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NeedHope
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/14/2009 10:58 AM (GMT -6)   
My daughter in law was diagnosed with MS this year and married shortly after the diagnosis.  She recently had a catheter inserted because she can't empty her bladder.  Her employer told her to stay home until it was removed and she felt better.  I am not sure if her attitude might have had something to do with her employers reaction.
 
My son is really trying hard to be supportive and so am I.  I am just not sure what I should and shouldn't do.  I don't want to start out wrong with a new daughter in law.  It can be hard with no health issues.  Right now she just seems content to lay on the couch and watch TV.  She is having trouble keeping food down and is getting weaker by the day.  She says she thinks a lot of it is probably mental.
 
Any suggestions.  I feel really sorry for both of them, but the MS isn't going anywhere and I think they have to learn somehow to deal with it.  We thought after the wedding she would start to do better, but so far she seems to be getting worse.
 
I don't have MS so I don't want to judge anyone.  I just want to help in any way I can and I thought maybe you might be able to point me in the right direction.
 
Thanks

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/14/2009 7:42 PM (GMT -6)   
Please contact a local chapter of the MS Society.  They can help in many ways.  They may be able to offer free or low cost counseling for all of you.  They will be able to advise you on to how to deal with this.  One of the major symptoms of MS is chronic fatigue as well as depression. 
 
I also don't want to judge but you certainly don't sound too empathetic.  Remember that MS is incurable and in nearly all cases is progressive.  What your daughter-in-law has is not going to get better.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


NeedHope
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/15/2009 7:05 AM (GMT -6)   
Thanks for your suggestions.  She won't talk to anyone.  Since she was just recently diagnosed I think it will take some time before she will even think about a support group.  I suggested it but she says she doesn't want to be around "those people".
 
I know that the MS isn't going away.  Sometimes "tough love" works.  I think right now everyone is walking on egg shells (me included) and I really don't think it's doing her any good.  
 
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/15/2009 7:06 PM (GMT -6)   
Yikes!!! Really?  She is recently diagnosed and you are considering tough love?  The first year of my diagnosis was HELL and I was a mature 43 year old with a full time job and a family to care for!  I am very very glad I had the unconditional support of my family and no one tried tough love on me. 
 
She sounds severly depressed to me.  When you are diagnosed with an incurable, progressive disease it is a very scary thing!
 
Ask her what she thinks would help.  Ask her what she needs from you.  If your son and or your daughter-in-law has mental health benefits, see if she would like to try therapy. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1441
   Posted 9/15/2009 8:29 PM (GMT -6)   

 

OMG!!!  Tough Love?????  How insensitive!!

Please, Please, may I suggest that you get as much information about MS that you possibly can before you start judging your daughter in law? 

I can only imagine what could be going on in her mind right now.  What she needs is support from her family.  I understand that she is not ready to seek support but why not consider some for yourself so that you can understand the depths of this illness.

Maybe you could read more posts on this forum from those that suffer from this disease and there is also a resource information post at the top of the forum that you can click on for  more information.

Keep us posted on your daughter in laws progress and if we can be of any further help for you.  blush


~sukay~
 Bipolar - 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 
 
Leo Buscaglia


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/16/2009 7:23 AM (GMT -6)   
Sukay,
 
Your quote says it all!
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


NeedHope
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/16/2009 8:44 AM (GMT -6)   
 I think I came to the wrong place for help.  You don't know me and I feel like I am being attacked.  You are assuming an awful lot from my posts.  I can see why my daughter in law doesn't want to talk to people.
 
She has had the diagnosis for 5 months.  I know that isn't long and it just plan sucks that this happened to her. 
 
Her mother told her to quit her job, cleans her house, is writing thank you notes to people for things they have done he help her out, etc., telling her to just sit there until she feels better.  She can write, she can walk, she can talk on the phone.  She isn't helpless I have tried to get as much information as possible.  I have talked to people that know people with MS and they all tell me that she needs to keep as active as possible and try to live as normal a life as possible.
 
I just can't tell her to sit at home and feel sorry for herself.  I don't think that is a good message for anyone.  She needs to feel like she has a purpose and that she is a useful person.  I think she needs encouragement to do things not do everything for her. 
 
Thanks for taking the time to give me your opinion.  I really do appreciate your comments.  I think you think I am cold and heartless.  You are so wrong.  I just don't think sympathy is what she needs.  I think she needs encouragement to take one step at a time, but the steps must be forward and not backwards.  She needs to know that we are there for her, but she also has to keep living and not let MS kill her life.
 
Thanks again, but I think I should look elsewhere for help.

sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1441
   Posted 9/16/2009 9:50 AM (GMT -6)   

 

NeedHope,

I'm sorry if you feel you were being attacked. We are here to offer support. I'm sorry that you are not accepting to our advise.  IMO Gretchen and I have given you some good ideas to consider and I wish you will think a little longer about them.

We do not think you are cold and heartless as you said.  You keep saying that she does not need other's sympathy.  I don't believe that is what she wants from anyone.

You had said, "She can write, she can walk, she can talk on the phone.  She isn't helpless"

This sounds very much like depression and telling her to get up and start moving and doing things and talking with people isn't the way to help someone with depression, especially at the beginning.  Is she currently on any medications?

We are not trying to be mean.  We just believe that no one truly understands what it feels like to be stricken with a disease in it's depths until it happens to them...they can only see it's effects on the person.

Illness does affect the whole family. But in order to be as supportive as you can, you need to get as much knowledge about the disease as you possibly can to understand all the aspects of the disease so that you can be supportive in each and every step in the progression of the disease.

Right now your daughter-in-law's world has been "Rocked" in a totally new direction.  You might consider starting to learn more about the affects of depression on a person in it's beginning stages.

Wishing you much peace.


~sukay~
 Bipolar - 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 
 
Leo Buscaglia


tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 9/17/2009 7:57 AM (GMT -6)   
If you would like any advice, I would be more than happy to talk to you.  I became sick 6 months after I was married, at the age of 22. It is a huge life changing experience and I understand it from your daughter-in-laws perspective and can maybe help explain what she is feeling and what would be useful. I would tell you however, that eventually I was re-diagnosed with a brainstem encephalitis and not MS. But at first they did believe it was MS, and I spent 4 months in rehab not knowing if I was ever going to get back to the way I was prior to my first big hit.  You daughter-in-law is most likely very depressed and scared.  I know I was terrified at first, not knowing if I was going to be one of the people with MS that lived a semi-normal life (which I was OK with) or if I was going to be the one that was in the wheelchair 10 years down the road unable to do the things in my life that I wanted to do.  It's a scary thought. She probably does need to talk to someone.  It's hard to share those fears with family because they don't want to think of those scary thoughts just as much as you don't.  I actually do agree with you though, she does need to get active and not feel sorry for herself but get back on her feet and live with the hand she has been dealt.  For some people, this is easier said than done.  I can't speak for her that this could take her 5 months or 5 years.  What you could offer is to go with her, or drive her to talk to some one.   This would be a good first step because she does at some point need to get back on her feet, especially while she is still fairly healthy.  It's an unpredictable disease, so take each healthy day as a blessing!! That was my motto when I was first sick.  My first 6 months were full of semi-good days and terrible days, so the good days I had to do something special.  She needs to feel that she still has a lot to offer the world, not that she is just "sick". If you don't feel comfortable talking to her yet, start a conversation with your son and offer some help, let him know that you are willing to help her get back on her feet emotionally and see what his thoughts are.  Just let her know that you are on-board with helping.  My in-laws drove from TN to IN every weekend I was in the rehab hospital to give my parents a break and just be there with me. (My husband is military and was gone at the time.) It meant a lot and brought us all closer for them to be there in my time of need.  Just let her know you are there and want her to get better and she needs to work on her emotional health right now.  Sorry so long, but I wish you all the best! God bless!
23 years old;
Dx: Acute Disseminated Ecephalomyelitis (ADEM) Feb 2009
Meds: Provigil, Nexium, Lexapro, Adivan, Lopressor, Baclofen, Topomax
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


NeedHope
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/17/2009 2:53 PM (GMT -6)   
tkeys,
 
Thanks so much for  sharing your thoughts and experience with me.  It gave me a lot to think about.  I will be seeing my daughter in law tonight and hope I do and say the right things.  I love her and only want to help.
 
Thanks again.  You are the first person that really has helped me.

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 9/18/2009 7:23 AM (GMT -6)   
Needhope,

I hope everything goes well tonight. If you say something, I hope it's the right thing and she takes it the right way. If it doesn't go well, brush it off and just tell her you are just trying to offer whatever she needs and to let you know when you can help and just leave it at that. Then maybe wait and it can be approached later. If she isn't receptive yet then I wouldn't push it. Maybe just talk to your son privately and see what he is thinking and feeling about the situation. He will know best since he lives with her and I'm sure she opens up to him the most. I have a friend with MS and she is in her 50's and still works full-time and is active but her cousin also has it and she is very inactive, not so much due to the physical part of the disease but I think she may have depression and emotional issues. I know it will take time but if when she becomes active again and deals with it emotionally and begins to feel better, it will help her cope with this disease and her family cope as well. Good luck!!
23 years old;
Dx: Acute Disseminated Ecephalomyelitis (ADEM) Feb 2009
Meds: Provigil, Nexium, Lexapro, Adivan, Lopressor, Baclofen, Topomax
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


sandfly
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 9/19/2009 1:38 PM (GMT -6)   
I was wondering if Needs Hope realizes what an impact a diagnosis of MS can do to someone. Maybe your daughter in law is still in shock and trying to cope with the new diagnosis. Tough Love is the last thing she needs right now. Nobody with MS needs tough love. I was diagnosed 16 yrs ago and was in the middle of a riding career. I took the diagnosis with a grain of salt - it didn't exactly help me cope either. I am out of it completely and it's just hitting home that everyday is getting harder for me to even lift my feet to wolk let alone ride. The pain is constant and severe and you could try tough love all you wanted but when I'm fried and can't move it won't help me. We don't want to be helpless, matter of fact we hate it. I have things that sit there unfinished while I can't get to them.
MS has totally destroyed my dreams and my life. as I knew it. Yes, I did find other hobbies, but some days I can only sit and vegetate, the nights are long because the pain keeps me awake. Yes, I do take pain meds but they only help so much.
 
Your daughter-in-law isn't looking for sympathy, but maybe a little empathy, we can all use some of that when we feel like we've drawn our last breath, try it and see how she feels about that instead of the tough love. Your son should also try waking up to the fact that life is not the same for his wife no mattter how much she wishes it could be...been there done that...doesn't happen.

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 9/19/2009 3:46 PM (GMT -6)   
I think that she has gotten the same response from just about everyone now and understands, maybe it was a mis-communication. We should all assume that since she is hear asking for advice she is well intentioned and just trying to determine the correct approach to this new situation with a new daughter-in-law. I think this is a place for help and it is great that she has taken the initiative to try to seek out resources to find people to help her learn about this disease from and try to help her daughter-in-law in the appropriate manner prior to approaching her. Kuddos for seeking advice from others who know better than youself!
Be completely humble and gentle; be patient, bearing with one another in love.
Ephesians 4:2
 
23 years old;
Feb 2009 Dx: Acute Disseminated Ecephalomyelitis (ADEM)
Aug 2009 Dx: Brainstem Encephalitis August
 
Meds: Provigil, Nexium, Lexapro, Adivan, Baclofen, Topomax
 
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


sandfly
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 9/20/2009 5:44 PM (GMT -6)   
You're right tkeys, I keep forgetting that unless you have ms yourself it's really hard for others to walk in our shoes. I think part of the reason is that we all look the same, some of us look darn healthy as a matter of fact. If strangers meet me I don't think they would have an inkling that anything is wrong just by looking at me unless I'm in my wheelchair or have my SD with me.

Sorry if I sounded abrut Need Hope, sometimes I forget how we might look a bit lazy to some. For now just be there for your daughter in law and try to help in a way that doesn't make her feel helpless, for me that's what makes me feel bad, if someone assumes I can't do something like putting clothes in the washer when I'm already doing it...pride I guess. What we really want is to be treated the same as anyone else but we do appreciate the help we get. Maybe for now she prefers to not talk about things, but if she needs a shoulder to cry on please just be there.

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 9/20/2009 6:20 PM (GMT -6)   
I'm sure we all have those days when people say "Oh you are looking good" or something and we feel like crap!! I did when I was dealing with my illness and still with my recovery. MS (and any neuro disease really) is a crazy disease physically and hard to wrap your head around if you have it or just know some one who has it! Wishful thinking that something is on the horizon for everyone out there that can help a lot of people in the near future :)
Be completely humble and gentle; be patient, bearing with one another in love.
Ephesians 4:2
 
23 years old;
Feb 2009 Dx: Acute Disseminated Ecephalomyelitis (ADEM)
Aug 2009 Dx: Brainstem Encephalitis August
 
Meds: Provigil, Nexium, Lexapro, Adivan, Baclofen, Topomax
 
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


Lost and Lost
New Member


Date Joined Oct 2009
Total Posts : 19
   Posted 10/17/2009 6:01 PM (GMT -6)   
I would like to say to the father in law. I was diagnosed a year into my marriage and I honestly thought I was going to die. With a new husband and two children I was so lost I didn't know what to do. Give the chance I probably would have sat on the couch and slipped into depression. I have my moments and today is one of them so I came here. I am remembering how to fight this by reading these post. I did not want to go to a support group I wasn't sick I said. now 4 years later I am a co-facilitator for a local group. The one thing that stands out in my mind that was said to me when I first got diagnosed was from my father, a man I love more than life it self. He hugged me and said "CRY, SCREAM, GET MAD, AND IF NEED BE CRY SOME MORE, BUT WAKE UP IN THE MORNING AND FIGHT!! YOU HAVE A LIFE FIGHT FOR IT YOU HAVE A FAMILY TO FIGHT WITH YOU, YOUR NOT ALONE". He couldn't have been more right. To this day I have my up's and down's and sometimes I wonder "WHY" then I remember I have a life a wonderful life and I am going to fight for it. So with that said my advise to you is be there for her, let her know you love her. Remind her of why she should fight this and that she is not in this fight alone. Remind her, have others remind her of her value and all that she can do. Tough love is not the answer I don't think but love is, understand is and most of all support. I hope I have helped you a little in your quest for information. God bless you and your family and my thoughts and prayers are with you and your family.


Lost and Lost Diagnosed in December of 2005 "God gives us only what we can handle"

NeedHope
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 10/21/2009 2:58 PM (GMT -6)   
Thanks for all your help.  My husband was having tests and an MS support leader happened to be in the waiting room.  It was like it was meant to be.  She was very understanding and helpful.  My daughter-in-law wants no part of a support group, but I am going to start to go to meetings next year.  They are having special activities the rest of this year and I think it would be better wait until then.  I have her phone number.  I thank God I that I have met her.
 
My daughter in law is doing better and going for physical therapy but has a long way to go. 
 
The support leader told me that my thinking was on the right track and just to be there to help and encourage her to get back to living.
 
Just thought I would give you an update.

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 10/21/2009 9:24 PM (GMT -6)   
Glad to hear! Hopefully the PT will help her get back some of what she lost. Who knows, maybe by early next year she may want to try out the support group? I think it will be good for you to go! God always has nice little things like that happen... :)
Be completely humble and gentle; be patient, bearing with one another in love.
Ephesians 4:2
 
23 years old;
Feb 2009 Dx: Acute Disseminated Ecephalomyelitis (ADEM)
Aug 2009 Dx: Brainstem Encephalitis August
 
Meds: Provigil, Nexium, Lexapro, Adivan, Baclofen, Topomax
 
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 10/28/2009 10:19 AM (GMT -6)   
Hi there and good morning.  I certainly am glad that this thread turned around to the postiive instead of the way it was going when Need Hope was looking for some help.  So the phrase "tough Love" was used, no reason to jump all over this person, and no wonder the person was thinking that this was not a very nice place to be...to call this person insensative was un- called for...
Thankfully tkeys stepped in and offered advise and assistance - which was the positive turning point in this thread....
 
Yes we all have our share of hardship with MS, but so do the people who love us and stand behind us when we need them.....its tough sledding for the ones who support us...
 
Sometimes we need to be gentle and nurturing, and others, well, need a good kick in the ..... to get them kick started......everyone is like MS itself, everyone is different, and everyone needs a different approach to get them on the road of recovery.  
 
so the next time someone happens to mention "tough love:, and before you jump all over this person, first of all understand first what the person means by tough love, and then remember that everyone is different.
 
Had my wife not kicked me in the .....  a couple of times along the road to my our sucess (that being me and my wife"s)  I too may be still laying on the couch watching TV....... our support people need a life too!
 
Have a nice day
Gary

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 10/28/2009 11:37 AM (GMT -6)   
Well said! Glad you are on the road now :)
Be completely humble and gentle; be patient, bearing with one another in love.
Ephesians 4:2
 
23 years old;
Feb 2009 Dx: Acute Disseminated Ecephalomyelitis (ADEM)
Aug 2009 Dx: Brainstem Encephalitis August
 
Meds: Provigil, Nexium, Lexapro, Adivan, Baclofen, Topomax
 
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


leresch
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/28/2010 4:49 AM (GMT -6)   
 
 
    Dear NeedHope,  (Please Read This!!!)
 
 
             Wow! I read all the posts here & then I re-read them. I want to first start by saying: I feel bad that you felt you were being attacked,  but I also understand why you felt that way & here's why: I was absolutely DEVASTATED when I heard you say "TOUGH LOVE".  I WAS IN SHOCK! I will "NEVER" get over the day I was diagnosed with MS 12 loooooong years ago. It's indescribable to others. Rather than going on & on about all the details, I also want to HIGHLY COMMEND YOU. You displayed unbelievable courage, concern & support to return to a place of the unknown to you. Your daughter in-law is in "shock" & undeniably depressed as I was,  & she will have ups & downs with that probably for many years as I still struggle with at times to this day. Try not to push the issue as she tries to cope with this. "Just be there". That's all! I have no family, but I have a wonderful boyfriend & his mom is my rock. She once said to me: We're in this with you!...Got my thoughts off of me & MY situation that day. Don't assume your daughter-in-law is feeling sorry for herself just yet. She doesn't know what she is feeling. I was in that position as well. I am in a good place right now where I accept what it is & I have no choice but to take it one day at a time. But it took me a looooooooong time to get here. Don't EVER give up on her. She needs you so bad. She needs all of you. I am greatful to god for my boyfriend & his mom. I tell her all the time how much I love her. Don't expect her to just start talking cause it's not gonna just come out. She doesn't know what to say or feel right now. I'll never forget the day my boyfriends mom said to me: I'm learning as much as I can about MS so I understand. That's when I realized just how much she loved me. It was incredible. I also remember the day she said: I don't know what to say?,.....I said: I don't need anyone to SAY anything. I just need to know they are there for me. You seem to be doing everything she was doing for me. You are a wonderful person. She will realize that in time. I didn't want to talk to anybody either. I just wanted to jump in a hole & pull the dirt over & call it a day. I feel for all of you. Please come back to the site. For her sake I am thankful that you did. I hate that I have MS & there's no way to make it go away. p.s. I was diagnosed at 26 yrs. old. I just turned 38. I'm shocked to this day! I truly opologize if any of our words have made you feel bad. As much as we are ALL here to learn, I think I speak for most MSers when I say we are frustrated by what we have to deal with everyday. Thank You for listening & please keep doing what you are doing. I know this is not easy on you either. 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 2/28/2010 11:08 AM (GMT -6)   
Hi leresch,
 
I am enjoying reading your posts.  You have a lot to offer here with your experience.  I was wondering if you could do me a huge favor.  When you type a post, could you please break it up into smaller paragraphs?  I have trouble with tracking and I had a heck of a time reading your longer posts that were a solid block of text. 
 
My eyes get lost when I track back to the left.  Thanks so much!!  I look forward to reading more from you.  I am so glad you found solid support from your boyfriend and his mom.  I was very touched by that. 
 
I hope the copaxone works for you.  You have certainly been though the wringer with meds!  I felt the same way about avonex.  I took one look at that needle and said, "no thanks!!".  I have had it easy with the copaxone. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


leresch
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/28/2010 8:27 PM (GMT -6)   
 
  Gretchen,
 
         No problem, I will do that. I see what you are talking about as I re-read my post just now. I love this site you guys have here. It is very helpful/informative. See ya soon on the forum.  =) 
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