Pretense versus reality?

[poppies]

Hi everyone. I am wondering if anyone could share their experiences about relationships with parents/in-laws. My husband is intent on trying to "protect" his parents from knowing about the full extent of the difficulties he experiences with his condition. He sends them flowery emails that make them very happy and when they visit us he wants me to pretend that everything is great. He can't talk, except for a word here or there, so I have to keep the conversation going the whole time. Even when they make insensitive comments he expects me to smile and pretend everything is okay. His reasoning is that they are 69 and 74 so should not be burdened with his troubles. The thing is it means I have no support. I have to do all the worrying and planning for the future on my own. I am in such a state of confusion. I am finding it incredibly difficult to keep up pretenses around them. In fact I had words with them this week because they were smiling and laughing and telling my husband how rich he would be when he inherits their paintings. Am I alone in thinking that is an insensitive topic when you are speaking to someone with a terminal illness? I feel like I am going crazy. I feel so alone. Do I keep up the pretense or do I bring them into our reality? Is it my choice or would that be dishonoring my husband? Help?

 

[affected]

That's a really tough one poppies!
I'm clutching at straws here, but do you think it is a way of him holding some denial? You know like, if only him and you know what is really going on, then it isn't really going on?

So many people think my PALS is this hero with an amazing attitude because he will post cliche stuff on fb. He used to say to me - if people (family) ask how I am doing, you tell them I'm fighting this with everything I've got! Don't you tell them negative stuff.

I did feel it was his own denial that he was trying to feed.

Well that left me feeling like I would either tell it like it is and have him angry with me or tell the reality. I kind of went half way in compromise in the first 6 months or so. But he has been rapid progression and I don't do that now.


And yet, family can seem to offer the most help and deliver the least. I have had one tell me that she won't even come visit him if I don't stop my constant negative attitude! HA (those ones are best not coming in my opinion as they just take more of my energy when they are here)

So that didn't really answer your question, I'm not sure of the right answer, but I do know how you feel!

 

[Barbie]

Poppies -- you have a predicament. I can so see your side and his as well. but they must be blind and in major denial if they visit and don't think it is strange that he can't talk. they MUST know what ALS is at their age...

My husband originally had me hide his illness from everyone. I couldn't even tell my best friend that he had been rushed to the hospital (we thought he was having a stroke but it was just the damn ALS...long story). His elderly aunt was going along with my story for several months but one day, she said to me "is this ALS?" and I started sobbing. she had known the whole time but was trying to support him and pretend to believe his story. Maybe they are just trying to comfort him by going along with the pretense.

how long has this been going on? if it is not hurting anything except your mental health, let it continue for a while. there will come a point when he can not pretend anymore and neither will they. keep talking to him about the importance of being truthful with this--they are his parents and will want the burden because his job is not to protect them. They are really not that old to tell you the truth. you could also start dropping hints and making comments...he is probably in denial and the comments (made in front of him) may help him accept the truth and share with them. Telling people in the beginning is the hardest part of the disease I think because it makes it so real!

Your other option is just go behind his back and send them an email with what is really going on and perhaps a link to medical info on ALS. You do need support--but you may not ever get it from them so do not count on it.

Good luck and tell us how it goes

 

[FSHolbrook]

I can understand what you are saying my mother was the same way. I on the other hand have elected to let everyone know about my ALS except my Dad who is 98 and will likely die before me. He is also lived on the West Coast while I live in the upper Great Plains. You really can not keep ALS a secret for too long because at some point would will be using a walker or wheelchair. One thing that I learned from my bout with cancer is that the folks in the cancer center stressed sharing. Good luck

Rick

 

[AfraidButNotAlone]

I told my parents (ages 75 & 76). I figured they needed to know.

 

[Santa joe]

How very sweet of your husband wanting to protect his parents. However, I am the Mother of 2 grown sons and I would want to know. I don't know what kind of relationship you have with them but this could end up being thrown in your face and putting the blame on you. Hopefully they will be there with you on this horrible journey. The more emotional support you can get the better off you will be. Of course everyone on this forum will help you as much as we can.We are all going through ALS together and this site has been a tremendous assert to me.

As mentioned above - ALS is something you can not hide.

Debbie

 

[bigmark1954]

Interesting predicament you have there poppies....I can relate to both you and your hubby.
I am newly diagnosed, and told my wife not to tell anybody that My life does affect directly. Perhaps it is kind of a privacy issue for him?
I also know what denial is all about....I am still working out and jogging on my treadmill...I have to hang on to keep from falling, but I still do it. I think it is wearing me down, but my denial manifests in trying to stay strong and defeat this MONSTER.
My wife is a master communicator, and is frustrated that she can't share my condition with all of her facebook friends. This woman can talk on the phone for hours, and does each day, she talks enough for both of us.
I would rather keep private about my als, and have only shared it with a handful of people.

 

[DreamsEnd]

Poppies, as others have said, you are in a difficult position between respecting your husbands wishes with HIS parents and your need to be open. Some families, I've noticed are very private and don't share with each other. When my brother had terminal cancer and was in a wheelchair he didn't want to go out during the day because he didn't want other people pitying him. He had enormous dignity and pride.

I notice you said protect them from the full extent of his difficulties, not from knowing he has ALS? More importantly, I'm hearing your cry for support. Since I am so new to this I can't point you in any direction, but I'm hearing (reading) your need for a support group and I hope you find it soon as an outlet for your emotions.

Hoping you've solved this by the time I've jumped on here and posted.

Sherry

 

[pearshoot]

so why does the majority of Americans know absolutely nothing about ALS...keeping private and unwilling to share is main reason....when I ask someone do they know what ALS is I get the look of a deer caught in the headlights...I will explain what it is, how it affects...and show where I am at in this journey...nothing to be ashamed of, its not your fault....if you desire to participate in WALK TO DEFEAT ALS, the ALS Associations major fundraiser you need friends and supporters. Majority of the money remains in your local support group to provide services and loan equipment you will need...so my plea is reconsider being private as we need all the help we can get to fight this monster...one more point, statistics show being socially active will extend life expectancy.... .

 

[adozi]

It really is easier to tell people. But i understand both sides. I wanted to keep the extent of our difficulties from people at first. Actually, at first, i wanted to crawl into a hole and not talk to anyone. My theory is that your inlaws, like Barbie's husband's aunt, are going along with his script. But if you let them know, they might be able to offer some relief. You have come to the right place for support, anyway.

 

[FSHolbrook]

Right on, I am appalled by what the general public knows about ALS and I would include myself prior to Sept 5. It is my goal to talk about ALS every chance I get. I am planning at being at the MDA muscle walk with a sign that says something like Ask Me About ALS. I hope I get a bunch of question.

Rick

 

[affected]

From the perspective of a CALS, I found this really difficult in the earlier months as my husband also didn't want some people told, or wanted me to play it all down.

I understand the PALS perspective as they deal with their own grief and range of emotions in trying to come to terms with the reality.

BUT as a carer, PALS can lose track of the enormous support network we need. I never try to compare - meaning it's not worse or easier or anything for PALS or CALS, it is DIFFERENT. The CALS also has a huge weight to carry, and many things to manage and trying to downplay or hide it from family becomes an extra burden.

I also agree, using opportunities to raise awareness is important, but when we are talking on this thread it is about 'protecting' close family members, which also then means less support for the carer. It also means those family members are robbed of the opportunity to move through their own grieving and into a role of some support. If they then choose not to be a support, well that is their decision. But they should be given the opportunity. If he wants to 'protect' them - how would it be for them if he simply stops breathing tonight and they had no preparation because they didn't know how seriously ill he is? Then the CALS is left with further burden of suddenly having to explain to family that they weren't told and were excluded from supporting and from having real quality time with their loved one.

We all know anything can happen and any one of us, irrespective of ALS, but that would be genuinely unexpected.

Just my thoughts, I hope you can work out the right decision for yourself, there aren't really right or wrongs, we all bumble along through this as best we can.

 

[poppies]

Thank you so much everyone for your replies. You have no idea (okay, perhaps you do X) how much it means to me to hear that someone understands. You have all made good points and given me a clearer perspective. I am about to open an email from my mother-in-law. Having your support makes me feel stronger and more in control. Thank you, thank you, thank you!

 

[SMP51]

Poppy, I think it is his coping skill. I have found I have my set for my part of this battle, and he has his and his battle is different than mine. the trick is coming to peace with the differences or finding the middle ground.
His parents are not idiots, if they know he has ALS they know what is coming. I am sure they are heart broken but they are using the coping skill set they have ...... if you need some emotion support let them know.

 

[AfraidButNotAlone]

My mom said she was glad I told her.