I have been home from my RI visit for a week now, and am trying to catch up on website work. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's new blog. Whether you feel the emotion I wrote about in the blog, or have a different take on it, please post comments here. Thank you.
Yes,Joan,I feel the same anger at this disease. I often cry to myself"It's not fair,it's not fair" for such a good man to be llowered to the same condition as an infant.Does the anger ever lessen?
Joan I am angry at this disease. What it has done to DH. He stands with a blank look on his face and tries to understand why I am fixing the sink or commode or many other things. He was always able to fix anything. You can see the sadness in his eyes while I struggle to do these things. But he has no idea as to what to do to help. The scared look on his face as I have been sick all week and could do nothing. He did not understand why I was at the doctor. But was scared as to what he would do if something happens to me. To see my DH who always was so handsome and dresses to a t, half shaven, clothes inside out or backwards. I do not tell him because it upsets him. To see him struggle to use utencils. I am so angry!!!! I am most angry it has taken. My support of a loving husband In Daily trails away from me. That is what has made me sick, handling everything by myself. Not to mention seeing it has taken the grandfather who would love to play with his grandchildren. He loved to play games with our kids. I could as all of us could go on and on at what this has done to him that makes me angry.
Absolutely! I often feel intense rage at what this disease has done to the man I loved and planned to build a full life with. I have to stifle screams when I see his vague confusion, lost looks, agitation, and vacantness. Breaks my heart.
I sometimes pound the bed frustrated that I am alone in it. Crying occurs in the least convenient times and places. I sometimes swear hard, loud, and long inside the house or in the car with the windows rolled up.
I am angry that the bank could not do anything with my husband's financial decisions as we did not have a diagnosis. I am angry now facing the debt I am left with as all my husband's income goes into his care.
I also get angry at the ongoing advocacy work I have to keep doing. I am happy to be his advocate but get angry at times with still how much I need to keep on top of things. For example, a couple of weeks ago the foot care nurse cut my husband's toe on the leg with poor circulation. I learned this from my husband. I immediately called the RN who did not know this happened as the visiting foot care nurse did not alert them or chart it. That was irresponsible.
The RN he did go on my request to examine my husband's foot and phoned back to say there was indeed a cut with dried blood around it. As an RN myself I was concerned about infection or worse secondary to that cut. Fortunately it healed fine.
I am angry about a variety of things many of which you mentioned Joan. I have a lingering depression which many say is the flip side of anger. This is the worst of all diseases.
I think there's so much distorted garbage in our society about anger. But your blog showed me something important to me. My Dianne would have repressed her anger because she hated feeling conflict and emotional streams healthily directed outward would have been trapped inside her.
I just met my new neighbors. They moved in two months ago but today they were in the backyard because everything is turning green up here now and we talked. I told them when you hear me screaming it's just me having a fit and I told them about my wife and that it happens sometimes. I have two bent teflon frying pans. Imagine me over the sink about to come up with yet another clever dinner for one smashing the pan against the sink yelling "I (smash) AM (smash) TIRED (smash) OF THIS!!! (smash smash smash).
Some may think that's unhealthy but if your psychiatrist does - change psychiatrists. The anger is in there which is a true part of reality and that needs an outlet - not repression.
I don't need frigging doctors to tell me I have all kinds of red flags and multiple flags simultaneously have a compounded affect and that these could go on for years getting bigger and bigger.
I have a collection of broken things in the house. Furniture doors I ripped off (three so far), appliances with dings and dents, I've had a rough couple of days which I'm sure is nephew incident related. The incident doesn't matter and hurting other creatures is dispicable; but, I can do what I want with objects I own. I do regret throwing the pillow I was trying to get into the pillowcase across the room so hard it hit my best oil painting, popped off the wall, and landed badly against a furniture corner. The river no longer runs through it. It has a fair sized hole in the river.
Anger is important as one of the strings on the guitar in which tempered reactions are like chords. Anger is outward where so much has been inward upon us exactly like putting your hands up when the thugs show up to pound you again because you can't resist the poundings the disease dishes out on us.
Conviction is like an undertone of anger. Determination is related. Authorization is related. Decision making is related. They are all outward from us to it. Anger when we are depressed can be valuable if we can channel it.
I am so glad you spoke of this. Today was perfect timing as I unleashed so much anger today along with a fountain of tears. I am so sad. This disease has ruined our lives. I cannot plan for tomorrow because I don't know what tomorrow will bring; I can't even plan for today. I feel boxed in with no or little choices. I watched my husband tell another patient in the long term care facility he loved her. I felt as I am the one who died or disappeared and for that moment in his mind he thought perhaps she was me. He, too, tells me I am the best thing that ever happened to him. I miss him, I miss our life-even the bad times. I miss being held and loved, I miss conversations with him. I just miss it all.
I guess I am weird, but I am very slow to anger - always have been. I wasn't angry during the 11+ years of caregiving - but unbearably sad. I still am.
A lot of my anger has lessened since I placed him. Oh yes it is there but nothing like it was when he was home. It is incredibly sad to see the progression of this disease it is true but when the anger or depression comes upon me I am learning to focus on my thoughts and use self talk to get out of that dark place. I know the facility is gpdoing the best they can and I am doing the best I can. I guess I am fortunate because my husband is very compliant but he does get confused on where the toilet is and needs help with all this activities of daily living and it pains me to look In his eyes and see that blank look. I try not to focus on what I have lost because it causes me to go that dark place so I am working at focusing on building a new life for myself. It is a slow,process and I am taking baby steps but I am doing the best I can.
You are not weird. I would describe my main emotion as deep sadness ...depression as they say is the flip side of anger.
This sadness is Soo deep that I often feel stuck... I don't want to do anything. At those times, I do what I must do for my spouse but have no other energy.
The occasions I feel anger are often directed at those whom I feel should be helping or at least visiting.
I think we will all go through many emotions on this horrible journey. It is the roller coaster that drains the blood out of me.
Joan, I do understand the anger you now feel. Let it out!
Anger, fear, sadness all at once when I realized that my brilliant rocket scientist couldn't find the bathroom in the home we had lived in for almost 30 yrs. I had to be with him every step as he shaved, brushed teeth and showered or he might shave three times in a row, get the shower water too hot, etc. etc. I am now terribly lonesome and sad but could not wish him back in that condition. I understand the previous posts except Frank was always at home so the placing didn't have to be decided.
It's nice to hear I'm not the only one with this anger and the deep sadness. I have been screaming and crying for a few years now as well and I'm told it takes a few months to get past this, but who are they kidding? I wonder if it will ever go away! I don't think so. I've lost this wonderful man and I don't know how to live without him. I watch him become someone I don't know and who really doesn't feel much for me anymore, but it is great when a little of him shows up every now and then. I get angry and want to yell at them when they don't realize that when they don't wear name tags that this frightens him as he doesn't know them or if they are workers or visitors. It must be terrifying for him.
Will this sadness and anger ever go away?? Anyone know??
Joan, great blog - and great comments. I'd have said that I don't feel anger, just an unbearable sadness, but Wolf's comment about how his wife Dianne repressed anger because she hated conflict reminded me that I'm exactly that way and perhaps that is why I accept and accept what has happened to my husband and our lives this past 7 years. Anger took too much out of me when I had to do everything for both of us, while holding down a very stressful job. Now, I just feel defeated.
Jazzy, I accept what has happened to him and to us, but I'm not sure if this sadness will ever end. He was a wonderful man and his loss has made me feel empty inside.
Do I repress anger? Maybe sometimes i do. I'm the kind of person who accepted the diagnosis. I hate that it has happened to us, but I can't honestly say I'm angry about it. I feel sad. There are days when I get irritable, depressed, sick, hurt. I get upset that our retirement years aren't what I thought they' would be. I'm angry when I can't do or go where I would like to go. I'm angry that everywhere I go I must take him with now, but at the same time I'm realizing that it won't be long now when I won't be able to go anywhere at all with him, not even to the doctor's office. But I can't honestly say I'm angry he has dementia, just very sad. For him, and for me.
Bev - I am pretty much like you. Not angry at the disease, just accepted it. If anything I am angry at his parents for passing this on to their children. I am more angry about all he can't do, all we can't do, and the loss of life as it was.
Yes, Charlotte, the loss of life as it was. I remember all the things we planned to do and never got to do. I'm heartsick that he doesn't seem to know his grandchildren anymore, not even his first, who he so loved and really was the light of his life. I'm heartsick that he spends hIs days mostly lying down now. He doesn't even want to watch television, let alone read or even look out the window like he used to. Even getting him to come outside and watch the beautiful birds that come to the feeder doesn't interest him. He's scared. And I'm scared.
But, Charlotte, I realize I'm a lucky woman. I have really wonderful children and grandchildren. I have to count my blessings. That's the only way I'll get through this.
I was angry at first, and so ready to just walk away from it all. But we all know that we can't do that. What may have made it different for me was we had DD at home. I had to keep my anger in check for her, if nothing else. Also I found that being angry did nothing but eat me up. I was doing more harm to myself than anything else. I am trying my best to count my blessing, like Bev said.
For me, anger has been like waves coming in and going out. There have been three major triggers that I think of while reading this topic. This time of year and the continuing chore of cleaning out the house we lived in for many years exacerbates whatever else my thoughts and feelings focus on.
(The first) Due to my husband's deterioration that started in earnest in 2004 I scaled my work back starting at least in 2006. He did not have a final dx yet so there were a lot of questions. It was not a given that there would be no remission or significant med treatment. A couple of years later I left a job and it wasn't a big deal; not a place where I was happy.
Not long after, I was offered a position that was ideal. It was really by chance. I wanted it very but it coincided with a significant decline in his condition. I felt unable and unwilling to accept it and I was angry. My primary thought, among all the other losses was "I can't even have this".
(The second) At about this same time my husband's employer turned more than nasty. This escalated and was a major issue for the rest of his life. I came across a lot of paperwork regarding this over the last weeks and it triggers a lot of anger. Rage, really.
(The third) During the last years of his illness his parents and my parents only made things more difficult. My decisions came under heavy fire. They weren't based on whim, but on adapting to hell on earth and in agreement with beliefs and values my husband and I had, and had discussed and deliberated.
His parents made things worse for both of us. My husband wasn't emotionally invested in my parents, but they made things harder for me at a time when I needed support, or at least neutrality, not judgment and criticism. His siblings (3) also contributed.
This year my husband's father was dx with AD. This has changed the collective tune quite a bit.
So, regarding the first issue, I'm not really angry anymore. Frustrated, sure; it seemed like a good opportunity. But, who knows how it would have turned out. With my husband's father I am trying to concentrate on empathy. They were projecting their own anger and frustration- on me. My parents have always been, and always will be narcissistic.
I see both of those issues as a combination of circumstance and human nature. Regarding the issues with his employer I still feel a lot of anger because of their inhumane use of power. I remember a movie line, "Why did you do this to me?", and the answer was "Because I could".
I followed your story from the beginning here Abby and IMO all the parents around you were domineering and as you say projecting their own on you. I was concerned for a long time that you seemed to be trying to deal with these things at face value. Tell them all to FO was what I felt so many times.
That may not be how it seemed to you or actually was but I can still remember specific phrases. The point is that you seem to be looking with (IMO) a more balanced perspective. There's a line somewhere between listening to our parents as an adult and parents simply not letting go of trying to domineer their offspring.
I've said often that my view of life includes many tests even though I don't see how a goldfish in a bowl can be judged for it's ability as a fish. In such a controlled and prewritten experient there is no experiment - there is only the predetermined outcome.
In a different metaphor I can't tell if I can enjoy a different life unless I go out into life and try something different.
Getting to the point, the powers will progressively shift to you. I've commented on your story. Let me show you mine in this topic.
My father couldn't control his temper. He wasn't always flying off but you never knew when. When he got angry he hit and I can still recall that rage face because I now know it is my face when I am angry and let the rage flow. I swore as a little boy that when I grew up I would beat him to a pulp. As a teenager I ran away from home once because he lost his temper once too often. My mother hit him with a stick until he got in the car and drove around and found me. Not much left to fester growing up in my house. Anyway, I knew when I ran away (16 yrs old) I was going to wait until he was an old man and then beat the crap out of him making him look in my face so he could see what a rage face beating on the helpless looks like. Fast forward to 10 years ago. I'm taking him to London, Ontario where my sister has a nursing home set up and he's weak in every way but can still walk, talk, and eat. He had to go to the bathroom and he couldn't manage his fly so I had to come in and help him literally holding his Johnson so that he could pee. He looked at me with his thousand year old face and chuckled "I bet you never thought you'd be doing this."
it's not what they did when they had all the power. It's what I do when I have all the power.
I never felt anger that the disease came to my family. I just figured it was the hand we were dealt along with millions of other families. I do feel sad and depressed. My anger was and is hearing, "He looks fine to me", by relatives after a 30 minute visit to the NH. I also get angry at nursing home worker's when I see them repeatedly try to reason with an ALZ patient. I have to cut my visits short occasionally to keep from yelling " He/she does not understand a word you're saying". I've just got to learn to quit getting angry about things I can't change. Easier said than done.
I'm one of those feeling immense sadness, not anger. When I took Clare out on Mother's Day and wished her a Happy MD, she looked at me and asked, "I'm a mother?" I don't think I've ever really felt anger during these past 8 years ... just sadness that our once bright future as young retirees went up in smoke so soon. And, needless to say, I currently feel great sadness that, while still married, more often than not I feel widowed. In fact, I just wrote an article on that theme, "An Alzheimer's Spouse ... Married, yet Widowed." Writing for publication has been and will continue to be my best therapy ... even better than my support group, which is absolutely fantastic. Some of my articles are painful to write ... but it's a great way to vent emotions.
I received your email with the link to your new articles, but haven't had a chance to read them yet. Is the "widower" article among them? If it isn't, please send me the link. I would love to read it.
For sure, the sadness is there - always, but sometimes anger at what the disease has done to Sid overwhelms me, and I want to scream, punch, and throw things against a wall.He was a hard worker, great husband, overall good person ( as I am sure all of our spouse's were), and he ended up a pathetic, confused, lonely, sad, mental and physical invalid. I am so angry over his plight, I could jump up and down and scream for hours. If I took such actions, it wouldn't do either of us any good, nor would it change the situation, but I can't help the way I feel.
At the end of every blog, there is a notice that says "feedback to Joan@thealzheimerspouse.com" . That is my email address. It is also posted on the left side of the homepage at the bottom.
joan@thealzheimerspouse.com
Because I don't want this thread to get off topic and veer off into a discussion on emailing each other, I will send you a private email on the subject. Check your inbox later tonight.
katherinecs ... my site is at www.allansvann.blogspot.com. By the end of this year I'll have had more than 30 articles published in peer reviewed med journals, caregiver magazines, and 2 op eds in major newspapers. All this is due to a column Joan wrote some years back about the need for us to become advocates. So, I advocate through my writing hoping to increase funding for AD research, change the ways doctors diagnose and treat people with AD and their caregivers, and to help fellow spouse caregivers. For me, wirting is therapy and a great way for me to vent my emotions!
Joan/Admin ... I just sent that 'Married, yet Widowed' article off for consideration by a caregiver journal. If it is published, I'll send you a copy and post the original on my site. Clare turned 68 today, so a check is in the mail to you. Stay well. me
Joan, I don't think I feel anger toward this disease. Pain, despair, and bone-deep sadness, yes, but not anger. Maybe that's because I think I've used up most of my anger on people: doctors who I thought would help with information or care and didn't, family members who could have helped and instead were critical, and friends who forget where you live and what your phone number is. Add to that the other people you have to deal with—like the lovely people who are supposed to help you with medicaid. I heard once that some people are so completely uncooperative that you have to consider them as the enemy. Immediately I thought of the medicaid people I've had to deal with, and remembered your own experience with them. By the time I get to the disease, I'm too defeated to feel angry. At this point, anger would seem like a step up, because it would mean that I have enough energy left to feel it.
Jan K. When he was at home I was angry all the time. It seemed my anger was focused on him but it was really I believe just hiding my own sadness and fear of the unknown. Now that he is placed much of the anger seems to have left or at least it is manageable. Yes the Medicaid process was horrible and for 6 months I was a mess. I hired a lawyer which I think helped. I doubt I could have done it on my own. He was approved in February and just now the facility is getting it right as I pointed out I had been overpaying according to what Medicaid is requiring me to pay. Everything moves at a snails pace. Much of my anger has turned to deep sadness and I see it as all part of the grieving process. I know everyone is going to die including myself but to visit him and watch someone go in this way is heartbreaking. I read about all that everyone goes through as a caregiver but when I see it with my own eyes happening to my husband it is so so terribly sad.