to what Im feeling .. How could I be grieveing .. grieving to me is associated with death.. and she is still very much alive..

Just knowing that someone knows what I and the other caregivers are experiencing. I'm surprised that only a quarter of us are depressed. I am one of them. In addition to the onset of caregiving, I also was retiring from my profession of 40 years and my life-long hearing impairment had come home to roost so to speak and I was a clinically deaf person isolated from friends, profession and husband.

This is a group for people who are caring for a loved one with Alzheimers and dementia. I'm sure there are support groups for people dealing with loved ones who have HIV and AIDS. I hope you can find the support you need there. This site has been invaluable for me, as I cope with each of Mom's phases.

The prognosis in HIV has been transformed by antiviral agents converting it from a death sentence to a chronic disease. Grieving for a loved one who died of AIDS is similar to grieving at a death in general except the victim is often young and the stigma that could be associated is likely to be burdensome. Grieving for someone who has HIV who will eventually die of AIDS needs to be sorted out by a professional. Diabetes is another chronic disease that shortens life yet we rarely hear of anticipatory grief (but I don't really have experience with this).

Well, it hit all the nails spot on . But the weepiness was hard on friends and for most of this time there was no knowledge of Caring Friends who provide a safe place and company. Alzheimer's care is very isolating and particularly so for a deaf person. For me, I began piano lessons, which have been a source of joy to hear music again, intellectual stimulation and the beginning of a new friendship with my teacher who has never had a deaf pupil before. For me she is a miracle worker. I'm not sure an antidepressant worked but I know Abilify did. However, it has been denied by my insurance. Fortunately tissues are cheap and skin regenerates continually.

Knowing that it's alright to be already grieving is a real comfort. I cry a lot, missing my Mom...the one who is already gone. Then I go visit the one who is still here, and she is so diminished that I cry all over again, once I leave. I try not to when I'm there. I don't know how much she still realizes about what is happening to her, but this is what she was always afraid of: that she would be a burden to me, and need complete care. I give it willingly, but it's very hard sometimes. Mom just started on hospice last week, and already it's been easier, because they are so used to dealing with the severe stage, and I have no idea how to proceed.

I'm helping my mother cope with my father's dementia. It was helpful to read about anticipatory grief and ambiguous loss. I try to tell her this is what she is experiencing and reading more about it is helpful.

I find the article somewhat helpful but as a person who is dealing with the Alzheimer's condition of a grandparent from long distance, it's hot very helpful. I live on the west coast and my grandmother in law is on the east coast. We only get reports as travel to her facility is not always affordable. I do have another issue I would like to see you address: Parents and people dealing with the HIV/AIDS issue. It, too, is a "long good-bye" in some cases and in others is very rapid. Please do some research and post some help for those of us out here who are dealing with the death of a child or friends from this horrible disease. Thank you.