Tomorrow evening we leave for London for two weeks. I look forward to visiting Jane and Ralph and hopefully relaxing more than on a usual vacation. We aren't taking Raquel on this trip, but Ralph and Jane are good about pitching in and helping.
Anyway, I just wanted to add a few updates on Dennis before we headed out.
He is almost at the point where he is unable to eat any real food anymore. Chewing is pretty much out of the question, and swallowing is becoming iffy. Thankfully the new nutrition he is taking through his feeding tube seems to be working better than the sticky-icky glue that he was taking in before.
He is stiffer than ever. It is getting more and more difficult to lift him without the aid of another person. He has been taking a new drug the past two weeks prescribed by his neurologist last month, but it isn't helping. Actually he decided today to stop taking the medication; we are hoping that the medicine is the cause for this increased stiffness.
His speech has deteriorated to almost nil. There are times some words are understandable, but sentences are out of the question. We communicate with me asking questions and him answering mostly with a yes or a no. At times I ask him the context of what he is trying to say, and I am able to piece together something. At other times we both just shake our heads and move on.
The Dynavox is helpful, but only if he is able to lift his hand to use it. Some times I lift his hand to the keyboard and then he is able to type out something. Thankfully he has put in many key phrases and sentences, and can often find one that more or less communicates his needs. Real conversation is now a thing of the past.
But, I must add, that we continue to love each other, continue to enjoy just sitting by each other and I continue to tease him as he continues to laugh.
Until after London,
Ann and Dennis
9 comments:
Ann, Johnny has also lost his speech except for occasional one syllable responses. We bought an iPad and a special speech application, but it is too sensitive for his poor fine motor skills. We do use a simple alphabet chart for short sentences. This loss may be the cruelest part of MSA.
I hope you have another great trip.
Oh Ann. What can I say.
Isn't there some sort of eye-gaze technology for typing on a computer, that patients with diseases such as ALS use? I'm sorry that I don't know the details.
Marsha, I agree, this is one of the most difficult losses. Chris,(I assume) he doesn't even have the eye control.
I told Dennis yesterday that he has had 60 some years to talk - and quite the talker he was! Now he has the opportunity to listen. I don't think he really wanted to hear that, though.
Anne, be glad you got him a feeding tube. My mom never wanted one and when she got to this point she didn't live long. At least you will have more time with Dennis. She didn't want a feeding tube, and we gave in to her wishes. Sometimes I wish I had tried to convince her harder. But I did what she asked. Take care. And in regard to your other post. I thought God had me on another list too. But believe me, it doesn't work that way. :)
I like that you used the word "continuing," don't you? It proves that love, real love, never waivers. Kisses to Dennis, and hugs for you!
And I suppose that you kind of understand eachother on many levels by now. Even if the loss of verbal communication can´t be easy to take..for either of you.
love/iva
You are both in our hearts.
Wow, I'm amazed at how much your Dennis has in common with my mom. She died a month ago and we had to make all the same types of decisions you have been having to make. My greatest regret is not having at least tried a dynavox eye tracker device. I desperately now want to know what her thoughts, memories, and wishes became. I wish we'd at least let a rep come and try it out. She was unable to communicate the last couple years of her life. I did try having her look at yes or no on paper and that seemed impossible for her to carry out. I personally really regret hospice.
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