Failing marriage

[otksmama]

My spouse and I are not well. And it really centers around our child's PANS. While his most current episode was the big one, I know his first was in toddlerhood. I knew something was not right then...that it wasn't just a common childhood sickness. My spouse did not agree. And with others chiming in that our son was just fine, I quickly became the nut who was just seeing things or worse, looking for something to be wrong. Even though my spouse agrees now something's a little off, we still cannot get on the same page. All of this after the debilitation, after years of come and go tics and other behaviors that didn't make sense. He simply says things aren't as bad as I think. While I'm making huge efforts at healing my son and coping myself, our diverging viewpoints on this are just devastating. We have been able to pinpoint the original flare as the start of our disconnect. But we are not finding ways to reconnect...esp since he STILL doesn't believe there are significant issues, much less that this is even PANS. Anyone else experience this? Any words of encouragement or advice?

[Guest]

Yea my parent's divorced recently and some of it had to do with me being sick. My dad didn't want to accept that and just brainwashed himself into thinking I was just fine and just lazy and didn't want to work - I could scream. My mom has always had my back - yay for moms!!! But in the end, there was more to it, I think me being sick was just a little piece of it, there was much more to it........

 

I think had they done therapy it would have REALLY helped and my mom was all for it but my father refused to do therapy, "I don't believe in that psych crap." Again, shame on my dad.

 

I see a really good psychologist and he's helped a lot of people, sitting down and getting all of the issues out there, even ones you didn't know existed, is a good thing; then working through them. My mom's only regret is that they didn't do therapy.

 

But I'm not married, I'm just the child and I've never been through it, this is just me seeing things from the outside. I hope it isn't an offensive suggestion, I just think my parent's could have worked things out had they sat down with a professional, or at least maybe not had a very bitter split (maybe they'd get along now).

 

So sorry. I can say that I blamed myself and still do. Please talk with your child and don't let them take on the guilt. I took on most of the guilt b/c my dad put the blame on me!!! (jacka**). Later on I learned that most of this was HIS fault (secrets, loads of drinking) - it was just too easy to blame me. Just don't let your child feel like I did.

[trintiybella]

Ohmygosh yes! I don't even bring my husband to doctors appointments any more. He's a real nice guy and I think tries to "get" it but its useless at this point. It's super tough on the marriage!!! Perhaps one of your doctors could help explain it to h a little. I also think my husband feels left out so I tend to send him out for the supplements and let him know I couldn't do it without him! You can PM me anytime if u need to vent!

[tu4four]

Big hugs to you. This is so hard on marriages. It's hard period. My husband and I have been in that horrible place where we just can't agree---where I know my kid (s) is sick, and he knew it on some level but hadn't read everything that I had read and wasn't convinced. Who wants to believe it? And it often LOOKS like a behavior issue for us--we often talk about how that belief is a luxury that we can lo longer afford.

For us, in addition to the above, I think a lot of what was going on was the crushing weight of providing for our family with unending medical bills. I am a stay at home mom, and financially the responsibility has all been on my husband.

 

I think a lot of what made things better, ironically, was when things got to be the worst for my daughter. Once it was undeniable and our families started acknowledging that it wasn't just behavior, we started to hang onto each other more. I also had to learn that I couldn't argue or shame him out of withdrawal. Yuck. I had to just so what I had to do, accept where he was and go on. Not sure I ever perfected that, but I mad some big improvements.

 

Good luck and big blessings to you.

[JAG10]

We went through years of psych meds before pandas dx in early 2010. My dd13 is soooo much better now after the pandas treatment. My dh never saw things the way I did and that was hard because it was not fulfilling to discuss it with him. That void was filled by friendships like made here.

 

Here is the bottom line...he never got in my way of obtaining treatment for her. He wasn't doing research or anything like that but he didn't get in my way. And when I asked for $15k for IVIG in Chicago in 2010, he sat in on the phone consult and said ok. Did he want more of a guarantee? Of course! Don't we all? We've spent a ton of money and that has probably been the hardest for him to swallow, but he knows me and my mama bear side well enough to know nothing was going to get in my way. And I'm ok with that and we respect each other. He doesn't have to be as committed or convinced, but stand down when push comes to shove.

[pr40]

here is a theory based on my wife's behavior. She went through a denial for a year, then when she could not deny it anylonger she switched to saying "it is not that bad." But, in our case, I think that there is something wrong with my wife, too. She has high IGG lyme markers and some of the same behavioral issues as our children. She wasn't like that the first 15 years of our marriage.

 

If I have an advice to give, it is this: you got to approach your spouse the way you do your chidlren. I don't mean as you would an infant, but as you woudl a person who needs some kind of help. Your spouse may need help in realizing what is going on or he might need more help than that. Or he may not want to be helped. I was lucky that in some way my wife realized that something was wrong with her and tried very hard to figure it out.

Edited November 2, 2013 by pr40

[otksmama]

You are right, pr40. There is something going on with him. He does need help, but does not want it.

[junkyardjean]

We have started working on conscious, active verbal reminders on why we fell in love in the first place. We are drowning in life right now, and the fights get pretty bad when dad's behaviour goes south (there is only so much gas in the tank). When we take 10 secs (and yes, sometimes it is in the bathroom) to verbally say - I remember when your eyes sparkled when... It helps to remember "us" in this gigantic mess.

 

I know it won't work forever, but it's helping us survive right now

[nicklemama]

The divorce rate goes way up on families who have children who have serious/chronic illness. My husband is very supportive and does his best but he doesn't understand it like I do. We don't get out as a couple very often and it has taken a toll, no doubt. We've been married 31 years and our son is nearly 10. He's an only. I find myself wondering where we'll be when our son can finally leave home and be on his own. It will be about the time I will need help and extra care from the toll of all this!

[rowingmom]

DH and I ended up in marriage counseling.

 

DH was trying to control and side-track my efforts to help our daughter. Being a PhD biologist he felt that our well educated, highly regarded PCP was more knowledgeable about our daughter's problems than I was, and I can understand why he felt this way.

 

But I couldn't accept the ritalin/clonipin/good spanking prescriptions, and certainly didn't understand how they would help in the long run. I knew there was some biological reason for DD's behaviour/symptoms, especially the more physical ones - IBS, deep bone pain, headache, dizziness, tingling extremities, anxiety attacks and palpitations etc. No doctor was going to tell me that these had a psychological basis.

 

When the ped psych suggested PANDAS, it gave me a leg to stand on, but still no treatment options in Canada. Unfortunately she knew little about the disorder and in the end could only rx ritalin and clonipin (at least she didn't add spanking) as well.

 

There were huge fights over my researching lyme/coinfections (it can't be lyme - it's January!) and the fact that I intended to go out-of-country to get help. It was really and truely horrible. Even more horrible than PANS. I found us a councilor.

 

The councilor helped us to see that neither has the right to control the other. DH was pretty taken aback at this revelation, but since then has left me alone. He wouldn't involve himself in appointments or anything to do with our LLMD. I tried discussing things with him several times, but learned quickly that this lead nowhere. At least he didn't refuse me the funds to do what I thought was right.

 

Life wasn't fun for a long time, and we no longer share the intimate portions of our lives. I have told DH that at any time he is welcome to leave if he feels he needs to, but that I will not be leaving our children. Our marriage is essentially over, but we are still partners in raising our children.

 

The hardest thing for me was to realize was that I no longer have a life partner, someone that I can count on to take my back. That whatever happens will only happen because of the effort and time I put into it. That I can trust no one else to help; not doctors, not parents, not friends, not family.

 

But in this game DD's life is ultimately more important than any of this. More important than my needing to be validated by anyone.

 

We each do our own thing. I cycle and row/weight train. DH is involved with DS's sports and I do not begrudge him any time he wants for hunting, fishing, sports etc. We take the kids to their activities and support them wholeheartedly as a family. We no longer argue or discuss matters that could lead to argument. I deal with everything pertaining to DD myself, and I make decisions about myself for myself.

 

DH and I have come to an acceptance of this new way of life, but whether or not it will last after the children leave home I don't know.

 

Only now, 3 years later, is DH starting to acknowledge the obvious improvements in DD's health and behaviour. He is even on board with DD's continuing treatment with alternative herbal protocols, something that he previously would have dismissed out of hand.

Edited November 4, 2013 by rowingmom

[T_Anna]

This is a hard topic. Even the best marriages struggle under this weight and at times we become co-caretakers rather then husband and wife. I remember going to a psychiatrist for DS who said DH and I should make sure to go out once a week as a couple. I almost burst out laughing. It's hard enough to find anyone who wants to be here all night every week, but at this point we cannot afford to do much.

 

We try to sneak away a few hours on errands when we can and hope that we can hold our breath until things are better.

 

T.Anna

[SSS]

I think DH and I are too afraid to be left alone with all these kids, so we treat each other well.

J/K. (sort of)

Yes, this journey has been painful. Unforeseen, and frankly brutal at times. On my knees.

This is my 2nd marriage (almost 10 years) and I chose a kind man.

With every possible negative, there can be a positive.

Yes, he let me spend the money.

Now, kind of wish he didn't so much.

See?

We've learned together- when one of us 'loses' it, don't shame or judge, because it will probably be your turn next week.

I tend to verbalize out- he takes it all inside.

He had a trip to ER last Spring w/ heart attack symptoms- heart disease in his family. Stayed overnight. Scared us something good.

We learned: It's not worth it. We HAVE to not let this stress take us down. Let go of controlling everything and outcomes.

We are doing the best we can, and have done the best we could with what we had at the time.

We love the kids dearly- but cannot 'fix' or predict everything.

We have other children in the house, and their well being factor into our decision making.

I learned: don't dump my worries and fears on the guy so much- he takes it inside.

And, call me old fashioned, maybe another name,

sex is important.

Not saying all the time, but important to connect, seems very important to the men.

We have favorite TV shows, rent a movie, after kids in bed. Our shows, our time.

This doesn't mean I don't get depressed sometimes, or have feelings of grief come up around my dd and how much of a struggle it can be for me and her.

[airial95]

Marriage counselling is what saved our marriage. Its still not perfect, but we now have a renewed commitment to each other as well as our sick kids.

 

My husband "got it" right away, but in my view he didn't seem to care to much. I was the one doing the research, dealing with doctors, teachers, etc. It was almost like he didn't even want to know what was going on. After over a year of the anger and resentment building (and nothing resembling our marriage left) I was ready to leave.

 

We got into counselling, and it was a huge revelation for both of us. We learned how our different ways of dealing with the stress of pandas affected each other. For example - I have always felt knowledge is power - so once I had a name for what was wrong with my kids - I set out to learn everything I could and educate everyone dealing with our kids. My husband on the other hand, felt he had little control over the medical side and it overwhelmed him - so he tried toaintain control in his way - financially. He set to rearranging our finances, investments, etc so he could pay for whatever doctors, medicine, treatments etc I said were needed without bankrupting us. It was his way of maintaining control.

 

That he did this without a word to me was part of the problem. What I saw as him being aloof and uncaring was really just him dividing and conquering (I handle medical/school - he deals financial).

 

It took a third party for us to realize this, as well as for him to be able to express his feelings in a way that I could relate to and vice versa.

 

We have had to do some very hard things to make it work - like recommit to each other. We do a date night 2 x a month. Is it hard with 2 pandas kids - you bet. But our marriage is just as important as they are. We also commit to 1 girls/boys night out a month too. A time for each of us to decompress on our own or with friends. Its important.

 

Another point of view was shared from a guy friend whose son has Aspbergers. When his son presented with problems as a toddler, his wife struggled but he wouldn't hear of getting him screened. Later, he acknowledged that he knew all along something was wrong - but at that time he just wasn't ready to face the fact there was something wrong with his first born son. He was in such a state of denial. He said he wasn't equipt emotionally to deal with it. And I think that may hold true for lots of men.

[Aggie103c]

As you can see from all of these replies, PANS puts a huge stress on the family as does many other illnesses. I was already divorced when my ds15 was diagnosed last year. His father added a lot of stress to an already stressful situation. He didn't believe in it and thought it was all behavioral. He was constantly on my case to get him to school and out of the house and be stricter with him. My ds never had behavior issues before. The problem is that PANS is not well known and my ex and I both had a lot of pressure from well meaning docs, family members, friends that it was a behavioral issue. The difference is that I knew something wasn't right and listened to my intuition and researched what it could possibly be. Ds' dad did not. Ds was diagnosed with PANDAS last December and after many different treatments, including IVIG, he did not get better. Last week he was also diagnosed with Bartonella and possibly Lyme by an LLMD. Ds' Dad called me last night and said he feels guilty that he did not do more research on his illness and apologized to me too. He finally gets it and it took only one year! So I am telling you to follow your heart, intuition, inner voice - whatever you want to call it. Your husband will hopefully catch up at some point. He is dealing with it differently than you are, but at least you have support from this forum.

Good luck to you and your family!

Aggie