Several days ago Myrtle posted a link to a New York Times article called "A Grief So Deep it Won't Die".
The article talked about "complicated grief", when people sort of get "stuck" in grief, and after a number of years have not been able to move on. (There was some difference of opinion on how long one could be "stuck" before it meant there was a real problem.) I had already known that dementia caregivers were at risk for this kind of grief, partly because many times we have to give up nearly everything else in our lives in order to deal with all the things caregivers have to do, so we have very little left to rebuild a life with when our spouses die.
Today something else struck me. I think that--at least in my case--this "complicated grief" started right at the beginning. When DH was diagnosed, and we realized what this disease would do, and that it was terminal, I cried for weeks. I mean, I cried all day. There really was no lessening of this grief, no time to heal--it's just that very quickly I had to get up and function, and take care of DH and run the household and coordinate medical care for DH's increasing medical problems. But year after year I still grieved, and missed the husband I used to have.
Of course dementia caregivers are more at risk for complicated grief! By the time of the death of our loved ones, we've been grieving for years, or even for decades. We've been "stuck" in a situation that depletes our physical, emotional, and financial resources. And we're not given the assistance--like bereavement support groups--that is provided to other people who grieve, because officially we have not yet lost our spouses. Nobody brings us a casserole or sends flowers or a card to help us with our grief. We may have to deal with people who don't understand that our spouses are terminally ill--or that they're ill at all. We may even have to deal with doctors or family members who tell us that we are the problem, not our spouses. (Imagine someone saying that to the spouse of someone with cancer or heart disease!) Meanwhile, we see every tiny loss, and grieve for the person our spouses used to be and the life we used to have. And often we live through one medical crisis after another, wondering if this will be the last few days we spend with our spouse.
If we don't talk about how this disease impacts us, people think there must not be a problem. And if we do talk about the impact of the disease, people run for the nearest exit. So we are left alone to deal with everything, and to grieve for years before the final loss--and then endure even more grief.
Why is it that almost the entire medical community, as well as the mental health professionals who are supposed to help us, have no idea that caregivers are dealing with grief for years before we lose our spouses? Maybe the impact on us wouldn't be so severe if we could get the same help and support other grieving spouses are given. But for the most part, we are left to struggle along as best we can. In my case, that best is not very good.
All I can add is AMEN! I agree with everything you have said. So many times I have wished my husband had a raging terminal cancer because we would have had so much more love and support all along the way. No one would have ever dreamed of turning their backs on us in the midst of a "socially acceptable" disease.
So glad you started this thread, Jan K. I have been trying to find a grief counselor who knows about ambiguous grief for months now. I contacted our Center for Grieving, but death is a prerequisite for attending. I contacted a mental health professional I know, but he came up empty-handed. The support group for the Alzheimer Assoc merely acknowledges the grief; it is all the group can do to get through everyone's story during 90 minutes and unfortunately I don't find it very helpful. I am stuck with this tremendous loss/not loss that is not acknowledged by society. I have so many symptoms of grief and seem to be sinking from the weight of it all. I don't think the medical community understands this sort of grief, and I don't fault them for it. The only people who get are the ones who have been on this road. There must be some way to access professionals who deal with ambiguous grief. I would welcome any suggestions.
I read a book by Pauline Boss called " loving someone with dementia" she is phycologist and wrote about ambiguous loss and I learned so much from this book about the very subject you have talked about. I often wish I had someone like her to talk to but no one is available to caregivers, just no one. I get kind of upset when I am approached by volunteers canvassing for cancer or any of the high profile diseases. I wish we were cared for as well. Then I feel sad that I have started to feel this way. We all need help but how do we get left out?
Oh, my, Jan K, did you ever hit the nail on the head. Speaking from experience, it is very difficult to find a therapist, psychologist, or counselor who TRULY understands the grief of an Alzheimer Spouse before their husband/wife dies. I went through a few really useless ones. As everyone knows, I was lucky in that when Sid first went on Hospice last year, their social worker saw what a wreck I was and turned me over to one of their best grief counselors. She literally saved my life. Even though they took Sid off of Hospice after a couple of months, I was allowed to continue with the grief counselor because it was funded by private donations, NOT Medicare. I continued to see her all through this past year, when Sid was still living, and am still seeing her now that he has died.
For those grieving a living spouse with Alzheimer's Disease, I would suggest trying to get a Hospice grief counselor.
Getting left out; a lot of this comes from the way psychologists, social workers and counselors are trained. Most training in grief is really training in bereavement and mourning. Some hospice's separate their counseling clinicians into working with families before and after death, but certainly not all.
The NYT article was interesting. I really wanted to find the inventory they used for participation in their program. I think they called it a scale in the article. Finally I found it at researchgate.net. It seemed to me the article did not go into a lot of detail about the treatment. Quite some time ago Vamik Volkan initiated an approach called "re-grief". This therapeutic approach is covered in "Treatment of Complicated Mourning" by Therese Rando. It seems similar to what was described in the article.
Ambiguous loss before death is treated like a specialty within a specialty- or it can be anyway. I searched some websites about finding a therapist. One was adec.org, it is the Association of Death Education & Counseling. Another was helppro.com from the National Association of Social Workers. I searched my zip code and found very few, I searched a zip code I am familiar with in NYC and found many. It's my guess that therapists who turned up in the searches are registered members of the organizations.
For example, my therapist is skilled in these areas but does not appear on any lists. Back to the NYT article- it contrasted the Columbia approach with interpersonal therapy. But what kind of interpersonal therapy? There are so many different approaches.
I think the door is opening to ambiguous loss, anticipatory grief and disenfranchised grief but opening slowly.
edited to add: While looking at websites for finding therapists there were many advertising "getting over your loss" and "how to get back to normal". IMO that is potentially exploiting those who are vulnerable.
JanK, Your post has hit a nerve for so many. You are so right in that most caregivers have been grieving for years and have not had the kind of support for the grieving before they pass. Now when they pass there is yet another level of grief to deal with. For me the pain is greater since he passed because I am less busy with all the tasks of caregiving and am focusing solely on myself and trying to get through the day. Abby* thank you for those web sites. I feel like I need a really good therapist. The hospice therapist is good but does not really tell me anything I do not know. However, she is encouraging and what I need now is encouragement to rejoin the land of the living when what I feel like doing is staying housebound and isolated. I just have no enthusiasm for anything and just go through the motions. I went to a reunion last weekend and although it was nice to see old friends, I had to leave early because I could not sit there and listen to small talk about all the trips this person took or are taking yada yada yada. They knew my husband passed but did not get it and I did not expect them to. I hate being in groups and feeling isolated and alone. I have the same feeling even with my family. Ugh, pushing 4 months now and hoping things improve a bit. Thanks again.
You beautifully put into words what I have been feeling for years. I often think, "But wait..." as I have things to say but no one wants to listen. I am seeing a counsellor and have been for years and she classifies herself as an expert in grief. She did loose a child so certainly understands losses like that. I truly think unless a counsellor has experienced the ongoing loss after loss that we do, she/he just can't reach us on the deep, deep level we need.
My husband is still alive but I can totally relate to what you wrote CO2.
I often feel as if life is passing me by and I am floating above it or something. I think we need to come up with a new phrase to describe the grief inherent in dementia/Alzheimers caregiving.
I can relate to Katherine's "floating above it" feeling. But for me, it was a feeling of being trapped behind a glass wall. I was on one side of the wall...could see and hear everything that was going on on the other side of it...but I was cut off from everything, and it was as if I didn't really exist.
Yes, elizabeth! I totally relate and you said it much clearer!!
I am there right now and have been for years. I expect the upcoming years to be the same.
I truly feel as if I don't exist. I go through the motions and others respond to a minimal or non existent degree but it is surreal. I am on another side of a solid glass wall. Thank you for such a clear identification.
That's how I feel. Family and friends don't seem to see me. I go to the LTC and they don't see me or worse yet hear me. It's like I am talking and everyone is going about their business and I just walk around in the crowd, but no one sees or hears me. Maybe when we leave our partner in their care that's it for us. Go away lady we'll call you when we need you. We're just not important anymore........ Maybe we try to hang on to the past where we were so very important to hubby or sweet girl. Now people just see us as "THE BOSS" I know I worry to much about his care but that is me. "THE BOSS" I wonder sometimes if maybe I try to hard to see that he is being taken care of so I can't take care of me. I am going to try to get involved in the activities at my new place as soon as I move there. No sitting at home. Well, I will try.
Just a couple of additional thoughts on this topic -
1 - In doing more research on grief in the last week, I came across a kind of grief I'd not heard of before--disenfranchised grief. One definition was: "Disenfranchised grief is the result of a loss for which they do not have a socially recognized right, role or capacity to grieve. These socially ambiguous losses are not or cannot be openly mourned, or socially supported. Essentially, this is grief that is restricted by "grieving rules" ascribed by the culture and society. The bereaved may not publicly grieve because, somehow, some element or elements of the loss prevent a public recognition."
This sounded a lot like what caregivers are dealing with. We don't follow the "grieving rules", so we are not supposed to grieve.
2 - I went to a new therapist last week. She knew that my issue was grief. She asked me what part of my life was affected by the grief, and seemed surprised when I said all of it. Having had time now to think about it, I wonder what part of my life she didn't think would be affected by the fact that my husband has a terminal disease, and that I am grieving because of it.
She wanted to talk to me about "developing coping skills". I told her that I thought I had good coping skills, or I wouldn't have lasted this long. (I'm in my 13th year of caregiving.) She talked about pursuing interests and finding things I liked to do. She said I needed to develop a support network to help me. (I had actually hoped that by seeing a therapist, I was working on developing a support network!) She wanted me to get out and be more social. Did she actually think that none of these things had ever occurred to me? Did she have any idea of the restrictions caregivers live with that keep us from doing some of these things? No. She also wanted me to get DH's family more involved. Right. The same people who don't even send us Christmas cards any more, and who didn't send us their new address and phone number when they moved? I'm sure they're holding their breath, waiting for me to track them down so they can help us.
I don't think one little tiny part of the caregiving situation was even on her radar. It seemed very much like she was following a list of things she had read in a book somewhere. Actually, I think I have books here at home that are more helpful than she was.
The thing that bothers me about therapists like this is that not only do they not help, they can harm desperate, stressed people (like me) who are trying to find help. I wonder how many desperate people they've pushed over the edge with their "helpful" words.
Jan K, It sounds like this therapist is clueless. The suggestions she made are so obvious that either she must think you are stupid. Also, if she doesn't know the situation, telling an AD caregiver to get the patient's family more involved is very bad advice. What if the caregiver is dealing with meddlesome (or even litigious) in-laws? (We have heard examples of both from members of this site.)
Usually, I can hold my sadness at bay but tonight, thunderstorms from upstate NY are starting to roll east over our hills. If my husband were still at home and in his right mind, he would say, "That's Hendrick Hudson and his men bowling up in the clouds!" It's things like that remind me what our life together was like and how much I miss him.
"Disenfranchised grief"...I think that may be what I experienced 30 yrs ago when my ex father-in-law died suddenly. My children's dad and I had only been divorced for about a year. He was absolutely the world's kindest and most gentle man I had ever had the honor to know. He was the best Papaw to our kids and he was just so distraught that his son walked out on his family. I was so heartbroken when he passed away, but didn't feel welcomed to mourn properly with the family even though he was my kids grandfather (as if I didn't have the right any longer). 30 years ago divorce wasn't as accepted as it is today. I felt shunned and so sad that I couldn't publicly join with his family to honor his life. This term describes the feelings I experienced...I just never heard this term or the definition. Somehow it makes me feel better to know that what I experienced was real and now recognized. Thx Jan K for sharing!
So well said, Jan. The isolation that comes from friends socially rejecting you and your partner due to the stigma of Alzheimer's and Dementia, (it like the new leprosy, the way people react), makes bearing the ongoing grief so much harder. A friend did put words to what I was experiencing - Anticipatory Grief - and I found a book about it that helped me. Just having a name for it helped. I can totally relate to being cut off - its been almost 10 years of sadness, grief anxiety and worry, and overwork putting out just the fires at the top, while overwhelmed and exhausted here.
The book was: "Smiling Through Your Tears: anticipating grief" (another name for it). By Harriet Hodgson and Lois Krahn. It did validate my feelings to have a name for it and had some good tools and exercises that helped, particularly in the earlier part of this journey. I had not heard the term disenfranchised grief before and some of that seems to relate. Check out anticipatory grief as well. I ended up giving copies of the book to other friends on the Alzheimer journey and they found it useful. You can read the reviews here: http://www.amazon.com/Smiling-Through-Your-Tears-Anticipating/dp/1594579326
As a relatively new person to dealing with post death grief, I am beginning to believe that unless one has traveled this journey they are pretty much useless. I never thought that before. Having had a social work license in the day, I always thought I was "helping people" deal with life but really the only thing a good social worker or anyone can do is be present and listen. JanK it sounds like your therapist was doing neither. I believe being present is a way of being that requires a deep understanding of oneself and a deep spiritual connection to something greater. A lot of therapists just have degrees and head knowledge and it sounds like that is what she was doing with you --spouting head knowledge. Aside from talking to hospice I have yet to contact another therapist I think because I don't want to go through the experience of dealing with a therapist who does not get it. Right now I am going to 2 support groups a month. Although no one in either group is a "professional" they all seem to get it and it helps me. I have met with hospice twice and call them if I feel I need it. Jazzy, your comments resonated with me--it is exactly how I felt when I would visit him. No one acknowledged me and I felt very alone which is why I did take him out as much as I could just to get away. It is true that after placement one does have to let go more and allow them to do their job. I always felt he was well taken care of--he was clean and looked after medically. I had to remind myself that this was a job to them and they were not emotionally connected in the way that I was.
Ordinary people can be clueless about dealing with grief, too...or maybe they are just made uncomfortable by me mentioning death. Sometimes if I say to someone, "My husband died Sept. 2, 2014." or something like, "Oh, my husband's been gone 11 months now...we took care of him at home...he died right here in the back bedroom." they get this uncomfortable, deer in the headlights look. Others do seem to "get it" and give me a warm, sympathetic look, or say something like, "Oh, jeez yeah, we went through it with my dad." or something like that. Just a nano-second of warmth and empathy is all I need, but it is surprising how many people look at you like you have a disease and they don't want to catch it.
Ha, ha, ha--do they seriously think they're going to get out of here alive?
"She talked about pursuing interests and finding things I liked to do. She said I needed to develop a support network to help me. (I had actually hoped that by seeing a therapist, I was working on developing a support network!) She wanted me to get out and be more social.... Did she have any idea of the restrictions caregivers live with that keep us from doing some of these things? No. She also wanted me to get DH's family more involved."
Jan, I've been thinking about your post and this encounter and I can't even. It seems she does not have that sense of being present that CO2* mentioned. A good therapist needs to listen and LEARN from the client. Advising someone to get out and be more social could be detrimental to someone who is an introvert. And I also can't even go there with the advice to get your DH's family more involved. All this during the first session?!
You also said- "The thing that bothers me about therapists like this is that not only do they not help, they can harm desperate, stressed people (like me) who are trying to find help. I wonder how many desperate people they've pushed over the edge with their "helpful" words." When I posted upthread about ambiguous and disenfranchised grief and couple of organizations that maintain lists of therapists specializing in grief I was responding to marche's asking for suggestions.
To my knowledge they are legit organizations. I specifically ignored many internet ads claiming to "get back to normal" and "get over" grief. I ignored them for just the reasons you mentioned.
I truly believe that the best counselors are ones that have experienced it. Occasionally you will one that is 'gifted' in empathy and understanding, can connect with anyone even if they have not experienced whatever is causing the pain, but they are rare.
When I was a lay counselor I specialized in women who were abuse as children. I had been there and could relate. When I was dealing with not being able to have a baby there was no one around that knew the pain and I felt so alone. Wish there was internet in the 70s. My mom made the worse comment ever, this coming from a woman who had 7 kids: "I would have been just as happy without children". When my husband had the affair with a minor, I could find ones who knew the pain of an affair/betrayal of wedding promises, but not an affair with a minor and the resulting charges. Even harder because I was staying with him.
In my training I learned the counselors job is to ask questions and listen. We all have the answers within if the right questions are asked. A counselor can suggest or help lay out a plan for healing, but never tell a person they need to do something. I will admit there are those that want someone to lead them where to go, but the change that will last is when the person makes the decision and finds the strength within to go there with the encouragement and guidance of the counselor.
This topic struck a chord with me. I haven't heard all these terms before but they certainly make sense to me now that I have walked a mile in these Alzheimer's shoes. I have been reading this site and discussions for almost 3 years and luckily found it soon after DH's official diagnosis. My DH's decline has been rather rapid and I have often said to my friends that I "mourn" my husband a little everyday as I see more and more of him disappear. As he disappears mentally and is literally withering away in front of me, my 6'2" husband who used to weigh 195 lbs and is now down to about 167. He barely looks like my husband and he doesn't feel like my husband and he doesn't act like my husband. I know and accept that my "husband" will never come back even though he is very much alive. I miss him, our relationship, the fun we had, all the future plans we had that will never be, his quick wit and his support. I am alone to deal with it all and just would like to be able to turn to him and say "I need you to handle this" like I used to be able to do. I am no shrinking violet and have always been independent, but I'm so tired of handling everything and everyone's problems. Every time I turn around there is something else. Those are some of the times that I mourn what I once had and don't any longer. Or when people I work with talk about these wonderful trips they went on with their husband complete with pictures of the happy couple or the fun weekend outings they go on together, that's when I really know that I'm in mourning and missing terribly what I once had. He's here but he's not here. I decided to give my Psychologist another chance as I can feel myself getting more depressed. I only went once but wasn't overly impressed. As outlined above, others have had similar experiences so I remain cautiously optimistic. Depression...That is not me. I can handle anything and I bounce back and I don't get depressed and I'm the one my friends rely on to be their "rock" and solve their problems and be their sounding board and counsel them. BUT... this whole thing has thrown me for a loop. I take medication myself that I never needed (or thought I would), but I recognized I was hanging by a thread and on the verge of a nervous breakdown handling everything. This year was especially hard. One of my best friends died of cancer in February (she was 52), my son had major surgery in June, and my husband continues to decline and has started exhibiting more anger and agitation and I had to hire a caregiver to stay with him during the day as he can no longer be here by himself and cannot properly administer his insulin injections (he is also a type 1 Diabetic). So, I've mourned and continue to mourn my friend who actually did pass away and I continuously mourn the husband that I've lost. I feel as though I am stuck in this prison of an existence. Not my best day, but I will forge ahead, as I must. As we all do, with our grief in tow.
To Rona and Sass: I guess I would say that, while the main focus becomes (or already is) caring for your impaired spouses, it is also vital to take care of yourselves. I always found that that was easier said than done. Of course it is the knee-jerk thing that everybody says: "Now be sure to do something nice for yourself today...blah, blah, blah." Yeah, right. When you've got no time, no energy, and there are 100 things to do related to your spouse's diagnosis. It almost seems like a bad joke to try to take care of yourselves or do something nice for yourselves. I think you'll find that it is more a matter of finding and enjoying the happy minutes...not hours. For me, just a quiet half-hour (or five minutes) with that first, good cup of hot coffee in the morning (after many a sleep-deprived night), preferably on my back screened porch, was the golden moment of the day. So I'd recommend trying for something...even if it's minimal...that nourishes your soul as you're battling the Alzheimers demons.
But in terms of bereavement and anticipatory bereavement: I don't think anybody can be prepared for the death of a loved one. Not really. We can be intellectually prepared, but I think when the event happens, it just blows us out of the water. It's like the difference between seeing a photograph of the Grand Canyon or Yosemite...and then actually being there and seeing the Grand Canyon or Yosemite. Not the same thing at all. No comparison. I think I would try to line up a system of supports for yourselves long before the event occurs. Try to make sure the funeral arrangements have been made well in advance. Try to have your own business affairs and money arranged simply and in an organized way...so that when you are dealing with the bereavement and will probably be overwhelmed, ditsy, and tired, you have put at least some of your future plans in gear for yourself. Everybody says not to make major decisions for a while after the loved one dies...but there's no reason not to try to set up your future as much as you can while they are still alive. I suppose that means things like being cognizant of the life insurance, if any...what will be left to you in terms of pensions or social security benefits...if you'll need to go back to work (if you've left the workforce for caregiving)...all that kind of thing. Bereavement is a full-time job...it really is like carrying a weight around with you...it is exhausting, depressing, and makes it hard to get things done...or to care whether you get things done. So try to set up that support network in advance, if you can.
There's a non-practical aspect, too. I would try to make as many happy memories with your impaired spouses as you possibly can. We lose so much of them as Alzheimers takes over, but if there is a crumb left here and there, take it and hold on to the memory of it. If they are smiling and happy at all, take a photo of them to have for later. You will get happiness from that. And I have many memories of the last couple of years of Larry's life that wouldn't mean much to others, but that I cherish...the last time he was able to sit through an old TV movie with me without getting restless...the last day he was smiling and conversing with visiting neighbors before a huge downturn...and most of all...the last time he took my hand, looked deep into my eyes...and said "Liz...I love you." (I'll never forget that as long as I live.) But I'd also say that if you can try to be kind, try to be patient, try to create half-way decent moments for yourselves and your spouses while they are still alive...you will feel so, so, so much better and at peace with the whole thing after they are gone. If you know you fought the good fight for them and with them, it will make it much easier to look back with a smile and a tear and keep moving forward with your own life in the aftermath.
You said: "So, I've mourned and continue to mourn my friend who actually did pass away and I continuously mourn the husband that I've lost. I feel as though I am stuck in this prison of an existence. Not my best day, but I will forge ahead, as I must. As we all do, with our grief in tow."
My husband died in 2012 from FTD. The last four years were especially draining- and here I am referring to me- physically, professionally, financially and psychologically. Within what seems like a lightening bolt, my best friend's cancer, which was in remission, returned. I don't know much about staging, but I think it is 3b. I'm sorry for all you are going through.
From elizabeth* "Bereavement is a full-time job...it really is like carrying a weight around with you...it is exhausting, depressing, and makes it hard to get things done...or to care whether you get things done." THIS.