So What About the Caregivers? ***RANT***

[amielzbth]

I've noticed that this forum, even though it states it is for relationships and carpartnering, that if one vents negatively about a situation with a person with MS, their is criticism. When I first joined this site in 2008 (the year my now husband was diagnosed) I wanted support and I got it. However, when I was angry at the situation I also got stepped on. I didn't appreciate it at all. I felt that I wasn't allowed to be angry or upset even on here. It was as if to say "Well, if you get angry about your husband when he gets angry at you because he's angry at his MS or when he decides he's going to be self destructive, then you need to just understand that his illness isn't easy". Um...I'm human and without MS. The most I'll understand is the acronym "WTF" these days.

Now, my husband has done just about everything: Copaxone, stem cells, Baclofen, Ampyra, CCSVI treatment (twice and not much came of it at all) intrathecal mexotrexate (sp?) and now a Vegan diet. I've traveled with him to Costa Rica, Chicago, and Albany. I've gone with him for his treatments at the research center in NYC (where we're from) so to hear stuff like "well you just need to understand that this isn't easy for him" or "you need to be more supportive" is a slap in the damn face. If I want to get angry I'll get angry. And I think other Caregivers on here should feel they can get angry, too, without the guilt and judgement because quite frankly we're tired of feeling guilty for expressing how we feel.

I love my husband. Hell, I'd KILL for my husband that's how psychotically in love I am with him. But, I'm also human and if I find support group on a site that states its for caregivers then I want to feel like I'm being supported. Its impossible to even find groups OUTSIDE of here as there are no caregiver support groups anywhere in NYC apparently and I've made phone calls and looked. I'm wondering if the chat on Wednesday nights allows a caregiver to vent out their frustrations without being judged? I think we deserve it. All the way. MS doesn't just affect the person who suffers from the illness. It affects the ones surrounding the illness. We are the Co-Ill. We deserve a space to freak out once in a while without being told "you don't seem to care about your loved one" or "You don't understand" or "maybe you should just leave the person and live your life if you're that angry". Because seriously, that's like me saying "maybe you should give up on yourself if you're that depressed". That's not cool, right? I thought so.

[Sequoia]

MSWorld encourages members (which includes caregivers) to rant/vent when they feel the need. I think most, if not all, of us just need to explode from time to time. I know I do!

The thing about a rant, though, is that we don't get to say ahead of time what kinds of responses are acceptable to us. Some people will just say "I hear you!" and leave it at that, some will commiserate at greater length, and some will want to offer what they see as helpful suggestions. Some may even be critical.

The best advice I can give you comes from AA: "Take what you can use and leave the rest."

I'm sorry you haven't gotten the feedback you were looking for here in the past. Hopefully this time you will.

[amielzbth]

Thank you. That was what I needed to read. I go to meetings myself (Not AA) but um...well my husband is also an addict so I go to a survivor meeting. I totally get the 12 steps. And you're right. I just have to take what I can use. Thank you

[jbell2435]

I get it

Hi - I just wanted to give you hugs and best wishes, I know this can't be easy for caregivers either.

My husband doesn't open up, but when I was going through a rough patch in December, he was scared and mad (not at me but the disease). I cried and told him how very sorry I was that he had to go through this too.

I get where you are coming from and have nothing but admiration for you and all the caregivers out there that are being supportive to those of us with the disease.

You are 100% correct, you are living with it too.

[Alicious]

It sounds to me like you've been to hell and back and are still going strong, and need a place to let it out and vent from time to time. I for one can't fault you for that!

[techie]

I became even more self centered when I was dx'd. My dear husband has finally spoken up and told me 'Hey I have aches and pains too!'
Good wake up call for me.
I sure needed it.
techie

[Blackcross]

Now that I have gone 6+ years without a relapse, the longest stretch in my adult life, and my brain has had a chance to reroute signals... or whatever it does during the Good times. I can say that my actions, reactions, decisions and attitude {from 18 to 31} was influenced by the Disease.

I pushed away a lot of people who were close to me because of it. MS is so hard to deal with because it's nearly impossible to pinpoint just How many things have been affected. That said, I've been in a relationship now for 5 years {anniversary last week} and I do everything I can to counter those actions, reactions, attitudes. I Love her and she does so much for me that it would be unfair of me not to make that effort.

Standing in one spot for more than 5 minutes and I'm in pain, I get anxious, blood boiling and need to leave. She understands this as best she can, but she can get frustrated too. We've gone out places to do something, only to have me say "I can't do this, I have to get out of here" or something to that effect. Other times my head is just too foggy and I'm silent, or angry, sometimes lippy. But I always make sure, when my pressure returns to normal, to explain what I felt at the time or to apologize.

So as a man with MS, I can say that there are times my GF has every right to be annoyed or angry with me. Though thankfully she understands that I can't help it sometimes, so she does her best to hold it in, so I show her my appreciation for putting up with me during those times.

You aren't being unreasonable at all, as the man who loves you he needs to try to compromise {if he can.. some people aren't so good at it I've heard}. Or at least realize that this disease plays Havoc with our Brain, which controls everything we are. But that also means that many times we don't have complete control of our emotions.

There's a link in my profile, called MS Symptoms of the Head and Neck, that explains the invisible things MS does to us. I think it's something both of you might want to read, hopefully after reading it you can open a dialogue about dealing with any problems.

[amielzbth]

Thanks Guys and Gals

I really needed to read these posts. Its been hard on the other side of it when you feel like you can't have an opinion or an emotion because others tell you that you don't understand. I understand the whole thing about support, but I also know that if I don't have my own I will go ape. I do have a therapist and we do go to couple's counseling. He is getting slightly better with the communication. He's had this for about four years (if not longer) and its been rough on him and on me.

We should have a caregivers walk. LOL!

Ami

[twisterred]

Ami, please post again! Your point of view could help MS patients understand what it's like on the "other side" of the disease.

Im the one with MS.
My DH has been a trooper for many years.
I know he tries not to complain to me, but I do recognize he's sacrificing without the benefit of a support group.
Everyone is nice and asks him how I'm doing.

No one really asks him how he's feeling


My guess is people don't recognize the extra responsibility you, he and all other close caretakers have.
It might seem too personal to people.

It would be great if you shared whatever you want on any of these posts.

I admire you so much. Your love, dedication and sacrifice are appreciate.

Thank you.

[tommylee]

Now, my husband has done just about everything: Copaxone, stem cells, Baclofen, Ampyra, CCSVI treatment (twice and not much came of it at all) intrathecal mexotrexate (sp?) and now a Vegan diet. I've traveled with him to Costa Rica, Chicago, and Albany. I've gone with him for his treatments at the research center in NYC

Wow! You are a couple of "go-getters"!

Vent away and piss up a rope all you want!
Sounds like you have tried everything else?

This is one place people will understand the frusteration MS brings to life.

You sound like an amazing supportive partner and if it helps to come here and scream for a while...Go for it. (we won't be offended.)

[amielzbth]

I wonder if there can be on on here that we can put in for caregivers who need to totally vent and say whatever they want so that they can feel better later without being judged or feeling guilty?

Ami

[tommylee]

I wonder if there can be on on here that we can put in for caregivers who need to totally vent and say whatever they want so that they can feel better later without being judged or feeling guilty?

Ami

Not likely to find that place anywhere.
This is a public place and like all public places; people will judge you.

You just may find more people here that can relate to your situation?

People will judge others in this life. I do not think that will ever change.

How you let the judgement of others effect you is your choice.
That is all the power we have in the the whole process as it is not possible to control the thoughts and emotions of others.

The only place where you can be free of judgement is probably being alone and that has its own problems.
(although alone is often under-rated)

Happy ranting!
Better to PO strangers than people you love.

[Cat Mom]

Any caregiver that finds their way to this message board in order to better support a loved one with MS must be a truly caring person.

I am the person with MS in my family and I read the caregivers' rants (and non-rants) because they help me to understand what my family lives with; sometimes those rants really put things into perspective for me.

I'm an extremely mellow and easy-going person but sometimes I can see my own "MS-related" negative behaviour/bad attitude in those rants; I can catch it and change it before it becomes part of my personality or an issue with my family.

I may be alone here but I would personally like to thank you and other caregivers for feeling free to open up here on this message board; it actually helps me. Cheers!

[MSSINCE09]

I am in complete agreement with Cat Mom I as well will get on and read the rants. It helps me see things from my poor husbands point of view. When I was diagnosed with MS so was he in a way. We both deserve support, love and places to go like this for me, or people to talk to like friends. I truly feel he is affected by this just as much as me or more. He gets to watch the person he loves most in the world change from one person to another with the forces adaptions of this disease. Best of luck to you both.

Caregiver here

AS a caregiver I understand the need for a safe place to scream. Recently my husband and I strong=armed through a rough patch with his meds and MS. The hardest thing to realize is that friends want to hear the good stuff, but often they don't want the runny nose and tears. I realized that I had no direct human to turn to.... sad.

On the up side, I turned to chat here. Wonderful supportive folks!

As caregivers we do share this awful disease. We get to watch the hard parts and then we can smile with the good times. Many days I live for the 5 minutes when my husband is himself, the man I love. The rest of the time... well, we work with it.

Caregivers are not super human, really. However, I must admit when I come to this place to scream, more often than not, I leave laughing with a warm and loved feeling.

Thanks to all who reach out and support our family in MSWorld!