A while ago I put my feelings in a written message about my grief of losing my loved one while he is still physically alive. I would like to share it and welcome comments as to your experience with this aspect of the "journey" of Alzheimers . I believe this is unique to this illness as it is neverending for such a long time and I have no closure.
Grief : I am discovering that grief has many avenues of sadness depending upon our loved ones stage of illness, our proximity to the loved one, their place of residence, and other factors. My little treatise on Grief is not one gleaned from research, only what I have and am experiencing on this journey with Earnie. In the beginning of Earnie’s illness, grief was experienced fleetingly and intermittently . I felt desolate at the times I realized that his memory of our years together was gone; however he was still able to function (coversing,going to activities, driving, etc.). I realize now that this sadness was not the gut wrenching grief that I would later encounter. As the disease progressed however, paradoxically as I had to be physically with Earnie more, even though he was dependent upon me more and more to be with him constantly, we were becoming more and more apart in our ability to be the companions we once were. I could no longer discuss problems, money matters, family, or anything that we used to do together. My grief at this new relationship began to permeate my thinking and the sadness became more prevalent. When Earnie’s condition became such that I could no longer be the caregiver to meet his needs, I had to make the most painful decision of my life and place him in a nursing home. That night, as I looked at our bed where he would no longer be sleeping, my grief overwhelmed me. I truly realized the depth of separation that had occurred and that Earnie and I were now on different paths of the journey. My loss was so immense and the awful realization was that I would keep experiencing various aspects of this grief for as long as Earnie lived. Earnie is adjusting well to his new environment but I am blessed “or cursed” with the understanding of what he has lost and how I have lost the essence of what he used to be. I am functioning better in my adjustment to this new path but the grief is there in my subconscious , waiting like a tiger, to pounce upon me and reduce me to a deep, deep, despair. Grief is the most predominant emotion for me and I really have found that the only way I can get some respite is to allow myself to experience it when it comes, and then to look to God to comfort me. Guilt, anger, frustration, fatigue, still appear fleetingly but the grief is a persistent sadness . I am trying to come to terms with this grief by reminding myself of the blessings I had with a wonderful man , wonderful children, and a wonderful marriage. I have good memories and hopefully my grief will be engulfed someday in the knowledge that Earnie has in the words of St. Paul and I paraphrase, fought the good fight, finished the course, kept the faith. My dear friends, I suppose I am writing this to reassure you that grief is part of the journey especially when one’s loved one is a spouse….but it too is something to confront and work through and if understood that these emotions are grief, we can then somehow find a way to function through these bad times. I am in the midst of adapting to my new life alone and the occasions of grief are debilitating but I have no choice except to go on and live a life for both Earnie and myself.
carewife, you have spoken the very feelings I also now have. Although I am still careing for my Jim at home, the grief is the same as you describe. Each time I take a trip in the car and look over at the seat where he always was, I am reminded that I have already lost him. The grief is overwhelming. It is as though I have just left the funeral home each and everyday. I wonder sometimes how much worse the grief will be when I actually do loose him.
Yes, there is no culminating focal point of bereavement here. It pretty much goes on and on waxing with rapid downhill shifts, and waning to a sort of dull presence as you adjust to whatever the current plateau is. This is one of the things I can say here. I'm kind of looking forward to the heart-wrenching process of dealing with death because the agonizing tortuous downhill lurch will be over, and I'll have something to process. Who ever imagined being in a position to think such a thing?
Emily, I agree with you.... It seems like I have been watching my husband die for over four years now, ever since he became bedridden and unable to talk, move, etc. The seemingly never ending process is really tough. I have caught myself referring to him as being dead in conversations...I will say something like...."if Butch had lived, we would have..." then I catch myself and go back and "fix" the statement. But, in all actuality, he is gone. I am just caring for his body until he is through with it. So many lessons to learn with this disease.
emily, I feel exactly the same way. I wish it was over and then I say to myself how could Ifeel this way. I feel like a very bad person to have such thoughts. Sandi, I agree with you. The body is all that is left. I have told Jim's family that, it seems as long as they see a person they just do not realize that inside he is no longer here.
Grief is one of the main things I wish people could understand about dementia. But since all they see is the physical presence of our spouses, and not the day-by-day losses, they don’t really “get it”. I feel like I’m doing all my grieving alone. And unlike when somebody dies, there are no flowers or cards or people saying nice things about your loved one, or asking how you are doing. And it goes on and on. And this grief is compounded by the fact that my husband so far has been heartbreakingly aware of all the changes he is going through.
I found a really good book about grief: “Share My Lonesome Valley – The Slow Grief of Long-term Care” by Doug Manning. This book really helped me, because it made me realize that what I was feeling was reasonable for this situation, instead of because I was neurotic or I wasn’t handling things well. I have about 20 markers various places in the book, with things I thought were really good. I really recommend this book for any caregiver who is trying to deal with grief—and isn’t that all of us?
Yes Jan, that's true and something I've noticed. The groundswell of support and compassion that happens when, for example, someone loses a spouse to actual death. And it's totally appropriate, and should happen, that communities reach out and support during these life crises, but it does feel a little ironic from our standpoint in that--by the time death actually occurs, and people offer that kind of fellowship--well, most of our grieving will be over...spread thinly and thickly over the last decade or so when "nothing remarkable happened" from the outside community's point of view.
The inexcusable loss of friends and to some extent family, who are not able to accept Cindy for the loving, caring, beautiful person she is instead of only seeing some one with Alzheimer’s that they are uncomfortable around sickens me. I have made the decision to have a private memorial service when she is gone as opposed to an “open” funeral. This way those people that can’t (or won’t) spare ten words with her now won’t show up and gush all the niceties about “what a shame this is”, and “we’re going to miss her terribly”, et al. DickS
Dick S, You have expressed this so well. Even given me a new thought on just a private funeral. That is what it should be, if people do not want to come around now, I do not want them around when it is over. Maybe I will make some people upset, but then if these are friends no one has enemies. I am having very serious thoughts in this direction. You have made me stop and think.
I just added the book you recommended, "Share My Lonesome Valley – The Slow Grief of Long-term Care” by Doug Manning to my Alzheimer Book Store- It is listed as this week's featured selection on the front page of the website. If anyone would like to purchase it, they can click on The Alzheimer Book Store by Amazon.com on the left side of the website. I read the Amazon review of the book, and it sounds like the author really understands what I call grief before death. We grieve for YEARS while our LO is still breathing.
I have ordered the book "Share my lonesome valley..." from Amazon and can't wait to get it. Also, "Coping with Alzheimer's...A Caregivers Emotional Survival Guide" by Rose Oliver, and "The Alzheimer's Caregiver Sourcebook."
I have had the 36 hour Day, for months. I have tried to start reading it, but it hasn't captured my attention yet. I have heard from others that the book is sometimes hard to "get started." But when the time is right, it will.
Wow. I thought I was the only one who was thinking that way about a private funeral. Thanks for your thoughts on that. When the time comes, I don't want to share my grief with people who don't care about my husband while he is alive. It helps to know that other people have the same feelings about this.
My husband has four children. His daughter agrees to have him visit in her home for a few weeks, but we have to get him there, thousands of miles from our house. Oldest son has advised that he can't handle the AD situation and we will not be hearing from him EVER again. Youngest son, who also lives across the country calls at Xmas. We used to entertain, have guests at the cottage, get invited for dinner or to take trips together but that's no longer happening. Few friends drop in for short periods of time. We have two good and loyal friends . Unfortunately they too live some distance from us. It is indeed a lonely road. It's great to be here among friends.
Anna I need to go now have a 1 pm appt.; but need to send you fast and big hugs. This is so sad. Breaks my heart. Don't these people realize; now is the time we need them most.
I've been taking care of my wife since 1999 now and in the beginning she was originally diagnosed with depression because she was let go from her job of 24 years as a municipality bookkeeper/treasurer. As time went on, we heard an addition to the original diagnosis of depression to depression and the possibility of Alzhiemer's.
It wasn't until 2004 that she was taken by my son, who lives in North Carolina, to go to a memory assessment clinic run by a North Carolina state known doctor. After her being there for nearly 2 weeks with my son, I joined her to go to the clinic with her. The exact diagnosis was Progressive Cognitive Impairment compatible with Early Onset Alzheimer's Disease. Her age at the time of this diagnosis was age 60. And I guess the hardest part was that they could do nothing but delay the disease.
Upon returning home I noticed that she was no longer capable of doing the things she used to do before she left for North Carolina. She used to dress herself, fix sandwiches for lunch, make coffee thoughout the day, bath herself and brush her own teeth. I found that she could no longer do the things she used to do without assistance.
Having the internet available, I immediately started searching for all the information I could find about Alzheimer's. I found one site early on that had a caregivers handbook which I downloaded and began to read. In there were the symptoms of Alzheimer's. I checked off the symptoms that I saw, and looked over what was to come and asked myself "how will I handle the different symtoms as they started to appear"
I can tell you that from 1999 to present, I have had a roller coaster ride regarding emotions. I would guess that the grieving process started along with the frustration, the sadness, and the anger. To see how this disease progresses is literally heartbreaking. To watch my wife go from what she was to what she is today is so hard. At present time she is about stage 6/7.
Although it's been difficult for me to watch, I feel fortunate than most. She and I were both in the military (although not retired from the military) and were able to get involved with VA benefits. Her and I have our primary doctors though VA and she has her female doctor and neurologist though VA. She gets all her perscriptions also from VA. And even now, we have a caregiver coming in 4 days a week for 2 hours a day, paid for by VA.
Before she was even diagnosed, I had applied for and gotten Social Security Disability benefits.
Still with all that, as I watched her decline over the years, each time a new symptom showed itself, It was like a peice of me was dying along with her. Today, she is still able to walk and climb stairs (we live in a 2 story home), with assistance. She is still able to talk, in her own way, but lengthy conversations she gets lost.
I like others here have seen old friends and relatives disappear. Our own daughter, who lives local, only visited her once in the last year. I have not been able to convey to her the importance of her visiting her mom when her mom needs her the most. As cold as it may seem to some....I have already resigned myself to remove her from any will, and unless things change in the near future the only way she will know what her mom's condition is, is when she reads about it in the newspaper. Naturally, there are other relatives and, so called, friends who will be furnished the same info at the same time. My phlosophy is, if you don't have the time to visit her when she is alive, then you have no business visiting her when she no longer needs you.
Watchman, So so so very sad. It is so hard for me to imagine what that would be like from a daughter of our own and friends; what are we here for but to love one another and be there for each other. My heart breaks for you and your LO. What is it with people ? We have it so good in the USA, could be so peaceful; and yet we mess that up by not caring for and loving each other. And it is so much easier being nice than ugly to each other and yet you finally get out of the house, driving down the road and someone cuts you off ; or in stores and on the telephones; answers you rude or act like you are bothering them. I still feel alone alot and I do have two supportive grown children, their spouses, grandkids and a couple of longtime friends and I thank GOD for them. But I am hurting for you, Anna, DickS and all those for don't have enough of your family and friends to surround them with LOVE. God Bless you all and I will pray that they will realize before it is too late.
I haven't been in here in a very long while.. But so much of what I am reading I think YEP ME TOO ...Our son moved back to the area a couple months ago. In a conversation DH told him he was worried my brother would take his tools after he was gone. Basically steal them from me..Now there is some reason for this BUT this is the kicker our son tells me that he told his dad well if you are worried dad just put it all in my name...I FLIPPED OUT !!! Now our son is such a dumb butt he tells me this in the grocery store and I looked at him and said no matter what those TOOLS are just as much mine as your dads and IF this crap is going to start now you can stay the he%% away.. I was angry and hurt and felt betrayed as well...My husband is in about mid stage . He is currently 54 and was diagnosed when he was 50.. Sorry for going on but oh I was just ticked...My husband and I have been married 23 years. we have a great marriage well you know what I mean. He and I didnt have problems..Now well it seems he is always thinking I am going to get tired of him. And the sex thing he I dont even hug him as one gentleman said it just sends him to orbit. LOL And I dont want to give mixed messages.. Renee
I don't know where I was on February 2nd, when you wrote the first post about grief, but somehow, I missed reading the whole thing. I just read it in its entirety. You described everything perfectly. When someone dies, it is final. We grieve for them in our own way on our own timetable, and although we never forget them, we do go on living. With Alzheimer's Disease, they die in pieces. Everytime another part of them dies, we feeling overwhelming grief. If we manage to get through that grieving process, another part of them dies, and we start all over again. And again when another part dies, and again, and again, and again. Is it any wonder we are emotionally shredded at the end of this miserable disease?
Joan, you have described the grief from watching a loved one die in pieces in a way I could never express. I have copied it to send to my friends and family so they will understand.
As a new member to Joan's site I have spent some time reading all the posts as I get some comfort knowing I am not alone. This discussion has really hit home with me as I watch my beautiful wife ceace to exist. I have informed all her family and our friends how dire her situation is becoming and that she could use some contact from more than just me. Just so all will know Mar is 56 years old and rapidly declining in stage 7 alzs. We live no more than 2 hours from all of our old friends and family. Up until 2 months ago I used to travel to see Mar's mother who is old, but she can't travel more than 1/2 hour now. We have received 2 visits from one sister and none from our friends. I watch and cry every day as she declines and pray that just one person would care enough to come and visit with her, but no. The grief that I feel daily is unbearable but worse is the non caring from friends and family. I was just thinking of the same thoughts regarding the day she passes and not wanting to see any of them. I find this a sad way to introduce myself to the forum but am having very strong feelings about this thread.
Welcome to my website. Never apologize for any of your feelings, whether they are sad, angry, resentful - we understand.
You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
It is late, and I am going to bed. More members will be along tomorrow to welcome you. I am putting your name in the topic - Welcome New Members at the top of this page.
Welcome, selwynfarmer, I'm sending cyber hugs ((((H)))) and prayers for comfort in the journey. You and your dw are young for all of this. It's doubly tough, I think, when family and folks who've been friends cannot or won't be supportive; so I pray for them, too.
Selwynfarmer - greetings and welcome to an aweseome site. I share your challenge. My sife is 53 diagnosed 2-1/2 yrs ago and is now late stage 6. I've posted our situation several times on other threads so won't repeat it in detail. Nutshell version: DW's older sister lives 20 minutes away, brother 15 minutes away and younger sister several states away. (Parents passed away) No visits, calls, assistance....... zip. Her very close friends of 30 years - same thing. Disappeared. Requests for help resulted in such hurtful replies and phony excuses I decided it wasn't worth asking anymore - so I don't. I have to assume that those ignorant of this disease for some reason ASSUME it is communicable so keep their distance. I am very grateful my mother and sisters are willing to help any time I need it. My advice is don't waste your time on this - you can't change it. Your time is better spent assisting your wife. Best of luck and, again, welcome. Thenneck
You couldn't of described my grief any better. This is my husband's last holiday at home. I am placing him in an ALF after the 1st of the year. Thank you carewife.
I decided years ago not to have a funeral or memorial service. We have lots of acquaintances but no friends. His brother has always called him on his birthday (or within a couple weeks of it), his younger sister has AD too (use to call every couple weeks but haven't heard from her since September), the only ones that have contact with us are my siblings and our son that lives next door. Our daughter only calls when she needs money but since we don't have any her calls are getting sparser. I hate funerals where people show up who have not been seen or heard from in years and act like they were best buddies - I don't want that for either of us. I have often thought it would be fun to have a service, see if anyone shows up, then let them have both barrels about what hypocrites they are.
Dear Selwynfarmer, Welcome to this site. So good that you have found this wonderful place. It is so true that there is immense comfort in sharing your grief and experiences with others, even if it is at such distance. Thank you for sharing your story with us. So sad about your dear wife. Please continue to read and tell us more about yourself and Mar when you feel ready.
Maybe I'm walking beside my shoes here (or is that just a Dutch expression?) but I do want to appeal to you and all others who are so sad that their friends and family do not visit: try one more time, send holiday greetings that add an appeal for company, explain why you and your LO need it. I am probably lucky in not having had this problem but I must admit that I have been very open in my appeals to others for company, and on the whole, they have responded. Yes, some that I wouldn't have expected if of, have dropped by the wayside. But I think I will just call this one couple I am thinking of and invite them over for coffee.
Selwynfarmer, you have definitely come to the right site. I'm relatively new here as well. My wife, 63, is still passing from early to moderate stage AD, but she has already commented about how people seem to treat her differently once they know she has AD. Whereas this site is absolutely wonderful, you should also see if there is a support group nearby where you can meet regularly with others to share your feelings. I attend a weekly support group and they have become wonderful new friends for me. Please continue to vent your emotions here on this site. A lot of people will be pulling for you.
Welcome Selwynfarmer, there are alot of topics here that arent very pleasant and will hit home as well. its wonderful to have a sounding board to put things into writing and know others will feel the compassion and take enough time to respond with something of comfort even if our own family/friends do not. indeed its tragic we lose those around us on top of our spouses. i also agree a local support group will not only help for comfort but give you some new friendships that understand the issues at hand. welcome, hope to see you posting again - we never apologize for our feelings as its therapeutic to release them-. divvi
Hi & Welcome selwynfarmer, I am sorry for you need to join us, however, you have found a great place to land. My husband is 58 years old, suffers from Frontal Temporal Dementia (FTD) his memory started declining at age 50. He is in stage 6. Please feel free to post at any time, someone will always answer.
I feel like I need to report that this will be my last time to write. My wife of 66 1/2 years passed away October 28, 2009. Almost 4 years exactly since our battle with Lewy Body Dementia started. I was able to care for her until July when she took a turn for the worse and I had to put her in a nursing home. Then about two weeks before she died she got to where she could not swollow and unable to take medicine or food. Finally on that last day she just slowed down her breathing and then stopped. I have been very fortunate in that she never caused me any trouble and was always pleasant to me and other people. The Lord has blessed me with wonderful memories and the fact she looked very pretty and had a wonderful funeral service. She would have been 84 Christmas, We had a great life together and I feel like I should feel grief but somehow I don't and really thankful that she did not have to lay in that bed for another year or two not knowing anything or anybody.
Bill, I am so sorry you have lost your dear wife but I am sure she is in a far better place and that you have accepted that she is now at peace. God Bless.
BillH, sending heartfelt condolences on the loss of your beloved wife. thats a very long time to be married and we know how hard that separation must be for you. if you can let us know how you are at some point in the future, blessing, Bill. divvi
Bill, my deepest sympathy on the loss of your wonderful wife. I know exactly what you mean about not feeling grief....I am so happy she had such a peaceful passing. Blessings to you and your family......
Bill, I send condolences. In 66 1/2 yrs you've collected many memories to sustain you now, I'm certain. You've been a blessing to her in this dementia struggle. Smile now and enjoy what life has to offer.
Bill, you did a great job caregiving and I am also glad she did not have to continue laying there suffering. I understand about your feelings, because I felt the same when my Mom passed a year and a half ago. But, do continue to post occasionally and let us know how you are doing. Put an asterick after your name and there is a thread for widows and widowers at the top of the page.