Just keep talking ...

[bazooka111]

I’m starting to hear my Mom repeat my statements back to me I would say you look beautiful Momma .. she repeats it right back, and then seems to catch herself and just smiles.

I miss our conversations ... so very much!

Heart breaking tonight.

[raincitygirl]

The loss of language and conversation is one of - if not "the" - most devastating symptom of this disease... As long as there is conversation, the person is there, the relationship is maintained; even the physical losses can be managed (for a good long while). Losing language makes it hard to know how much cognition is still there (often lots is!)

I feel for your heartbreak, Bazooka - I felt it so much with my husband.

Hugs XXX Anne G.

[bazooka111 in reply to raincitygirl]

I don’t want to accept the fact that it is going to some day be completely gone. I’ve been strong — but, like tonight I have my moments. Thanks for your reply.

[honjen43]

Have you tried saying the response you might expect from your mum? "You look lovely today, Mum". "So do you dear".? If you get a bigger smile, maybe your mum still understands what you are saying to her.

You comment that your mum smiles when she has repeated what you say. Could it be that she understands what she is saying, but cannot formulate the sentence? Nevertheless, she is still there inside trying to communicate! Try " Love you!" and blow a kiss! That is always worth repeating!

Hang in there! We know how heartbreaking it can be!

Hugs

Jen xxx

[dollydott]

Oh I so feel for you on this I remember my mum when she first started doing this repeating instead of responding.

I agree with Anne it's devastating and I too think it's the worst thing to lose that communication.

It is heart breaking. ☹

On a positive note I have noticed that when I'm happy or laughing and sharing a story with her she responds more. I am never going to have a full two way conversation with my mum ever again and I have cried so much over this one but I continue to chat to her and cherish her smiles, laughter and her few soft spoken words.

She is still there with you and understands what you say to her and to tell her she looks beautiful is lovely and will give her so much joy.

Sending hugs to you both

Lynda x

[bazooka111 in reply to dollydott]

Thank you so much dollydott - It comes and goes ... I try to keep a strong front, but —- sometimes it all just overwhelms me. One day at a time ...

[pankaj911]

I agree...it's very difficult to accept this change and live with it. My mom suffers from PSP. She and I used to have long conversations every now and then. Now she mostly repeats after me. It's difficult to have a normal conversation but I do keep trying!

Once I got really fed up and told her that "I wanna die...". That kinda jolted her and instead of repeating, she said, "Don't talk crap!" I swear I had tears of joy that day! I was just happy that she didn't repeat after me!! At times, I show her pictures of lemons or eggs (or something else) on my phone and ask her what it is. If she knows, she responds... But, yes, normal conversations are hard to happen....still we gotta try and make the best of what we have, and what we can!

[Tippyleaf]

Hi this is known as echolalia, sadly part of the PSP/CBD/FTD package! My husband goes through phases of this, early on in his disease it only happened when he was angry now we have a few days or a week of it then he reverts to his “norm’ Stimulation seems to help looking at old photos or if it is still possible to get out that may encourage memories etc so hang in there it may not yet be a permanent fixture.

Love Tippy

[bazooka111 in reply to Tippyleaf]

Thank you Tippy - you are so right! It seems to come and go. She is so sharp ... I was driving yesterday (mani / pedi day), and I turned the wrong way, and immediately corrected me with proper directions.

[DenB]

My husband used to do that when he could talk and I too miss conversations with him and the sound of his voice.........

Dx

[bazooka111 in reply to DenB]

Is he able to communicate verbally at all DenB? Did it just happen gradually, where he just stopped? How long has he been diagnosed?

[DenB]

Hi bazooka111,

He was diagnosed 2013 but first signs 2010. Obviously he is in the late stages...not sure how many more stages, if any, to come.

He can't talk at all now, sometimes can lift his eyebrows. Being unable to talk has been a gradual thing but hasn't been able to talk for a long while now. He sleeps a lot.....

Denise X

[bazooka111 in reply to DenB]

I’m so sorry. It breaks my heart to read this. It’s so hard to sit back and feel helpless. My Dad passed away almost two years ago from cancer, and my Mom took such good care of him. But, we were going to the Doctors all the time, always some sort of treatment - with this CBD ... few Dr appointments, or just more of the same.

It’s the hardest journey to process and wrap my brain around. Mom is using a walker now, but she is becoming unsteady - I am already thinking about what’s next and how I am going to manage a wheelchair in her daily activity. One day at a time. Thank you for sharing - prayers for you both.