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

[a_p_s_p_p]

Finally. Someone who understands. My husband was dx in 2000, tried a variety of meds but the MS was so mild at the time we decided the side affects were not worth the quality of life. About 7 years ago he hurt his back severely and could not do the job he had done for 15 years. He was able to migrate to another position but not without extreme stress. It finally caused a sever episode when he took a leave of absence.

He found another job making 1/2 the pay but that lasted less than a year. He has now been out of work for 5 month, extremely depressed and to top things off his back has started causing major problems again. Although he has not had any episodes since last year I can see the financial strain and the pain from his back is causing problems. He is extremely depressed, and when things get too rough his system just shuts down and he sleeps. This has been the most difficult week yet, I have yet to be able to have a decent conversation with him. Feeling very disconnected.

We have been married going on 20 years with 4 kids that need our love, attention and support. Some days it is just too difficult. Work gives me enough stress, home gives me more stress. Just doesn't seem like there is any light at the end of the tunnel. I keep reading that the "caregiver" has to take care of themselves too. HOW???? between work, the house, the kids, the finances, the doctor appointments and everything else how in the world do you find a way to recharge? OK my rant is over. At least for the time being.

[aitch10]

Hats off to the caregivers!

And feel free to ****** up a storm. This crappy disease really is something that affects the whole family, and not just the person with the diagnosis.

I think it's far to easy to get on the pity pot and think, "but you don't understand, Iiiiii'm the one who's sick. Now let me take out my frustration on you!"

I'm not particularly religious, but I thank God everyday for my angel of a husband and actually wish that he'd complain more.

But he doesn't. He's British

[kif8skip]

Caregiver Rants

I HEAR you ...... Thank you for saying this loud and clear...I appreciate your honesty .

I would like a place for caregivers only also ... and I am going to my first meeting in person for caregivers of our local MS Chapter...

I love my man dearly ,and this is all very new to us...and you are right there seems to be no where we caregivers can loudly vent...........our lives have been changed forever by MS also...we need support from each other also...

I have had to change my life significantly to accommodate the disease ......I have had to change my life's goals and dreams also .....for MS...

"Had to" -0kay did not have to -- chose to...where as my man did not "choose" MS ...I have chosen to stay with him.

I have been with my man for 4 years and he suffers from multiple disorders , with MS being the most recent dx on the list..as of last August ......it makes me crazy sometimes

MS is all encompassing it affects our whole lives..both his life and my life..one day at a time....

Peace ...

[zolar16]

I appreciate this rant. I tried this forum a few months ago after my husband told me about MSWorld and I got scared off. I really need to talk to other people about how to take care of their spouses with MS because we're both young and we're going to be dealing with this disease for 40 or 50 years based on a normal lifespan. When we got married, we both had our plans and dreams, and now MS has changed our future dramatically and we're still coming to terms with it. It's hard to be there and be as selfless as you can for such a long time. He was diagnosed 2.5 years ago and it's been tough, but I am in it for the long haul and I need someone to lean on. You are a really strong person for sticking by him for so long.

[Thinkimjob]

I work on the 'judge not lest ye yourself be judged' principle.

There's the Buddhist one about only saying what is kind, helpful and true. You can't always have them all together, or I, for one, would have to take a vow of silence.

I'd go with saying whatever you need to say, and don't worry about whether everyone agrees, or even sympathizes.

All the best to you and your husband.

[Nanobaby]

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.

I'm sorry that you haven't gotten the chance to rant as you needed to. I think that MS puts our caregivers through much more than us patients, because they have to deal with our crap along with the things that they have to deal with on a daily basis.

I'm grateful for people like you (ie my family), and I'm sure that your husband is too.

[Augusta Girl]

So true . .

This part made me tear up:

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.

Many times there are days and days in a row when I do not get to see the "real" him because of the disease. And I always say, "Hey! THERE you ARE!"

He always says he never left, that I have to get used to the other sides of him. He is afraid I will stop loving him if I only love the "happy" side of him.

I say, he has so many times that he gets frustrated with the disease and what it does to him, but he doesn't understand I get frustrated too. I'm allowed to be upset with the disease too, because I am living through it with him.

[Tinkerbell65]

I am fairly newly diagnosed, and thus far my DH seems to be handling things very well. I hope and pray though, that when he has his bad days he takes my advice to come here and vent. All of us need to be able to vent- feeling aren't "good" or "bad", they just are. I resent anyone telling me how I "should" feel so I would never tell anyone else- especially my husband- how he can feel. I hope when he gets mad, frustrated, sad or whatever, that he lets it out. Or it will just build up and make him crazy. We are in this together; the fact that I have the disease and he doesn't does not mean that I'm the only one that gets to feel whatever because of it. We're in this together.

I guess this is my long way of saying that if someone makes you feel bad for expressing how you feel, #**#@ 'em.

[BruisedNotBroken]

To the OP of this thread...you are my new hero! I have bottled up these emotions and felt so guilty for even feelinng them for so long and had no place to vent them!

I love my husband dearly. We have had quite the roller coaster and there are times when I feel I can conquer the world to stand and fight with him and there are times I want to run away from it all. He has went through all of the CRAB meds and now taking Novantrone which scares the hell out of me. He went from working a wonderful job to social security. I don't grudge that to him because he absolutely can't work because of physical condition as well as mental. But who does that leave to pick up the slack? Currently I work 3 (yes 3) jobs plus have 2 pre-teenage girls to keep up with. I am worn out physically, mentally and emotionally. That doesn't matter much though because I keep on keeping on. My marriage has now dissipated to me viewing him as a third child and him looking to me for everything. All family decisions are on me. Finances are on me. Daily tasks are on me. I am 36 years old and this is the rest of my life.

I have that vent and each thing is true. Yet I love him dearly and keep telling myself we will get to a place where we can exhale and it will be better. I will stand and fight beside him until the end. Just sometimes I feel my needs are not important, my thoughts don't matter and somehow I have just blended in with the wall paper until someone in this house needs something.

I have explored all of the emotions I wrestle with and haveno decided anger is at the forefront. I am not mad at him nor am I am mad at myself. I am mad at MS. I hate this monster. Wherever we go or whatever we do, MS tags along. There is no escaping it. I absolutely know that he is the one suffering mostly, he is the one whose body is changing and doing things that he can't understand but at the same time it's effecting me too. Nobody ever sees that.

[fromthesouth]

Thank you!

I have been coming to this site for close to 2 years now. My DH was diagnosed in 2006, he has tried Rebif, Copaxone and Tysarbi. There was once a while back that was going on with him that I posted about and the comments I got from people because I wasn't rushing him to the ER i was a terrible wife/caregiver. It was something mild and he was fine but you would have thought I was some horrible person neglecting him. We have been married for almost 30 years I know when something required. I trieds immediate help but they made me feel awful to the effect that I am a little afraid to post now.

The hardest part for me right now is adjusting to the part of having to be the one that takes care of us now. He was such a good providor, we worked well as team raising our children and starting a successful roofing company. In 2009 it became very apparent that he was unable to work anymore so he is now disabled. I tried to keep the business going but that is a very male dominated world and unfortunately I had to close the business in December. I am sorry this is so long but it is very scary out here when you go from being a partnership to the main person and not sure what the next step should be!

[Finnegan]

OMG. Thank you. I understand completely. I absolutely adore my partner but I too am very human. If you ever find a great caregivers' support forum I would love the information. I am a great Caregiver to a well loved (her term) woman who just happens to have MS. But I understand the need to blow off steam. Hell, that just means I'm human with all the emotions and frustrations that it entails. Thank you for putting my thoughts into words.

[Jules A]

Truth is if I had to pick I would rather have MS than be the caregiver. I can't imagine how you do what you do and totally support your need to vent!

[kif8skip]

Joey !

Sending you prayers and strength -

I can only imagine how difficult this whole thing is as a young family. It does seem like many of us "caregiver"/partners have many of the same issues despite our lot in life.

to Jules A I would definitely NOT want to be the one dx'd with MS - being the partner is hard enough but nothing compared to the one with the illness.....

[mrhick01]

Resonates SO much

Hello all,

This subject resonates SO much with me.

Where do I begin? My wife of 9+ years was recently diagnosed with MS, although she has been presenting symptoms of this disease for far, far longer...in retrospect, possibly going back as far as six years.

As I have started research this disease and how it ravages the brain and neuro, I can now say my wife was presenting symptoms when in the past, in those moments, I thought they were "marital problems."

It has affected her cognitive function and her short-term memory...this stupid disease has just wasted it. It has destroyed her ability to manage a regular day. She has been on medical leave from her job since March and she will likely have to take a disability retirement.

What do I mean by that? For the last two years, I've done most of the cooking (thank you Cooking Channel and Food Network!). I seem to be ice-skating uphill (both ways) when it comes to cleaning our home, I'm calling in a maid service to come by a couple of times of month to help us out (we don't have a lot of money, but this is an investment that has to be made). We have two small children (5 years and 18 months old) and our lives have been so radically altered...

...I just want to scream. I work about 50 hours a week on my main job, and I take a seasonal second job and part-time IT consulting on a contractual basis. We have a fair-sized house that I have to maintain, and I have nearly full responsibility of the outside and inside. I handle all of the finances now, my wife made some blunders (pre-diagnosis) that literally cost us thousands of dollars. She no longer can drive a car, I handle all transportation responsibilities...

I deeply love my wife. Unfortunately, I've lost the woman that I fell in love with. I know what I signed up for nearly ten years ago, so I will not leave her in the lurch. (I could not have a straying eye even if I wanted to right now...I'm too freakin' tired!) She did not ask for this disease, and I know she is sometimes terrified...I can only imagine what it feels like to feel like you're losing your mind, your husband, your children...despite this rant, despite my personal frustrations, I am there for her every step of the way.

I lament my losses. I lament the loss of my wife's ultra-positive, bubbly spirit. I lament the major setbacks to my personal and financial goals (in retrospect, my wife's symptoms have cost me two jobs). I lament the major setbacks to my own personal dreams and wishes for our life.

I fear for my own health. I have Type II diabetes, and I had challenges with high blood pressure and high tryglicerides (diet and medicine have helped get this under better control). Some dear friends implore me to take care of myself, to not let myself get burned out...but how? Nearly every waking moment is working, taking care of the kids, and making sure my wife is getting to her appointments and so that she can get ready to start her first monitored dose of Gilenya.

I do know I need to seek a private counselor to reconcile my personal feelings, and a couples counselor for us to find constructive ways of working through these challenges together. We do have some family and some great people that can help us with the children from time to time. I do know that I need to confront and deal with the growing frustration and sense of hopelessness that I have been feeling lately...

...a long rant, but thank goodness for a forum that exists for folks like this...thanks.

[Jules A]

Hello all,

This subject resonates SO much with me.

Where do I begin? My wife of 9+ years was recently diagnosed with MS, although she has been presenting symptoms of this disease for far, far longer...in retrospect, possibly going back as far as six years.

As I have started research this disease and how it ravages the brain and neuro, I can now say my wife was presenting symptoms when in the past, in those moments, I thought they were "marital problems."

It has affected her cognitive function and her short-term memory...this stupid disease has just wasted it. It has destroyed her ability to manage a regular day. She has been on medical leave from her job since March and she will likely have to take a disability retirement.

What do I mean by that? For the last two years, I've done most of the cooking (thank you Cooking Channel and Food Network!). I seem to be ice-skating uphill (both ways) when it comes to cleaning our home, I'm calling in a maid service to come by a couple of times of month to help us out (we don't have a lot of money, but this is an investment that has to be made). We have two small children (5 years and 18 months old) and our lives have been so radically altered...

...I just want to scream. I work about 50 hours a week on my main job, and I take a seasonal second job and part-time IT consulting on a contractual basis. We have a fair-sized house that I have to maintain, and I have nearly full responsibility of the outside and inside. I handle all of the finances now, my wife made some blunders (pre-diagnosis) that literally cost us thousands of dollars. She no longer can drive a car, I handle all transportation responsibilities...

I deeply love my wife. Unfortunately, I've lost the woman that I fell in love with. I know what I signed up for nearly ten years ago, so I will not leave her in the lurch. (I could not have a straying eye even if I wanted to right now...I'm too freakin' tired!) She did not ask for this disease, and I know she is sometimes terrified...I can only imagine what it feels like to feel like you're losing your mind, your husband, your children...despite this rant, despite my personal frustrations, I am there for her every step of the way.

I lament my losses. I lament the loss of my wife's ultra-positive, bubbly spirit. I lament the major setbacks to my personal and financial goals (in retrospect, my wife's symptoms have cost me two jobs). I lament the major setbacks to my own personal dreams and wishes for our life.

I fear for my own health. I have Type II diabetes, and I had challenges with high blood pressure and high tryglicerides (diet and medicine have helped get this under better control). Some dear friends implore me to take care of myself, to not let myself get burned out...but how? Nearly every waking moment is working, taking care of the kids, and making sure my wife is getting to her appointments and so that she can get ready to start her first monitored dose of Gilenya.

I do know I need to seek a private counselor to reconcile my personal feelings, and a couples counselor for us to find constructive ways of working through these challenges together. We do have some family and some great people that can help us with the children from time to time. I do know that I need to confront and deal with the growing frustration and sense of hopelessness that I have been feeling lately...

...a long rant, but thank goodness for a forum that exists for folks like this...thanks.

Hi and welcome.

I can only say I am so sorry for the losses your family has suffered and will likely continue to suffer from multiple sclerosis. I hate this miserable disease.

I definitely think counseling would be helpful in any capacity and also despite being so exhausted if you can force yourself to exercise I believe it will help not only your mood, stamina but also your blood glucose regulation.

Maybe consider not allowing MS to dictate the quality of life for you and your children? I get that your wife requires a fair amount of assistance but again I wouldn't allow it to ruin the rest of your family's quality of life. I wouldn't want that for my family and can only guess your wife wouldn't either. Hang in there and please keep us posted. You truly sound like one of the good guys.