My husband cried today

[beachgirl]

For the first time since his diagnosis in June, my husband broke down. He has rapidly lost his ability to speak, and he was trying to tell me something that I just couldn't grasp. He tried to write it down but could only write one word that made no sense to me at all. He can't put his thoughts into words which makes communication so difficult, unable to use an ipad. Today he started crying which broke my heart. What seemed to trigger it was a text from his brother whom he misses dearly but can't talk with on the phone. I am the go between for them, and I know he wishes he could see him and talk and laugh like they used to. This has been such a rough week. I am so frustrated with his clinic which is another story altogether. A peg placement has been delayed due to an elevated white blood cell count. And then to see him in tears today, heartbreaking. How I wish I could do something to make it better for him. I know I'm rambling, but just needed to vent. Thanks and hugs.

 

[affected]

Welcome beachgirl, I'm so sorry for your husbands diagnosis and for these challenges. bulbar onset is the cruellest way this monster can attack indeed, losing speech has so many impacts.

Does he also have some language FTD as well as it seems like it's not only the physical ability to speak but the ability to use language as well?

You can vent here and we will welcome you into the family for all the support we can give xxx

 

[LSARIOL]

Beachgirl,

Going through the same thing with my sister. She is no longer able to speak. We do have an Accent 1400 for text to speech which we were able to obtain from the Gleason Foundation. It mounts to her electric wheelchair. When we cannot use the device due to location, we are using a laser pointer attached to sun glass frames with the lenses removed and communication boards. They are a life saver when getting her into bed. We also use a white board to add frequent phrases. We had a speech therapist come in to help us with the best way to use them. If this is something you are interested in hearing more about please let me know. I would be happy to share what I know first hand!

Sorry for what you are going through, I wish I did not understand so well!

 

[Narrowminded]

Beachgirl - welcome. I'm sorry it has to be here, but this place is heaven on earth for us CALS. As far as your DH brother, one thing you could do is open up facetime or Skype. We did that with Brian and his dad when his dad was in the hospital before he died. While Brian could not talk back to them, just seeing each other was huge and my FIL could talk to him. Brian can still smile, so he would smile in agreement. You might want to give that a try, then you are not relaying message. Brian also has a buddy that will call. I'll put my phone on speaker and leave the room for a bit. His buddy will tell him stories or what is going on in his life. His friend knows he can't answer, but they still feel connected that way.

Hugs,

Sue

 

[bigmark1954]

This really hits home with me. It really is devastating to lose ones ability to speak legibly. It makes us sad and is very frustrating.

I lost my speech about 6 months after my diagnosis and I consider it my cruelest loss. I find myself avoiding people because of it, and dread going out in public.

People for the most part are rude and impatient with things like speech an it adds to the anxiety.

As far as crying goes, Neudexta and/or antidepressants could be beneficial to him. I cry every day, usually when I am alone. Watching TV is another trigger for me. It makes me really sad to see sadness, celebration, and people who are happy.

 

[soonerwife]

So sorry beachgirl. This disease sucks!

My husband has bulbar onset and hasn't been able to speak in about 18 months. It is so frustrating to not be able to communicate. Luckily for us, my husband is still able to send texts via the ipad. The thought of that ending scares me horribly.

My husband also has FTD which makes it difficult for him to communicate as well.

Seeing them upset is so heartbreaking. All we want to do is make it better.

Hugs! Just know we are here for you!

 

[beachgirl]

Thank you for the support and understanding, that alone helps lessen the frustration! I'm sorry to see there are others out there with the same issues, but it helps to know someone else gets it. Tillie, yes, I believe he has FTD, since he really struggles with finding even one or two words to express his thoughts. Except for breakfast! He can tell me exactly what he wants for breakfast, lol. I wish he would use his ipad to communicate, but it seems to do nothing but confuse him. I made a word board, and yesterday asked him to point to yes or no to help decipher what he was telling me, and he could not/would not do that, so sadly even the most basic help aid is not doing it for him. Sue, we will be face timing his brother today; thanks for the suggestion! I honestly never even thought of that! Thank goodness for the board!

 

[adrivtham]

Hi Beachgirl,
My husband had the same problem, he couldn't put words together so the communication was a matter of yes or not and even that was difficult ....He took nuedexta and lorazepan for depression and it did help.
A Big sisterly hug.

 

[Manhattanite]

Hi Beachgirl,

My husband also had the same issues. The FTD caused confusion with grammar, with yes and no... It took all my strength to not lose patience because even one as a CALS, knowing what this disease entails, can be frustrated by the faulty communication.

This disease is a river of tears for both PALS and CALS, but thank God for this forum and all the helpful people!

 

[Livealot]

My husband lost his ability to speak a year ago. I miss his voice , and personality. The medication he is taking has helped with his bouts of crying. It's devastating to see .Sending you a hug.

 

[beachgirl]

Manhattanite, so true, patience is sometimes so hard to find. I pray for it every morning! And yes, livealot, how much I miss hearing my husband's voice, and just daily conversation. So unbelievably sad for all. Big hugs to you both.

 

[beachgirl]

It's been two months since I posted that my husband had a rough day. Sadly, he passed yesterday, only seven months from diagnosis to end of life. He bravely challenged the disease and did his best against all odds. My thoughts and prayers will be with all the CALS and PALS who continue on, I hope you find strength, compassion, restfulness, and love. Take care. Hugs.

 

[ShiftKicker]

Beachgirl, I am so sorry for your loss. I have moved your post today to it's own thread, which can be seen here: https://www.alsforums.com/forum/memoriam-memory/40571-beachgirl-s-husband.html