I know I've been saying all along that I am sad, not angry, about AD, but this weekend I got ANGRY. I invite you to read today's blog and comment on it.
Are you or have you been as angry as I am? How did you get through it?
ANGRY? Sometimes I feel like I am smoking. My husband says that dementia is the modern-day leprosy. People don’t know about it, and they don’t want to know.
I’m angry that out of a father and six siblings in my husband’s family, we got one Christmas card this year. My husband says that he feels like as far as they are concerned, he is already dead. My dear husband has to deal with his own family not calling or writing, and not even sending a Christmas card. Don’t get me started on this one—I’m already on medicine for high blood pressure!
My own sister, who I had supported through many situations through the years, decided that she didn’t want anything to do with us now. We were treated like my husband had done something in seriously questionable taste in getting this disease. She told me that she didn’t want her children exposed to it. They were 17, 15, and 13 at the time, and my husband’s only symptoms were that he was a little slower in talking and understanding.
My sister also told me, “It’s not like it’s a brain tumor.” Gee, wasn’t that comforting? It’s hard to get a comment like that and not think that they meant to be deliberately cruel.
She also told me that “I know it’s hard, but you’ll get through it, and then you have the rest of your life.” So what I have to look forward to, according to her, is my husband dying, and then being in my sixties and living the rest of my life alone. Meanwhile, her husband is healthy and they are redecorating their house and going out to dinner and on vacation.
I’m angry that we are invisible. When my husband was diagnosed, statistics were not even being kept on EOAD. Every source of help that was available for people older than us was not available for us, just because my husband was the wrong age.
Our own losses because of this disease? That’s where the sadness comes in. I like anger better, frankly. It gets me up and moving, whereas the sadness sort of makes me cave in on myself.
Okay, as far as getting over being angry?…. Sort of a work in progress, as you might have guessed. Sometimes I think that one day it will be their turn to deal with something. But honestly, this is something I wouldn't wish on my worst enemy.
I'm so glad we are anonymous. Even though my husband has been so sweet throughout this tragic illness, there was a time (about 8 years into the dementia--it's been 12 or 13 now) when I would completely lose it. I'd ask my husband to do a simple errand for me (like bringing my purse in from the car) and he would come in with the insurance papers from the glove compartment or CD's or whatever else was in the car and not bring in the purse. Or I'd ask him to bring in the milk from the outside fridge and he would bring the bag of ice instead (there being only the two items in the fridge and he would bring the wrong one--100%). It was always when I really needed the help and I would scream "You f****** idiot" at him. Thank goodness he would immediately forget what I said. Oh, I feel so bad now about how I reacted. Now that I understand what he can do and what he can't, we don't have those problems. But those times I was about as angry as one can get. There will come a time for all of you, if it hasn't already, that you will figure out what your spouse is capable of and go with the flow. There will be no more intense anger--just smoldering anger. :-) Of course just as you figure it out, something else will happen. But by then, you have a different perspective and what used to be a big deal isn't anymore. And I'm sure the anger of the situation in general will always be there--it never goes away. Let's see what that studio apartment rents for in NYC. Anyone ready to run with me?
Jan, when I hear about relatives like those you're describing I consider myself very lucky. It's impossible for me to fathom those reactions, though I know they occur. I don't know if there's a way to get through to people like that.
Joan--walking (and walking, and walking) is an excellent way to deal with feelings like that.
I guess I have moments of anger, but not too much.
I sure relate to wanting someone to share the load. Sometimes I have such a strong impulse to just snuggle up with Jeff's shoulder and let someone else carry it, but I can't, and I just suck it up and carry it myself because I'm so aware that he's just a confused puppy.
I think, for the first one or two years after diagnosis, I was sad and frightened . The anger came when my "husband" left me and the child took his place. We too have few friends who keep in touch on a regular basis. I have no family and husband has three children . At the present time his son is visiting with us for a week.This is such a good break , having company and conversations. He told me that we would not be hearing from the eldest son EVER again as he can't deal with our situation. The visiting son says he couldn't live like we are, that he could never do the things I do and tolerate the abuse,and that's with the help of prozac, for husband.
Now, approaching year seven, I am very angry and have difficulty keeping a positive attitude, having to live in this negative envrionment. However,I read positive messages, like Rev. Run and whatever publications I can find . Also I have a few people who understand, most are new acquaintances, who didn't know us in our previous life. We both go to the gym. Sometimes he doesn't want to so I go alone. The exercise helps.
I'm going to try to get husband to agree to a respite week or so.
I don't have any answer. I can only say that I am angry .I think I've gone through every possible emotion with this disease.
The past two days I have been so depressed because of many reasons but mainly because my sons don't understand my need for emotional support . Right now, I am having to prepare my tax information for my tax preparer. My husband always took care of the financial affairs and I refused to even write a check. Now this is another responsibility that I certainly wish I didn't have, most of the ti me I try to handle the fact that my sons dont step up and help their mother handle some of the many jobs I have had to assume. Then I get angry, because I really have not asked them to do anything that is not their reasonable service T hey should help and I shouldn't have to accept their lack of respect for me. The more I dwell on it, the more self righteous I b ecome as I think of my need for them and their lack of response.
My anger is, I believe, is a form of protection for my emotional well being. Otherwise I might just give up and be unable to function. As it is, I refuse to be beaten down so low by people I think should be my strength
My Earnie adores his two g randchildren and responds to them as well as he can respond to anyone. However, "Mom and Dad" think that the Grandfather is not himself anymore and they shouldn't b e exposed to the residents and their behavior. My DH would benefit by more frequent visits by his family but is not allowed to have even that joy. I get so angry because I am their mother and should be treated with more respect and consideration.
I guess my anger is aimed at myself for failing to be able to take of my wife. Recently, in the past 6 weeks, she has become incontinent. It started out as a minor accident here and there and developed into a daily routine. She doesn't recognize me as her husband but as her caretaker who she loves very much. But, she will not allow me to undress her so that I can change her depends and outer clothes such as blue jeans which are always soaked after an incident. Mostly, she will wake up in bed in this condition. Once, she was in K-Mart and once she was in the car when she had her accidents. It has continuously become worse. So I am angry at myself for having to sit by and look at her in this condition even though she doesn't even appear to realize she is a mess. My only recourse is to call my daughter or S-I-L and ask for help. And I am angry, embarrassed, discouraged that I have to disrupt their lives to give her a shower and change her when she is my wife and it's my decision, duty, job or whatever to care for her. All I get for my efforts to care for her and her incontinence is her anger, threats and aggression.
Please don't feel angry. There are few people who could take care of a spouse , on their own, in circumstances you describe. Of course you need help ....a lot of help. Being a sole caregiver, without family help, I know I could never look after my husband when he becomes incontinent etc. Even now his son, who is visiting at the moment, suggests that we are beyond my capabilities.You may want to consider LTC..
Dave, I have also started to deal with occasional/frequent incontinents from my wife also. I have to assert myself on her to get her cooperation by raising my voice. It works but then the kids tell me I shouldn't yell at mom and I have to sit them down and explain why I must to get her to cooperate with me so I can clean and change her. I hate to yell but trying to reason with her is not a viable path any longer. As caregivers we are often torn to make choices that are best for our love ones, and give us anguish guilt and anger. You have to keep telling yourself that you are doing your best for her. Thats how I try to deal with it.
I have always had it in my mind that when incontinence became an issue it would be time for the NH. Now, of course, the only thing I know is I don't really know anything. I take it as it comes. One thing I know for certain is how helpful it is to have this website. I am sorry, however, that there are so many people in our situation.
As for the incontinence, that is not a reason to seek placement in most cases. You will find what works. Then I guess I should not be so quick to say this. Some Alzheimer patients such as Dave's wife will cause a problem when trying to clean and change them. In a case like that you would have to seek placement or in home help. I have not experienced that with Jim. He is incontinent and I do take care of him all alone.
Dave you might try dressing your wife in different type clothing. Try pants with the elastic waste, that way you can remove the easier. Just try different things and one day you will find what works.
Joang, yes, I am angry, I have experienced all the anger you spoke of on the blog. I hate people, I hate the disease and what it has done to both myself and my husband. I know of no other disease on earth that causes two people not just one, to be dependent on others.
We have reached a stage where my husband cannot be left alone. That means that I am also dependent on others for help, if I need to go out for anything then of course I have to have someone come to stay with Jim. I can do nothing whatsoever without the help of others.
I hate people because no one seems to care. Unlike cancer, heart, or some other disease it is though people want no part of it. Just to think how the person with the Alzheimer disease would be left if they did not have a spouse that loved them. It is like living in.... I have even been so angry that I find myself truly wishing some of his family had the disease so that they would see how we have to live. For that I feel so sorry, I feel so guilty to think like that but I would be lying if I said I did not.
We were in a situation like many of you. Only we could not afford LTC. We were too "wealthy" to qualify for free care but too "poor" to pay for it ourselves because we are still paying on a mortgage and need both incomes. Then I found out my husband qualifies for LTC at the state-supported War Veterans Home about an hour away. They have a 120-bed ambulatory Alzheimer's unit. It's not a part of the VA though the VA does contribute financially. There is a six-month waiting list but just knowing it was available was such a relief. But before we got on the list my DH was diagnosed with his third cancer in four years and now we are eligible for Hospice. As you all probably know, one cannot qualify for Hospice until the doctors think the patient has only about six months to live. In addition to the Hospice home care, we have a wonderful new Hospice House here and DH can go for a day or for up to a week at a time to give me a break. Since DH is on Medicare, we don't have to pay but a minimal charge for the respite care. The Hospice rep has come out to talk with us but I think I can still care for DH and told them I'd like to wait a month or two.
BeBe. Just know we are thinking of you during this time and our heart goes out to you. Don't wait too long before allowing Hospice in, they will be a great help to you. When my mother had hospice with cancer we had no idea how quickly things would change. She was up reading the paper one day and the next could not turn over in bed by herself. It is better to have them sooner rather than later.
I agree with Jane. My mother in law, who died in October of congestive heart failure, had hospice services for exactly one day, because we didn't want to start "too soon."
I am late reading this, but what a great topic. I was angry last Mar/April when my wife became incontinent. I couldn't understand why she was doing that to "me" and why she wouldn't cooperate. I was mad in middle of night when I had to change the linen and clean her up only to have it happen again the next night or even sometimes the same night. It was driving me crazy, I was yelling at her, trying to force her to understand that she must use the toilet. I was angry because she fought my attempts to clean her up. Well in May she had a Gran Mal Seizure and I stopped being angry at her. My anger turned to fear and perhaps an understanding of how sick she really was. Yes, I still get a little upset at times, but it is usally because I didn't get her to potty in time or wasn't watching closely enough and she soiled her clothes. I also have looked for better ways to handle incontinence, ie scheduling the potty times, bought clothes that are easy on/off, bought nightime diapers that contain everything. I still hate this disease, but I'm not angry with my wife as I was last year.