Anger

Caregiver’s feel anger at their situation which may or may not become repressed and turn into either depression or develop into illness or aggression.

Stages of Grief: Anger

When you first suspect your loved one has MS, you tend to find ways to deny it. Lynn kept saying his doctor had ruled it out. I kept saying, “Are you sure you’re telling him everything?” When he said, “Yes,” I would accept that as true because I wanted it to be true…denial.


Then, the day came when all the tests were back, and there was no denying the fact he had MS. By that point, he had significant symptoms he had denied, which I no longer could. By late into the evening hours, he was doubled over, unable to stand upright. He would fall easily; drop things. He was too exhausted to eat, and he loved to cook and eat. We would go to the beach for him to fish and he would find reasons not to go out but to stay in and rest. So, I knew well before the telephone call what the diagnosis would be.


I quickly moved from denial to anger at that point. I would not play his game anymore of pretending the elephant in the room wasn’t there. I was furious with his primary care doctor. Why hadn’t he been able to see what was going on before Lynn got so bad? He had a family history of MS for heaven’s sake. Was he a quack? I was ready to report him to the Board of Medicine for being incompetent. Then, I realized that the problem might not entirely be the doctor’s fault; it might be Lynn’s. Lynn was so sure he could NOT have MS or rather, he would refuse to consider the possibility, that I suspect he hid his symptoms. He has even acknowledged as much to me since. When I realized Lynn’s own refusal to face the possibility, I was angry at him. Being mad at Lynn brought about all sorts of conflicting emotions.

 

(1) I was supposed to be his support system while he adjusted to the news he had MS, BUT inside I was saying, “See. I told you so. You didn’t have to have gotten this bad but would you listen? No! Now, look at you.” Of course, I could not say that, but it’s what I was thinking.


(2) Its politically incorrect (not to mention futile) to be angry at someone for being sick. We, as a society, look in horror at someone mad at someone for being sick. How can they be so heartless? So, we don’t show the anger externally…but it’s there. This “disease” has now put the one who has it in a place of more considerable significance. No longer is the playing field even, but now all decisions will be made based on the impact of the disease. Being selfish by nature, that doesn’t always sit well with me. I resent when I can’t do what I want to do because of the “disease.” I’m not the one who is sick, but I’m the one who has to fix everything so that he can be as comfortable and as well as possible, even when my health might suffer.


(3) I became angry because I didn’t want my life to change. I liked being able to go into work, go out, sit and read, go to bed when I wanted, eat out, lots of things that were going to change. This emotion I struggle with a lot now. I have no “me” life, or at least it’s minimal. I go into work away from my caregiver responsibilities once a week. That’s my only time away from him other than a quick trip to the grocery store, pharmacy, or library. Nowhere else do I go…and I get tired of that. I see a movie advertisement, and I want to see it, but I can’t. I know that I have to wait till it comes out on DVD and then I’ll only see it if it’s something Lynn would also like to watch, and if we watch it, we do so as I feed him. Very rarely do I have time to sit and watch a movie (or anything for that matter) on TV. I used to LOVE to read. Now I feel guilty if I skim an article on the internet because I know that will put me behind in all the things I need to do. (I get around this one though by listening to books on tape from the library…a great escape!)


(4) I’m angry that I will not be able to retire to the “good life” we had planned. The house we had started to build sits idle with a completed foundation and likely will never become a home. All our spare cash goes to buying organic food, supplements, and equipment to meet his medical needs. We cannot travel because he cannot tolerate it. I can’t get an aide or assistant caregiver because they are too expensive full time so I must work and do his care on my own. If I were to retire (I’m almost 58) then we would not have enough money to continue to support his health as we do now and he would likely get worse. So I have concluded that I will have to work until I die or become disabled myself and can no longer go on.


(5) I’m angry about all the events I miss. I want to play with my grandson at the park, go to my parent’s home for family reunions, attend a conference at work, go to the Christmas cantata, attend church regularly, go places, do things; see people and I can’t. If an event is not at hour home, we don’t get to attend because Lynn cannot tolerate being out for very long and it’s challenging to get a caregiver that doesn’t cost anything when most of my “backup” caregivers are at these events themselves.


There is much about which I’m angry. I’m not upset with Lynn. I’m mad that he has MS. I’m angry at this monster has invaded our lives, and there is no getting rid of it short of death. I’m mad that as hard as we work to make him feel better than 6 ½ days out of 7, he feels terrible. I’m mad that he can’t help me. I’m angry that he can’t share in the joy of playing with our grandson. I’m furious that he can’t sing at church or play the drums or accompany himself with his guitar because he was SOOOO good at all these things.


I’m angry that I can’t fix this. I’m mad that I have to watch him suffer. I’m furious that he needs me so much and I’m angry that I can’t give more. I’m angry….


But not always. Just sometimes.
finish reading this article at http://multiplesclerosis.net/caregiver/caregiver-perspective-stages-of-grief-anger/

Independence Battles Protection

One of the greatest struggles I have found in being a caregiver is finding the happy compromise of my husband’s need for independence and control of his life versus my need to control his environment and keep him safe and healthy. Many times these two needs seem to be in direct conflict with each other. Here’s why I think.
Him:
Lynn was in his 40’s when he was diagnosed with MS. He was married, had a child, a successful career that was very physical, he played in a band, sang, and was a strong man of faith. MS came along, and suddenly, he was vulnerable. No longer did he have the stamina to work all day and go to band or choir practice at night. No longer could the go to trade shows and walk the miles he needed to make sure the displays were set up and workings as necessary (these displays were often the size of small houses). No longer could he travel and immediately to go work after landing. No longer could he drive because he could not determine when his leg would cooperate with pushing the gas or the break. In his mind, he was losing the man he was because let’s face it; we are what we do to a large extent. He was slowing losing his identity of himself, so he was trying to control anything he had the power to control. Thus came the conflict.
As Lynn’s muscle fatigue and spasticity would get worse, so would his balance and ability to walk any distance. Several times a day, he would fall. Sometimes he would get hurt; other times it was his pride only that got hurt, but he refused to use a cane or a walker. He would put his hand on the wall or furniture or lean on me, but he was NOT going to give in and use a cane! He refused to admit he needed help because in his mind if he gave in to the disease, then the condition had won.
Me:
When Lynn was diagnosed with MS, we were married (both for the second time), both of us had children, and I have a very time consuming and difficult job. My two children lived with us, so my life was hectic all the time caring for the kids, keeping up with the house, and managing my demanding job. Though Lynn and I had joint interests (we both were in choir and both very involved in church activities), much of the time we went our separate ways because we both were super independent. I also needed to be able to control my life so I could fit everything in that I needed to do. When I have control, I feel safe and confident.
Enter: MS.
I watched as my husband’s body began to decline. I could see his struggle to keep going when exhausted. I could see how, as the day progressed, his balance got worse. I understood that he felt that if he “gave in” to the disease, he would lose his fight against it. However, I was also very frustrated with him. I saw him fall and sometimes not be able to get up knowing that at any moment, he might fall and break a limb or hit his head or break his back. I KNEW he needed to use something for support. I KNEW he needed to make changes in his lifestyle to conserve energy…but, he refused. I became angry.
Both:
I was angry and frustrated. He was angry and frustrated. Both of us felt right in what we were doing, and both of us were, but we needed a compromise. Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-independence-battles-protection/

All He Can Do Is Yell

I’ve never been comfortable with strong expressions of anger. I’m the sort of person that prefers to compromise and resolve things peacefully so one of the more difficult challenges I have faced is how to handle Lynn’s frustrations expressed through anger.
Today as I was working at my desk, I heard over the baby monitor I use to make sure that I hear him if he needs anything, the increasing volume of Lynn’s voice as he was trying to get his voice recognition software to work properly. As I sat there, I could hear him first repeat the same command three times, each time a little differently.  Then he started adding in a few expletives and some not very flattering descriptions of the software program. Finally, the volume and expletives became so intense, I could no longer listen to it for fear that he was about to take his headphones off and through them across the room.
Read more at:
http://multiplesclerosis.net/living-with-ms/all-he-can-do-is-yell/