What do I tell my in-laws about their son?

[leegardens]

What do I tell my in-laws about their son? My mother in law is 90 and my father in law is 87. We are going up to NY for a weekend for my FIL's birthday and so my husband can see them for the last time. He does not want his parents to know he has ALS since he thinks they will die before he does and he thinks it would kill them to know. Our daughter- she lives here in Atlanta- is going with us with the new baby so my MIL can see the baby.

His diagnosis was confirmed by Emory ALS on 3/18/08. He has bulbar with FTD. They prescribed the bi-pap on 3/18 for eight hours per night and he has only used it for an hour a night. When we went back 5/30 to Emory the respiratory therapist checked his breathing and I found out the results from the 3/18/08 visit. He was breathing at 60% with NIF of 42. On 5/30 his breathing is down to 39% and NIF of 40. J's doctor thinks my husband has maybe 6 months to live. The doctor asked us if we had made a decision about a ventilator yet. J is finally now using the bi-pap every night. This is happening so fast that we haven't had time to get into the system. The ALSA nurse is coming to see us on Monday for a home visit. Before I have time to adjust to one thing something else comes up. I can’t believe how quickly J is declining. It seems from what I read on the forum that the bi-pap generally comes after a few years for most people though I know everyone’s situation is different.

It just seems like all the crap keeps piling up. We went away in May and he really deteriorated during that time. When we got off the plane going on our trip security met us and asked us what happened on the plane. I was asleep so I missed whatever happened. It must have been bad for security to meet us as we deplaned. Then when I stopped to get help with directions for the subway a couple of days later he punched me in the back. I know it is this dreadful disease, I don’t blame him.

My son came home from DC last weekend and with our daughter and we all talked to my husband. We had to tell J that he is deteriorating quickly and to whom does he wants to say goodbye to while there is still time. We didn’t tell him he has FTD though. I also had to take his car away because he just cannot go behind the wheel with dementia. Our son took the car over to our daughter's house. The kids felt it would be easier if J did not see his car in the driveway. I am going to drive him where he wants to go. He is very angry with me for removing his car.

I know my MIL will notice that her son is not doing well. She has two stents and my FIL has a pacemaker and dementia. She is going to ask me what is wrong with J; she is still very sharp mentally. J is hard to understand sometimes and his arms and legs are atrophying quickly. It is very noticeable when he speaks. He is just 59 and I just don't know what to tell her. At least J told his sister. She promised not to tell their parents. Our kids - 31 and 30 - think we should just tell my MIL that J has something else, something not as terrible. I need help; I just don’t know what to do. As bad as this is and how it kills me to see my husband suffer I am really worried about telling the in-laws. Our 38th anniversary is in two weeks. I know how I would feel if I was told that one of my children had this. Parents are not supposed to outlive their children and they will probably outlive my husband.


I am a wreck over this. I am trying to be strong for our family, I don’t have time to waste because I want every minute I can have with my husband. I am on an anti-depressant but I am so sad all the time, I just want to cry. Please anyone, PALS or CALS, what should I do about telling my inlaws?
Lee

 

[gagirl]

Hey Lee

My story sounds so similar to yours. My husband was just diagnosed on 03/28/08 and he has really deteriated quickly, although they believe he has had this 'monster' for 5 years already. His parents are in their late 70's and at first no one in the family wanted them to know. But because he is going down hill so fast, they started asking alot of questions. Finally I convinced my husband that he needed to be the one to tell his family because in the end, they would be mad at me, not my husband for keeping it from them because he is the one who is sick. I also needed him to tell them because I was overwhelmed by carrying the burden alone. I needed their support emotionally. If it were my child, I feel like I would deserve to know. Regardless of their age or your husbands, they are still his parents. God trusted them enough to give him to them to begin with. That is just my 2 cents. In the end, it will need to be something you and your husband agree on. Just make sure he understands completely how you feel.
Good luck, my thoughts and prayers are with you.
Windy

 

[Icanmanz]

Wow, Lee! God bless you and your family. I am keeping your family in my prayers. I see you are a new member. You have a plateful, friend, God bless you! I know what you mean by parents are not supposed to outlive their children. I know how painful it can be, it happened to me. I lost my 38 yr old son to this disease a year ago yesterday. The pain is still there. My son is on my mind all the time. Prayers have done a lot for me. He is the answer. I'd say respect your husband's wishes, but I am afraid that his Mom is going to freak out when she sees him, because she is going to know something is wrong with her son. She probably will not give up asking you guys what is wrong! God bless you folks, it sounds like the illness is acting rapidly. My son's illness acted rapidly at the end. He went down fast. Lee, please keep us posted.

Irma

 

[MtPockets]

If it were one of my sons that had this going on in his life, I would want to be told the truth. My own opinion, is they need to be prepared for what may happen. The best way for me to handle this would be face to face, in person, so all the details can be discussed. Consider if you do not tell them and he were to pass on within a few months. How will you handle it then? I'm so sorry you have this happening in your life.

You have a difficult choice to make. May God bless and guide you as you and your husband face this decision and the coming results of this disease.

 

[Icanmanz]

Your post makes a lot of sense, Al. It is painful when you are given the bad news right off the bat, and it is very, very painful when you are being left with a lot of unanswered questions. It is such a hard decision to make. God, I pray to God these people make the right decision.

Irma

 

[Al]

My dad is 93. When we told him he didn't know much about it so we gave him some information. His thinking is that new medical break throughs happen every day so maybe I'll get one. My in-laws are 91 & 89. They know and would be very upset if they hadn't have been told right away. Both sets of parents are still living on their own as well.
AL

 

[Icanmanz]

Wow, Al! That's a lot of years! God bless them!

Irma

 

[beaner1]

Lee - my heart goes out to you! My thoughts are that you should tell them - secrets are hard to maintain, and you're right - you need all the support you can get. By keeping his diagnosis a secret, you and your family are being isolated, and that's a terrible position to be in - I've been there and I know how bad that can be. You have to do what you think is best - what does your heart/gut say? Follow it - that's my advice. Yes, it is the worst thing that can happen - when a parent loses a child, but as a Mom I would want to know so that we could spend as much time together as we could, and to make peace with what will be. Good luck with whatever you decide - I'm on your side no matter what!
Beaner

 

[brooksea]

Hey Lee!

So very sorry you are having to deal with such problems!

Capt. Al makes a good point about how will you handle it if and when your husband passes. If your MIL is as sharp as you say she is, she may be resentful and put all the blame on you. Is that a burden you will be willing to take on after you've traveled down this rocky road? I see Windy eluded to that.

Your struggle is of epic proportions! I wish there was an easy answer for you.

In my instance, I told the oldest SIL about my husband. She was to tell the rest of his family. She called her dad first and was told NOT to tell anyone else... that there was a person in his church that lived 18 years with the disease and it was no big deal! I didn't know that he had put out this "edict" and called my other SIL at work to get her to babysit while we talked with our minister about his condition. She started crying and I felt terrible. Yeah - ALS may be no big deal to those that don't live with it everyday of their lives!

I tell you that to point out that keeping a loved ones serious ailment from family can be hurtful to all involved. But, you are the one that knows what is best in your situation.

I wish you and your family good luck!

PS-

Spoke with the doc about the lady living 18 years with ALS - he said it wasn't ALS unless she had mechanical life saving intervention (VENT, etc)!

 

[hopingforthebest]

Dear Lee

I am concerned about you! You are sole caregiver to J and need to stay well.

If it were me, I would not even consider taking the trip to the in-laws as emotions and stress will be increased and with J's progression being so quick I would want to spend my time with him and your adult children can maybe go and talk to the grandparents or
have J's sister talk to her parents. His parents would want the best for him also.

Will be praying for you, J and the children!

Patty

 

[leegardens]

Thanks for all the input. It really gave me a lot to think about. I forwarded the link to both my kids and we are all talking about this situation. The three of us are starting to talk to Jay about telling his parents about his condition. Jay called his mom tonight and she asked him why his voice sounded odd and he told her he has a cold. We have two weeks until we see his parents, maybe we can talk him into telling them by then.

Today I went and met an estate planning attorney. I cannot believe I have to do this. I always thought we'd have more time. The lawyer gave me homework; paperwork and information I have to gather for our next meeting. I know this is critical to protect what we have worked for. When my father died my mom had to get probate to approve all her checks, even though it was her money too. She cried when she had to ask for the money to pay the funeral bill. I know I need to have my own bank account, not just a joint one. It just feels so cold-blooded to be making plans for afterwards and still be making plans for caring for my PALS too.

The weirdest thing is that I don't feel guilty about doing what has to be done. My husband and I were business partners for 24 years and we had a lot of rough years together where our business could have failed. Thank g-d we made it through. We would argue when there were problems during the first twenty years. When we had a problem, I always wanted to just deal with the problem and come up with a remedy. I would want to save the drama for afterwards. He would always want to figure out who was to blame and then rant and rave for awhile and then go fix the problem. I would end up being really upset and then I still had to handle the fallout. I hated that. Now I feel like I still have no control because of ALS; I can’t control the impact it is making on our family. It saddens me to see the effect this is having on our children. I read about this issue in many of the CALS letters. I hope I can learn to accept that.

Lee

 

[CindyM]

I can’t control the impact it is making on our family. It saddens me to see the effect this is having on our children. I read about this issue in many of the CALS letters. I hope I can learn to accept that.

It is tough to deal with, Lee. I'm betting that your family is strong and will cope with just about anything life throws at you. It is a shame you have to be tested in this manner, though. We will be with you on the challenges ahead. Cindy

 

[leegardens]

Update

Thank you all for your help with the informing my inlaws' quest. We went to New York for my FIL's 87th birthday. My MIL obviously could tell something is wrong with her son. She has been calling every week since we went to NY to ask Jay if he's seeing a doctor or if he can go to NY to see a specialist. My husband is now convinced that I can speak to his mother about ALS. He gets so stressed talking to his mother because all their conversations are about what he is doing with his health. I spoke to his sister and tomorrow I will be telling my MIL that her son has ALS. His sister is going over to her parents' house during the day and will call me when she goes. That way she will be there when I tell her mother and she can be supportive and help with her mother's pain on hearing the news. I won't give my MIL all the details about Jay but I'll tell her what he has. My kids and I have felt all along that it is her right to know what her son has. Now my husband agrees with us. I hope the rest of their conversations will be about their life as a family instead of questions and stress. Thanks to you all for your support.
Lee

 

[brooksea]

Good luck Lee with the conversation you will have with you MIL. I will be thinking of you.

Sounds like you have thought this out well and have taken the best course of action for all involved.

Hang in there Lee!

 

[Icanmanz]

Good luck, Lee, and I will be praying for your entire family.

Irma