My Blog topic for Wednesday, September 19th, is "What do you do with the anger?" I have offered some suggestions in the blog, but I would like to hear what you have to say. How do you handle the anger towards AD; your spouse; your so-called "friends", your family? Do you have any ideas for a constructive way to deal with it?
I write poetry about my anger, sadness, frustration, and other negative emotions concerning my relationships with others. By putting my thoughts on paper. I am able to rid myself of the poisonous resentments and to put them in a proper perspective. I have found that dwelling on these slights and insensitive behavior from others only hurts me and makes me miserable, they just do not understand the misery of Alzheimers. I also meet with a person regularly and can vent then , ask for advice etc. That helps a lot.
I'm not in a very angry stage. I felt more angry and resentful a couple years ago when I knew something was organically wrong but I didn't know what. Very lately, for whatever reason (but I'm not arguing with it,) I'm feeling reasonably mellow, and remembering Jeff's "fully-there" days, which is somehow helping me keep things in perspective. However, because he's a fairly passive, even-keeled guy--albeit a cognitively impaired one--I'm not dealing with anything terribly difficult at the moment.
I don't think that I have ever felt anger. In the beginning, I knew that something was very wrong but seized on Gord's depression as a possible cause for his memory loss. When we were told that he had had a mini-stroke, I thought that was not entirely bad news. If we managed to keep any more strokes from happening, perhaps he would just stay at that level of forgetting. As it became apparent that he was forgetting more and more, I tried denial. Since he first forgot me a year ago, I would say that my main emotion is fear. Anything from mild anxiety to absolute fear that causes physical shaking internally and externally. This is my almost constant emotion. Fear that he might say something odd that will break through my denial of the moment, fear that in the next moment he won't know me, fear that at some point he won't come back from not knowing me.
I'm always learning something new from my readers. I hadn't focused on the emotion of "fear" too much, but now that you mention it, I'll bet it's one a lot of people have. There have only been two times I was fearful to the point of feeling paralyzed with it. The first was before we knew what was wrong with him. I was consumed with fear that it would be Alzheimer's. Then the doctor said it wasn't AD. When the second doctor recognized it as AD before he even did all of the tests, I was in shock. After the diagnosis, my greatest fear was what would happen to Sid if I died. My son and daughter-in-law took that fear away from me by promising they would come and get him and take him to California with them. My main emotion all of the time is sadness. Sadness at all we have lost and all we won't have in the future. But most of the time, I just try to live one day at a time, and enjoy the good days. joang
I don't do poetry, but as you know, I write. And write. And write. Whether poetry or prose, when you can release all of those emotions on paper, it is cleansing. I no longer go around all day and night with painful thoughts swirling in my head. They are all written down. So much better. joang
I no longer feel anger, I realized it didn't help. I feel resentment on occassion for all that we have lost and will loose in the future. Sadness is always with me even though I try not to show it, sometimes the tears must fall. I also was fearful about what would happen to John if I was unable to care for him. My son reassured me that he would take care of him until his own children could come get him. I just know that John depends on me so much and has said many times he would not live without me, that I can only hope I remain strong and healthy for him. I treasure each day we have.
I feel exactly the same as you - sometimes resentment at what we lost, but sadness always. The sadness is always underneath whatever I am showing to the outside world. I also agree with you completely about treasuring each day. joang
I often feel an overwhelming sadness first thing in the morning. Anger is triggered easily over small things that happen daily but I get over that pretty quickly as I realize there is little point in staying angry. We are both perfectionists and I must say my husband has been much better at accepting his limitations than I have. I grumble when things don't look right and I know that does not help. I should be happy that things get done at all and I have to learn to be less critical. That's difficult for a virgo!
I feel sadness as well. Some mornings it is a tie between the sadness and whatever level of anxiety I am feeling depending on how the previous day has gone.
Inge, I, too, am a perfectionist. As Sid's neurologist said to me - perfectionists don't do well with AD. We have to learn to "go with the flow". Very hard to do, but I never stop trying. joang
I will be going back up to Boston for my wifes 6month exam soon. The Drs. plan to do PET MRI and neuro psyche test to see how her EOAD is progressing. Still no word on getting her on any trial drug because of her young age. I have written, phoned, emailed different drug co but to no avail. Even her neurologist in Boston has tried but these studies have rigid guidelines. I feel that I am trying and doing my best to give her the best care I can and take care of the family as well. NOW today my MIL says that I need to be looking in Europe for new drugs and saysthis in front of my kids. I said I am doing all that I can already and you need to face the reality of the situation. Then my kids start asking me if I am doing all that I can for mom. I tell them yes thats why I go to Boston with her to try to get her the best care I can. They seem to be ok and supportive of me but boy am I angry and tired of all the back seat drivers who aren't in it 24/7 but all know what is best. They tell you in AD support groups to reach out but I tell you sometimes I think I would rather be alone! I have been at this for going on 5 years now and pretty proud of how I have been able to care for her and keep the family together. I have never been so hurt and insulted as I was by my MIL. If my kids were not there I would have said to KMA. If I was alone I would still need a computer to let me vent. Thanks for the ear.
Ask MIL to please be on the lookout for drugs available in Europe and alert you right away when one becomes available. Be honest with kids. (sounds like you are.)
There will be a clinical trial for phase III AAB-001. This should be anounced in clinicaltrials.gov mid November. There will be 4 arms consisting of 1000 patients each for a total of 4000 worldwide. The 130 sites have already been selected so please contact your neuroligist to see if they will be participating in the study. The cut off age is 50- but they will also have a sub group for familial early onset. I have heard that 75% of the participants will get the open label, 25% on the placebo. The first dosing should be in December depending on the site. In mouse models it stopped the progression but they do not know the results on humans and will not know until phase II results are analysed mid 2008.
I know of two additional clinical trials that shoud be starting at the begining of 2008. I will continue to post about different studies as I find them.
We all do the very best we can as caregivers. It's not our fault if we can't save our loved ones. For me it's raiseing awareness and volunteering to raise money for research. I'm trying very hard to save my husband & if I fail I will continue the fight for my children.
I will keep your above post here, but I am also moving it to the "Drug Trials" topic, so anyone who is looking for drug trials will find it under that topic. Thank you for the valuable information.
You know in your heart that you are doing the absolute best you can in an unbearably difficult situation. Your MIL is probably just as desperate as you for help for her daughter, and is lashing out in frustration.
Keep the kids up to date on what you are doing for their Mom, and they will understand.
Right now I am keeping it in. Since we are at the beginning, there is a lot to emotionally deal with. He is still able to do everything but remember what was just said or went on today and repeats things a lot. Also he is more attentive and jolly which he ceased to be back around 1985. I always thought it was me, but now I am thinking it was pre-MCI. Whatever, I am angry but just won't let myself go there right now. When it does want to come up, I take a deep breathe or two and relax. Works for a while and that is good enough for now.
Angry cause in his current condition, I really don't think he can find a job especially in this economy. I saw a job for deliveries for an auto parts place but you need computer skills. He hates computers and has never really learned to use them.
I could go on about things I am angry at, but won't.
I don't feel like I am angry just terribly frustrated. I have never had a lot of patience, even with my children. My youngest daughter has a very active two year old child. She offered to swap toddlers with me. I told her the difference is that her toddler can learn and mine can't and she agreed with me. On a doctors visit yesterday he ask if I ever yell and I do sometimes. He said that was okay that if help to relieve the stress sometimes. I have often thought that God was trying to teach me patience in my old age.
Fustration, anger, resentment, its all bottled up ready to boil over many times during this hell. at first during initial stages, i screamed and ranted/raved and asked the 'why me' question alot. then over time, you begin to realize that once you have come to terms with the fact that you are not going to defeat this disease no matter what your tactics, you can try to be at peace with yourself. 'acceptance for what we cannot change' isnt that it? no changing the fact our spouse has AD. and anything other than acceptance of that reality plus calm rational behavour on our parts does nothing but work against our own mental health. so i try the best i can, some days work others dont- but i dont beat myself up over it any more just try to tell myself to do better the next time. i am finding releasing the negativity and moving on- that is in my best interest as well as DH-Divvi
I don't really get as angry as I do frustrated and sad. DH has never raised his voice to me or I to him and still don't. Since he is doing fairly well, my stress level right now is low. Who knows tomorow?
The topic is "how do you channel your anger" and with that in mind, I'll tell you a short story of what happened to me in 1978. We moved to Houston for my husband's new job. We had 4 children (3 teenagers), a dog, a pregnant cat, and 6 gerbils. We stayed in a townhouse while we looked for a house (and ended up building our own dream house) that extended our time in the townhouse for nine months (it was supposed to be 6). I found that to get the house we wanted, I would have to get a job (I had been a stay at home mom until then - very active in all kids activities). So, I rented a typewriter, honed up my typing skills, and answered two ads in the paper, getting a job the first day, working in downtown Houston - a 30 minute commute each way in the best of times. I tried to do everything I did as a stay at home mom, plus working full time and fighting the traffic, and also getting with the builder on the details of the house. Well, after 5 months, I started having chest pains, bad ones. My husband took me to the doctor, who said that I was not Superwoman, and that something had to go or I wouldn't live many more years. That I had to let out the tension and anger and to yell to release that tension (I was raised to not lose my temper verbally). That I also had to stop trying to do everything, and let some of it go - either the housework or the job. My husband and children took over the housework, and I kept the cooking and washing the clothes with them putting the clothes away. And I yelled. And it worked. The chest pains stopped. The family thrived with love and sharing the load.
That is what we're doing today. I'm yelling and the family is sharing the load. I still don't have chest pains. <grin>
My anger is not aimed at "why me?" - it is "why him?" And, as Divvi says, I try the best I can, I don't beat myself up when I make mistakes, and I release the negativity and move on. Also, like Divvi, I learned to accept what I cannot change. Oh, and I try my best NOT to do my yelling where my husband can hear me....
This is an old thred I found but it is relevant to me right now. Sometimes I think why post others have been there before but I realize I need to do this for me. I am not an angry person but lately I have been finding myself getting angry. When dw asks me why are you so angry at me I say I am not angry with you I am just frustrated. Yes I am frustrated but it has been coming out lately as appearing angry this in turn gets Lisa very upset. I realized this morning I have been angry with Alzheimer's! Things have deteriorated to the point where we can no longer communicate and yet I keep trying but it gets lost. The woman I married is no longer there and I have accept that and not get angry about it but move on and do what needs to be done.
I am writing right now as this is one of the first times I actually am alone, have a caregiver going out with Lisa. She does not know that yet she feels she is going out with a friend. We started this way to build a trusting relationship and working well so far. This has to be as she will not accept that she needs anyone to be with her. I am doing it I am getting help and no matter what Lisa says she will have to accept it. I feel I am reaching burnout so need help. If any of you have read any of my other posts you will see that I have wrestling with this for a long time. I also had an updated assessment yesterday and she has or will be referred to a day program one day a week. She says she will not go but I will have to try and force it.
This is such a difficult time she cannot do anything for herself anymore, sometimes she says I just want to die, next time you are just trying to get rid of me ( by me trying to get help) next sentence I just want to get my own little house somewhere you can come and visit. ( this is because I feel even at home she wants to help then cannot do it and if I try and help her it just shows her she cannot do it so even at home she feels pressured, sometimes I feel she wants to be alone with no expectations of her)
We both are struggling, I am grieving for the wife I have lost, she is here in body but that is about it. Sometimes She is in tears about what is happening to her and other times she feels it is me that is the problem.
Rona, one of the wonderful things about this site is that you can feel free to vent if you need to. And even though a lot has been said about a lot of topics over the years, each new member can add a different perspective, or just use the topic to let off steam.
Frustration with our LO's or with the health care system that is supposed to help, and anger at the disease. That puts it in a nutshell for me, and it was that frustration that eventually caused me to place my DH at the beginning of June. Like your DW, he had no idea how incapable of doing things he had become, and although for a long time I just let him do what he thought he was doing to help (like the dishes), the clean up after he was finished "helping" just added to my workload and frustration levels.
Now he is someplace where he is well cared for, by people who don't get frustrated with him. I just came back from visiting him - he is much better off there, and even though he is only the shadow of the man I married, I can sit there and hold his hand, and be his wife again.
Thank you bqd Believe me I have thought of that, she is asking to be somewhere with no pressure but I am not ready and she is so young. I know we still have some good days and some good times left and I do not want to cut that short. Her father passed away, alzheimers in January, her mother a year before also dementia but vascular, so we spent a lot of time getting them into care then visiting them in care. Although it was a very nice and caring place it is hard for me to see Lisa in that type of setting. Even though I get frustrated and angry at times I am not ready to let go. I know the time will come it seems like it is getting closer but I just don't know what the trigger will be that will cause that decision to be made.
How are you doing since dh was placed. It sounds like he has accepted it well that is good or does he just not know?Right now I am struggling to get her to accept daycare a day a week.
Rona, I can so relate to all you are saying. It is so very hard when you are ready to do something and they are not--I finally realized that because he was not in his right mind that I could no longer go along or accept what he wanted anymore. I had to make decisions based on what was best for me. He was no longer capable of making decisions for himself. I know my DH did not want to go into placement and honestly it was the most heart wrenching decision I have ever had to make. But I had to do it to save myself. It was either him or me and I chose me. You will know when it is time. I knew it was time when I realized he was not sleeping and I could not get a good night's rest. I knew it was time when I was frustrated and angry and resentful most of the days when he was at home because I had no privacy (have a small condo) and could not longer leave him alone. I knew it was time when he was urinating inappropriately and did not understand that what he was doing was inappropriate. When and if you place her, you will understand that the journey does take a different path. In order to survive placement, the caregiver must let go and allow the professionals to do their job and that is very hard especially if you feel she is not getting what you think she needs. I think it took me about a year to accept the fact that he was placed, and I had to let go of his day to day care. As I have said over and over again as has been said many times on this website that it is best to do things before you think you need it because before long you will be glad you did. Although I had a period of anger, my main emotion was shear terror and fear and constant anxiety. When the phone would ring it was always fear that raised its ugly head. I think I read somewhere that often times anger is a cover for fear. I am so happy that you found a caregiver for your wife. At least that will give you a little breather from her care. Perhaps you can put her in a respite for a weekend or longer for more time to yourself. It is very hard to make any rational decisions or at least it was for me when we are under the gun of constant caregiving. Just remember you are not alone.
Rona, I know what you mean when you said "she is so young". It literally broke my heart to see my husband, after he was placed, sitting all alone among the other residents who were all in their 70's & 80's. He was 61. He once said to me (as we were sitting in the dining room while I was feeding him) "everyone here is so old". I agreed but did NOT go on to say "but look around...everyone else except you and 1 other are feeding themselves". They could all carry on some conversation and enjoy laughter. We had pretty much passed that point. I was burned out. It happened only after he was not sleeping much at night. I could no longer do the 24 hour shifts. The "trigger" for me getting him placed was pure luck, some would say. I call it a blessing. He got sick and was hospitalized for 9 days. He was so weak that he was admitted to the nursing home for 3 weeks of therapy to help him regain his strength. He never realized he was in a nursing home. We called it the rehab center. He adjusted so easily and dearly loved all the staff and the attention they showered on him. I made the decision to make the move there permanent. I felt like I could take him home and do it for possible 2-3 more months, but then it would have been harder to get him back in w/o realizing it was a nursing home. The most difficult decision ever but just like CO2 said above, I had to do what was best for me too. Almost daily he told me how much he loved the people there. I think he felt more love from them than he did from me at home because I was so tired, stressed and burned out. I was a much better wife to him once I had so many more people "on my team" to provide around the clock care for him. I was a nicer person once I wasn't working all three shifts.
Rona, We started out with the day center one day a week. At first he did not like it, but eventually he agreed to go willingly. We added an in home care giver for 5 hours every other week. After a year or so, we added another care giver for 4 hours every week. My DH resented the care givers. He did not understand that he could not be left alone, and I needed to get out and away from time to time or the frustration of living with him and the disease would do me in. Like CO2, I made a choice, and the choice was me. Then we added a week of respite a month, so that I could have a complete break. That worked for about 9 months, and then that was no longer enough. In addition, the last time he was there, my DH started to wander.
So, from our initial trial at day center, to placement, was almost three years.
I understand how you are feeling. If you had asked me in December of last year if I was ready, I would have said no. But 4 months later I was. I couldn't deal with the frustration any more, I wasn't sleeping, and I would get upset at the least little thing.
You will know when you are getting close to the time and we will be here to support you. Its a difficult decision to make.
I feel very fortunate because when I finally made the decision to place my DH, he also knew he was ready - he had been watching the toll that care giving had been taking on me, and he really didn't want to give me any more pain. So he went willingly. And he has settled in. He still goes to day center on Thursdays and I visit him when he gets back from that, and I take him to church and out for lunch on Sundays. And as for me, I feel like the load I have been carrying for so many years has been taken from me. And I can relax.
I do hope you can convince your DW to go to day center, as a start. You do need that time for yourself.
How do I channel my anger? I yell, and find it reflected right back at me. Then I take a deep breath and act sweet, and it is as if nothing had ever happened.
I have 2 different types of anger. One is similar to a feeling of impatience or irritation and is not necessarily related to dementia. It comes over me when I am fatigued. (I tire very easily.) It can be triggered by anything and aimed at anyone and when it appears, I know I’m over-tired. The exhaustion of caring for my husband at home caused me to direct this anger at him a few times. But when I saw the effect it had on this gentle, vulnerable man, I was ashamed and forced myself to control it until I could get some rest. Day care and a twice-a week aide helped.
The other kind of anger is closer to a feeling of fear or desperation and is directly related to the dementia. It began when my husband was diagnosed and was over-powering then, but it has lost a lot of its strength as I become more worn down by dealing with our situation. This anger was never directed at my husband and when I was angry at others, I tried not to let him see it because I did not want to make him feel uneasy. Now it comes to the forefront only when I think that others are mistreating him, which has been rare, or when I am fed a line of platitudes, cliches, or baloney about the disease. Even then, I do not always express this anger, because to do so might result in unintended negative consequences.
As far as “channeling,” I’m not sure what that means. I use rest, self-control, and discipline to keep the anger at bay. For as long as I have to oversee my husband's care and keep us financially afloat, I can't afford to devote much time and energy to it. Of course, when he dies, I will probably drop down dead and an autopsy will show that I have been eaten alive by this anger.