Family reactions to MS

[monotreme]

I was wondering if any of you would be willing to share your experiences with your family members and how they deal with MS.    Craig is in limbo without a diagnosis.  However, he does have spasticity in both legs and his walking distance is limited because of pain.   He also gets pain in both thighs when he stands more than 15 minutes.


Craig has two brothers, both older than him.   One had been helping with some chores around the house that were difficult for Craig to do.   However, when he began to see that Craig was not getting miraculously better, he told me that Craig's disease "is what it is" and I need to move on.  

He went on to say that I should take my kids on trips without Craig and in some cases lie to him and go somewhere for a day on the premise that there is a homeschool activity, when there actually is none.   He proceeded with more pep talk and told me that I am not a good enough mother because I am encouraging my children to make adjustments for their father's limitations.   Instead, he said that I should take our kids to Disney, Williamsburg etc without their father and let them enjoy themselves without their dad holding them back.   Of course, he doesn't offer to pay for these trips for six kids who have a father who works every day in pain to keep an income coming in to the family!!!

This same brother also recently told my children how happy and good it felt to not help their father two weeks ago when we needed to do yard work.

Is this common in families with a member who is limited in their ability to do things that require physical labor??  Do families just give up and decide that it is too much trouble to help??   Needless to say, this brother is not welcome in our house right now and our children are glad to not have him around.   Craig is terribly hurt by how his brother is treating him.  

If anyone is willing, could you please share your family reactions to your illness??

Thank you.
Elaine

[Quixotic1]

I echo everybody's thoughts.  I personally think you could "off" him and plead the "Texas Defense.:

"But..., Your Honor, he NEEDED killin'!

Q :))

[monotreme]

Thank you all for your thoughts and support.  It is really appreciated.  I have been feeling more and more alone in this battle with Craig.  However, I am getting some vitamin deficiencies taken care of and feel stronger now in letting "toxic" people go out of my life.

Like Aura, I had a parent (my mother) tell me to stop taking Craig to doctors and just let his disease go.  After all, he doesn't really need help, does he??  I had to put her in her place too.  Maybe he can't get a diagnosis, but he sure can get physical therapy and medications!!!

thanks again!!
Elaine

[aura3]

I am so sorry!! Some, just don't get the big picture!!

My Brother was diagnosed in 2002.  He doesn't live near me, but his diagnosis brought us closer together.  I was worried for him and wanted to do everything I could do from a distance.  My Sister on the other hand was less then helpful and understanding.  

Everyone handles these things differently.  

Needless to say my sister has come around my brother has been lucky enough to be in remission for several years now.

I am going through something very similar that he went through back then.  I have overwhelming support of my family, Husband and young children.  All wanting to take care of me.

But I want my husband to take the kids and out and do something fun every know and then, I don't want to hold them back.  Yes, I wish I could go with them like it use to be, but it is not.

My Mother is overbearing wants to help a little to much and insist that it has nothing to do with her that 2 out of 3 of her children have issue that are similar to one another. My dad thinks I should let my symptoms take there course and not to be quick to get a diagnoses.  How supportive!!

Everyone handles it differently!!  It will take time to get over the hurt feelings from you husbands brother, but perhaps you are all better off.  
Everything has a purpose!!
Perhaps someday he will understand!  But until then your Husband is very lucky to have you!!
I am sure he know that!!
Aura

[sllowe]

AAAAAAAAAAAAaaaaaarrrrrrrrrrrhhhhhhhhhhhhhh

This burns me up!  Or, as "T" would so eloquently say, "THIS REALLY HONKS ME OFF"

- You are a good mother and wife.

- Your children are good to their father.

- Craig moves on with his life despite his limitations.

- Brother-in-law is selfish and self centered.

- It's okay to burn bridges that lead to no where.

- Your family is dealing with this the best they can.

- "Magoo" had a great quote that would fit nicely here (at the end of his last post) and I wish I could pull it up right now without sending this post into cyber limboland.

I'm too p' issy from this right now to share how my family is dealing with the whole thing, but wanted you to know that I am glad you've cut those ties.  You'll all be better for it.  Please feel confident in that you are doing all you can - that is all you can do, and I think you are doing a fine job by your children and your DH.  

Thinking of you both,
-SL

[LLWB]

What a jerk! Load up buckshot in the shotgun, and if he shows up again blast him in the hinney! What a acrock.And how long did he think the kids would keep those kind of secrets from their dad. Sounds more to me like he was subtly hitting on you. When my husband was dying I couldn't ask for better support for him than his kids. They took turns coming on weekends, mowing lawns, hauling hay, cleaning house, etc. Only thing they didn't do was cook! I did get a little tired of being the chef, he had a big clan of kids. But the joy in his eyes was enough for me to keep my thoughts to myself. One of his daughters came out every Wed night, and made me take 2-3 hours by myself. At first I worried while gone, but then realized it did give me just a little perspective so that I could be strong when at home. Even if you just went to a movie or library, or go get a manicure, you do need a little relief from the stress.  Hugs & prayers, to you and Craig both.

Maggie

[Fluffysmom]

I could just about say "ditto" to db's post.  I'm not close to my siblings and my parents have passed away.  My family now are my friends.  I've talked to one sister and one brother about what I've been going through, and they were horrified and sympathetic, but I haven't heard from them since.  Well, my sister called to ask directions to a health food store.  We live in the same city but I haven't seen her in over a year.

My best friend is very caring and supportive, but also very busy and has health issues of her own.  My next best friend is going through cardiac rehab.  I am very grateful for the people on this forum for the support and understanding that they share.

I'm glad that you have loving children to help out and understand what Craig is going through.

Please do take time out now and then for a "care for caregivers" break.  You know, they even have classes and support groups for that.  Of course, you probably don't have time for something like that, but take a few hours or a day now and then for yourself or yourself and your children.

You are one of the first people I met when I joined the forum, and I wish all the best for you and your family.  You and others here made me feel accepted as part of this forum family, for which I am forever grateful.

Hugs,

Kathy

[doublevision1]

Good advice from Mom9335.  Also I think she is absolutely right about how these kinds of responses are about how people generally deal with stress in life.  I believe most of us are typically consistent in coping skills (or lack of), whatever the issue is at hand.  

I disagree with most of your brother-in-law's advice to you, especially with regards to lying to Craig.  Not only does that serve no useful purpose, it potentially puts your children in a position to have to lie as well, and would create a very destructive situation for them.  If you need a day out, just say so.

So I do agree that it is a good idea to sometimes go out and do things on your own, and for your kids to do so too.  I'm not suggesting Craig be excluded from all family outings, but it is healthy for the caregiver(s) to have some time away from the stress of caring for someone with MS.  And it gives the 'patient' some time along, to rest, which personally I appreciate.  When an opportunity arises for my spouse to do something fun, usually involving going out of town for a rock concert, I encourage him to go.  I don't want him to start to resent me for never being able to get away and do the things he enjoys.  This was my attitude before I had MS and is still my attitude now.  We are not and never will be joined at the hip.

In terms of your question re: family reactions, mine have been fine with the few I've told.   I am not in close touch with most of my family and live quite a distance from them.  I've  never felt obligated to maintain relationships with relatives for the sole fact that we are connected by blood.  I place a higher premium on having relationships with people who are kind and decent and loyal, and who don't have a hidden agenda.  In my case, most of these people in my life happen to be my chosen friends, not blood relatives.  So I don't have to deal with destructive family members; I distanced myself from them long ago.  I saw my mother waste too much of her life trying to get approval that never came, from critical and disloyal family members.

My mother has been supportive and keeps wanting to visit; right now I just need time and space to process all that has happened this past year.

My in-laws have been fantastic in terms of calls, emails, letters.  I have not seen them since being diagnosed.  They are wonderful people.

It's just me and my husband here, so we take care of each other and our own needs.  He has shouldered most of the effort since I was diagnosed.  We do have wonderful friends in town that have helped out in numerous ways: dogsitting when we go out of town for medical appts; taking me to local appts; running errands for me; keeping me company; bringing over home baking, gifts, flowers, etc. etc.  This support has not waned as time has passed.  I am very grateful for it.

As things progress and if it turns out I need more help, ie: with house cleaning, yard work, etc. we will hire someone to help.  I realize we are very fortunate to be able to do that if we need to.  Same with things like personal care, although I really don't want to think about that, as so far I am still completely independent in this regard.

db

[mom9335]

Sad and disappointing how ignorant and callous some family members can be, isn't it?  Elaine, some people just don't get it.  It's hard to explain or understand, but either they are in denial, are completely incapable of understanding what a disability does to a family or plain old pompous.  Sometimes, though, they think they are helping, giving their version of good advice, but , again, "don't get it".

I have one daughter who is completely cavalier about her brother's MS.  She says things like "I talked to bro, and he's a 1000 times better"!  She doesn't even get or care that he is putting on a brave front.  The other daughter (and these are all adults) worries and emphathizes continually.  She offers moral and emotional support at all times.

It comes down to personalities and how each person faces illness,misfortune or life in general.  There's nothing we can do to change their perspective, and it's not worth your energy or peace of mind.  You have lots of people who understand, so rely on them and relegate the others to the clueless pile.