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

[sheli18]

I would just add a word of caution about the "rants". Every caregiver needs to have someone to vent to and that is exactly what this forum is for, maybe even talk with a pastor or friend and let it all out! However, do use good judgement when talking to your loved one with MS. It is very hard dealing with the disease, but I would say just as hard to realize that you have, in many ways, destroyed the lives of the ones you love the most.

It can even put thoughts in your head that maybe they would be better off if you weren't around at all. You need to express your honest feelings, but try to avoid placing the blame on that person who also did not choose a life of MS. No one knows unless they live under the same roof what it is like for the FAMILY living with MS. Good counseling for both parties can be invaluable.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Drinian23]

I feel so guilty about my personal sufferings vs. mom. I mean she's the one stuck in a body that won't move. She's the one in pain daily, and doesn't even know the meaning of the word "comfortable." She's the one who had her life stolen from her.


I'm the one that gave up the life my son and I had together. My available time to spend with him is a tenth what it was.

I can't ever go anywhere without fear an aide won't show up (which happens allllllll the time.) I'm in a constant state of worry and stress, which in turn affects everyone in the house.


People say how great it is that I take care of my mom, but I wonder sometimes if I'm not doing her a disservice. I'm a diagnosed bi polar (that does take my proper meds, they just dont work all the time) at 35 and still live in the same house as my mother. I'm climbing the walls tring to reach for that life That I will never have again.

I don't want her to die. I really don't. I don't know what I'd do without her. There will be this empty place left in my heart forever, and the regret of all the fights would linger in the back of my mind every min. of every day for the rest of my life. Was it me that made her life harder than it already was? Why can't I keep my temper cool when I know how hard it is for her?

Do any of you care give for that MS person that has to have everything EXACTLY a certain way. Or has you move the same thing 30 different ways and then it ends up back where you started? Then there's the walk and breath thing. Mom wants to help so badly, but all she can do is talk.... soooo she talks. Then she gets snippy remarks after awhile about how she doesn't need to be telling us how to walk and breath. Guys I just don't know what to do. I think I make her life harder than living in that awful home. I think she's glad I'm not home most of the day, but she'd never admit it.

Am I alone?

[Jules A]

Am I alone?

No you aren't alone just in a very difficult position. Please consider getting counseling to help you deal with your Mom, your diagnosis and motherhood in general all of which can be stressful. There are free services in most cities if you have financial concerns. I'm particularly concerned about your BiPolar becoming very hard to manage with such a huge stress load on your shoulders.

There are nicer nursing facilities than where you Mom came from, have you considered finding one close by where you and your son can visit often? I have cared for people with MS in an acute hospital setting along with a team of professionals and have to say it really isn't something most people can do alone. To me that doesn't lesson your loyalty or love for your Mom it is just another sad truth many of us will have to accept thanks to MS.

Personally I would prefer to have someone who is being paid to care for me do it than my family members even if that means living in a less than nice facility when I can't care for myself any longer. Life in general is too hard to set yourself up for failure and trying to care for someone with end-stage MS alone is just too hard imo.

[Drinian23]

She gets government aid. Which is kind of a joke. If I weren't there to pick up all their slack, she'd be left with no food or water for days, not to mention the personal stuff that would build up.

The place she came from is one of the "best" around. I swore to her on my life I'd do whatever it took to keep her out of a home. I would never allow her to go back to one, no matter the cost.

The problem comes when it's time to pay for those words. My mental issues (I can't believe I"m telling you guys about this) seem to be the hardest when sudden emergencies happen. I can deal with any one elses problems fast and efficiently. I'm former Coast Guard for goodness sake. This should not be so hard. When it comes to me and and the issue is mine to fix or others are hurt, I panic just a little. When you're facing "If I don't do it, it don't get done", the para-dime changes.


All the support in the world doesn't change the fact the buck stops with me.

I'm also worried that the mind slips mom can have are going to get worse. We've been facing these slips for about 18 months. Memory loss mostly. I can take and understand the instant memory loss (I forgot what I was going to say) but when it comes to remembering things wrong I start to get wound up.


This is my mom. I see her as infallible like all kids do. This is messing with my head watching on a daily basis what happens to her. The families that just stick the sick member in a home and dont have to see it every day, have NO IDEA what it's like to watch someone that you ran and played with as a kid, be twisted and in agony every day.

For you folks that can still walk, treasure every step. And don't let people "help" you do things that you can do. It may be difficult but you MUST do them. They will slip away from you, never to return if you don't hold on.

[Paloums410]

DH has MS for over25yrs. He believes no one has MS like he does. he doesn't get that we suffer just as much, just differently. His Cog Fog is much worse and of course I am the reason for this. He can't believe he is capable of being heartless. He makes a mistake it's my fault.
We have to rant or we will all be checking into a psychiatric hospital.I don't blame him,but why he doesn't believe me I don't know what to do.
MS Sucks for all involved.

[Mynamegoeshere1]

I have MS

I know this thread is kind of old, but I was diagnosed within months after getting married to my husband. We were together for 3 years before getting married, but still, it came as a complete shock. My husband actually got really angry because I gave him an opt out because I knew his life was going to be drastically different one day. Little did I know that my MS was going to drastically decline within the first year. I am in a wheelchair if I have to go anywhere where there is any length of walking longer than 5 minutes now (best way to measure for me).

I am a very empathetic person and I feel so bad for him. I am on disability and he works all day to support me. He then comes home and does other things to help me out. I feel very badly about this. He swears he doesn't mind, but every once in awhile, it does get to be too much for him and he lets it show. Then he feels guilty for it. I don't know how he does it though. He is an angel in my eyes. All of you caregivers are! Rant away! You guys are dealing with MS as much as we are, just in a different way than us and I love reading it from yalls perspective!

[Jules A]

I don't know how he does it though. He is an angel in my eyes. All of you caregivers are! Rant away! You guys are dealing with MS as much as we are, just in a different way than us and I love reading it from yalls perspective!

I agree 100%!

[Mynamegoeshere1]

@Jules

@Jules,

I keep asking my husband to make up a strange username and sign onto msworld to view or communicate with the other caregivers. I know I can be a bit of a nuisance at times. On days that I feel ok, I try to spoil him. He feels like on the days that I feel well that we should do whatever I want to do because I feel well enough to do it, but I insist that we do something for him in my appreciation for him. Sometimes I do not know how he puts up with me! I can get pretty darn cranky when I am hurting even when I try to hold it in. God gave me a gift with him and I know I made a LOT of mistakes in this life, but I must have done some really, really good deeds too for him to find me worthy of such an amazing man!

[Wordsgood]

Thank You to ALL Caregivers

Hi folks. I know I'm dragging up an older thread here, but I just really felt the need to pop in and remind folks that spouses and other caregivers are our the unsung hero's in our lives.

From the bottom of my heart, I thank all of you!

[mmorrison]

An old thread, but oh so necessary! I scream in the car, and I've written a letter to MS. That helped a lot. I probably need to do it again. We all know our significant others' can't help their symptoms, but somedays I just want to scream. I get tired of being the thinker, the planner, the doer, and the nurse. I get tired of asking "Did you do your stretching today?"

I get tired of answering, "How is Matt doing?" I've started being a smart and saying back, "Well, do you want the truth or do you want to know everything's good?" Most don't know how to respond, and I guiltily admit I get a bit of satisfaction out of it. I even said that to my 80 year old grandma a few weeks ago! Luckily my family has a good sense of humor and her response was, "Oh, we don't have to talk about him! How's school going?"

I don't even want to mention new things we're trying to anyone because nothing ever seems to work and then we have to justify and tell why something didn't work afterwards when they ask. It's just too much all the time. I want our old life back. I want to be able to go to a football game or concert and not have to mess with getting a too-big wheelchair into a too-small car. I want to take him places with me, but we just can't do the same things together anymore. We were active people. It's very sad. I just didn't expect this at 39.

And on top of it all, the cognitive fog just makes things 100 times worse. How can I expect him to be aware of anything if his brain won't let him? I'm still in denial some days, acceptance at times, grief at times; does anyone know if this roller coaster ever evens out? Just typing all this is helping, and reading everyone else's posts. At least we're all in this together, good and bad. Thanks to all of you for understanding.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Wordsgood]

Hi Mmorrison! Believe me I get what you are talking about. I've been the caregiver more times than I can count and now I'm stuck on the other side of things.

My cog fog and all the other issues impeding my independence are having a HUGE negative affect on my husband's own personal well being. Almost everything is completely on him and the strain is showing. I find myself constantly apologizing and he tells me not to worry as he knows I can't help it, but I still feel like crap about it because I DO know exactly what he's going through.

Wish I could offer you a solution, but please do feel free to vent. I'll listen and I'm sure I'm not the only one who will! Sending you big Hugs!

[HopefortheMoment]

This totally made me tear up - it's so true. "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."
I am a close friend of a wonderful man with MS, and have only known him for the last couple years, after he had a huge relapse. I was one of those crazy nurses who got to know her patient as a real person with hopes, dreams, and a vivid past, not just a number in a bed....(that, as I have found out, is a very dangerous discovery to make). He is no longer my patient, and I have the privilege of being his close friend and sort-of caregiver.
Those "5 minutes" don't happen very often, but when they do, my entire heart smiles, because I get to see the man I've never really met, but who i know is inside the man I care about, and longs to be free from this crazy thing called MS. I treasure those times...where he cracks a hilarious, well-timed joke, or converses clearly about something, shares insight, or tells a story I haven't heard 25 times.

[Jordan Ross]

beautiful.beautiful.beautiful. J

Beautiful. Beautiful, Beautiful.
It made me tear up.
Jordan

This totally made me tear up - it's so true. "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."
I am a close friend of a wonderful man with MS, and have only known him for the last couple years, after he had a huge relapse. I was one of those crazy nurses who got to know her patient as a real person with hopes, dreams, and a vivid past, not just a number in a bed....(that, as I have found out, is a very dangerous discovery to make). He is no longer my patient, and I have the privilege of being his close friend and sort-of caregiver.
Those "5 minutes" don't happen very often, but when they do, my entire heart smiles, because I get to see the man I've never really met, but who i know is inside the man I care about, and longs to be free from this crazy thing called MS. I treasure those times...where he cracks a hilarious, well-timed joke, or converses clearly about something, shares insight, or tells a story I haven't heard 25 times.

[Barbkane]

I can relate to the caregiving. Thirteen years ago we had a two year old and a newborn. When our baby came home, it was with a g-tube and a pump to feed him, and a trach tube and equipment for him to breath. Hubby and I had to quickly learn to work as a team.
Luckily, our son is doing better, but we still deal with life threatening seizures and the g-tube for feeding.
When I started having issues, I really worried about hubby being a caregiver to our son, as well as me.
So I know both sides of it, as a caregiver, and a person with probable MS. Us caregivers are not super human. We hate MS, we hate what it does to our loved one's life, and our lives too.
I run into people who think I should always be happy and positive. Sorry, but that is unfair to expect us to do everything we need to and do it with a smile everyday. I do love my son, and I know my husband loves me, but we hate MS, and 2p- syndrome ( my son's dx).
It is hard for caregivers to be able to vent, because then we are seen as selfish, uncaring, and insensitive.
I'm super aware about making sure that hubby has his breaks, and chances to do things with his friends so he has a place to vent. I guess our son's life has been a good lesson in caregiving for us.

[amielzbth]

Hello all...

So its been a while since I posted. My husband and I have been married a year so far. Its been a challenge with both the MS and his addiction. Things have been interesting to say the least. I will go with both bad and good here...

Bad News:

My husband's job sucks. Well, his employers do...or did at this point. He was a working licensed pharmacist for over 12 years. He worked for this specific pharmacy for over 10 years. They treated him horribly as soon as his health began to deteriorate. He was unable to get things done fast enough. They had meetings with him only to basically intimidate him. He was expected to fill the prescriptions, give clients Flu, Shingles and Pneumonia vaccinations, file the prescriptions, and check to see what mistakes the techs made all in ample time. The man uses a cane which barely helps him to balance and the bioness wasn't exactly doing the job for him. He lost sleep with the stress he was under and the stress made his health worse.

Good News:

My husband retired from that caca place in January 2013. He still gets paid by them via their disability. He also filed for Social Security Disability this month (February 2013) and was accepted today. We are ecstatic and shocked considering the horror stories we heard about how people often get declined the first few times. It was the fact that he had an encyclopedia's worth of medical records dating from 2008 (year of dx) to the present. Needless to say we are thankful and celebrating!

Bad News:

My husband started a new drug called Gylenia and was monitored for six hours yesterday at Weill Cornell. His heart rate dropped quite low, but then went back up again. During this time he was officially diagnosed with A-typical PPMS which is probably why treating him as been a real

Good news:
He started Gylenia! And is going to more and more meetings regarding his addiction.

So that's basically it for now...

Ami