Scared, Sad and Overwhelmed

[Iscah1]

Hello:
I have been lurking around for the last few months hoping my husband didn’t have ALS, but he was officially diagnosed on Tuesday. I feel so overwhelmed and sad. We plan to tell the kids this weekend, and I feel like I’m watching the last days of their childhood innocence slip away which is especially disturbing at Christmas. We have a 16, 15 and 12 year old and I’m so afraid how the will react and how it will affect their emotional state today and in the final days. There are so many sad videos on the internet that there is no way to shield them or offer anything positive out if this. I keep daydreaming that we will either progress super slowly so that the last days will occur when they are adults or that when we go to the clinic they says this diagnosis is wrong, but I know that’s not going to happen. I feel like there is no more happiness which isn’t helpful for my husband or my kids. As the parent and caregiver, I have to be strong but Im not. Where does one find the strength to deal with this?

 

[ShiftKicker]

Hello and so sorry you find yourself here. I'm not sure if you have read the Resources section yet. It's got some very helpful information and may provide some focus for you. Please feel free to ask any questions you may have.

Aside from the truly supportive community of CALS here who know exactly what you are experiencing, I do recommend you find someone like a counselor you can speak with to help you with your very natural feelings of despair. While you are planning to support your spouse and children, you are absolutely deserving of support yourself.

~F

 

[Mary2]

Iscah1, I am so sorry that your husband has this diagnosis. My husband was diagnosed in 2021 but had symptoms for years prior to the diagnosis. This is a wonderful forum, filled with information and emotional support. The strength does come to handle this. The key is to try and get enough sleep and stay well rested. I will be thinking about you and your family this Christmas.

 

[Nikki J]

I am very very sorry. Hoping of course that the diagnosis will be overturned at your second opinion.

the first few days and weeks you are in shock. You will get through it and there is life after diagnosis.

there is no shame in counseling for any or all of you. My niece was younger -9 -when her mother was diagnosed. They spoke with a counselor about how to tell her and my niece saw a counselor the entire time and after as well. When you do tell your children make sure the adults they work with know. I mean teachers, guidance counselors coaches etc. you may want to wait until the second opinion though if he is fairly symptomatic they have probably all been googling

 

[lgelb]

Very sorry, Sugar Land. We'll support you however we can. Don't discount your own strength -- it will be there when you need it. Meanwhile, daydreams are hope and as long as you keep moving forward with what needs to be done, there is no harm.

Just to make sure, you did get or are obtaining a second opinion if the first was not at a major center (Baylor or Methodist)?

Give yourselves time to process and I think you will find there is still much life to live as a couple and family, and joys to be had. There are more treatments than ever to slow progression, and you're in a city with access to clinical trials as they become available.

Telling the kids is always hard, but they would rather know the truth than be in doubt. You can certainly warn them about swiping past the sad videos. They will be guided by your conversation, so I would center yourself before the weekend.

For perspective, our son had to deal with his dad's Marfan syndrome [in Houston, actually] from when he was a toddler. He couldn't do sports with him, my husband's vision was too poor to drive, he started warfarin in his 30s after his first valve replacement, his lungs were too weak to climb stairs, etc. So our lifestyle was very different than that of our son's friends.

Then came ALS, with my son on the opposite coast by then. We moved to his coast, and he quit his job/left his city to move in with us and help out.

The point is, everyone starts from a certain baseline expectation in the morning, but almost everyone is able to adjust it to real life. We all spend some time thinking, I can't/why do I have to/why us, but we also push on, because we owe ourselves and each other more than standing still affords. And what we continue to share with/do for each other from the point of diagnosis, provides us peace and and comfort long after our PALS is gone.

Best,
Laurie

 

[Tomswife]

Iscah1. So sorry you have this diagnosis. When we first learned of this in August I doubted my ability to support my husband, emotionally, intellectually, physically. And yet. I have found I am much stronger in all ways than I thought. I think you will find that is also true for you. We dont live all aspects of ALS in a day. Each day we prepare and respond to what that day brings. I hope your family finds all of the strength, compassion, comfort and practical help you all need as you need it.

 

[affected]

I'm so very sorry you received this diagnosis.
That first month, maybe 2 is the most horrible time of shock and feeling overwhelmed.
You have had lots of encouragement already so I will just say - we are here, and we will be with you.

 

[MJT]

I am very sorry that your husband was diagnosed.

Shut out the world and take all the time you need to process the diagnosis with your family. It may take a while. Ignore the 8000 texts and phone calls you are about to receive. Instead, designate one person as your mouthpiece or start a CaringBridge site. Eat healthily, and take a short daily walk. I can promise that you will be shocked by your strength and that of your children. Your children will feel empowered and proud to help you and care for their father, and you will model the meaning of love for them.

There will be time to plan. We will be here.

 

[Jimi]

You can be stronger than you know. My daughter is 14. She understood my dx when she was 7. She had to deal with her parents divorce a year before the dx. She used to help me with grocery shopping and laundry after I picked her up at school. She was more resilient than I ever imagined. She has learned a lot about compassion. Fast forward to today. She is in 9th grade. Plays violin in the school band, plays piano, competes in ice skating and is in advanced math and language arts. Of course my ex gets a lot of credit for all of this too. My point is that you will be surprised by what the future holds. it's not all doom and gloom. Your husband can have a positive impact on the kids for many years to come if he chooses and you can have many years of good times

 

[Smjacobsdmd]

I also am sorry you have to experience this. My wife and I are still adjusting to my recent diagnosis as well but I have “met” a number of wonderful people on this forum with a number of slow progressions to give us hope and inspiration. While I am not happy for myself, I am often overwhelmed with sadness for the younger families who have to experience this. At 69, I have lived my life an can accept my approaching death without fear of the destination but I am apprehensive of the road getting there. Take time to breathe and accept any help you can get.

 

[KimT]

I'm so sorry your husband got that diagnosis. One thing is for sure and that is there is life and good times after the day of diagnosis. You both need time to process it and allow your kids to process it. I hope you can get family counseling because it really helps.

I lived alone and worked when I was diagnosed. I felt overwhelmed and probably made some questionable decisions since I didn't know how much time I had. Try not to burden yourself and your husband by reading too much online. Give yourself time to talk with each other and make plans for the future. Nothing needs to be decided immediately. Focus on your family and go from there.

There are many resources and sometimes, even that, is too much to take in.

You will meet some wonderful caregivers on this forum. Facebook also has groups you or your husband might join.

Let your friends and relatives help. Always remember to take care of your own health and give yourself permission to get a massage or whatever makes you feel good. Keep your friendships and urge your husband to keep his.

If you want some real inspiration, just look at some of the adventures other PALS have had and are still having on this forum.

Also, feel free to vent, ask questions, and make comments. Support is so important with this disease.

 

[affected]

Please be gentle, and I want to acknowledge that just now you feelings of how will you and the kids cope is completely valid. Just take a day at a time, even just an hour at a time.
Today you don't need to do anything but get through the day.

 

[Jensen73]

<religious content removed; please post in Religion forum> There will be sadness, anger, grief before death and so on, but try to make the activities, that you can both still can do, super special. Live every moment like it’s your last and you’ll notice that many stresses will vanish. Also, you are not alone. There are many women in your situation. Reach out.

 

[Iscah1]

Thank you everyone for the kind words. Over the past week I started feeling better but it’s been up and down. We took the advice from here and decided to tell the kids after we go to clinic in February. The clinic we are going to is at Methodist Hospital in Houston. Has anyone been there or know anything about it?

 

[Nikki J]

Houston Methodist is where a number of members have gone for second opinions and for care. They are an excellent place to be from all I have heard. You are going for a clinic visit but their multi day second opinion program?