Does anyone have suggestions regarding what to do when all verbal communication is gone, typing/writing is gone, pointing to stuff isn't working because this requires us guessing all the possible answers and often what is trying to be communicated is too complicated for a communication board, thumbs up/down is unreliable at best, even if you give a long lead time and hand squeezing is useless because intentional movements on demand is impossible. She can't stick out her tongue either.
Thank you in advance for any tips.
Lara
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LARWLSN
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So sorry to hear this has happened, we are in the same situation with my mum. I'm mainly guessing and checking my answers with her lots of times. Her eyes seem to day a lot. It's very sad so sending love and hope you get a better answer xx
Thank you for responding... the frustration and wailing that results from her inability to communicate is heartbreaking and understandable. It is hard to accept we won't be able to get her what she wants reliably ....or at all.
I am sorry you are at this stage as well. I keep having to dig deeper even when i think i have nothing left.
We have stopped trying to work out dad is saying, as giving him all our guesses is just annoying him, and it highlights the communication is failing. We just tell him to relax and to tell us later when he can get the words out and stay with him until he does indeed sleep or relax (hes in a resthome). He has forgotten anyway the next day.
Forgetting by the next day is something we have started to rely on. Unfortunately, trying to get her to relax and try again later just gets her even more upset, because often, once we somehow manage to figure out what she wants, it is something time sensitive.
I hear you. The most time-sensitive issue for my Dad is the toilet. He forgets the word toilet or urine bottle, and says something completely non-sensical like "I want the remote now". We can see now by his body language, he starts to fidget and starts to try and get up etc so we know that way. Its unfortunate, but we have just apologised and explained that we are doing the best we can and we will support him no matter what and be there every step of the way.
The body language is key -- i agree with you. If you pay attention enough, you get some signals you can predict correctly.. but it is always, always the more complicated bits that come up that leave us completely at a loss. We have such fear there will be something very wrong, such as pain or sickness, and we won't know. She wails, but never when she is physically in pain. It is really astonishing.
Do you think the crying is from enormity of the illness and the effect it has. My dad cries sometimes, like when we leave him at the resthome after visiting. Its very sad....I personally hope he does not linger too long. That said there are days where he is quite alert and can manage a laugh or two.
I think she wails because she has no other way of communicating at this point. And, i think she gets so frustrated at her situation ... who can blame her. I would be wailing too. I spent a lot of time crying as it is.
We are in a similar position but fortunately mum can still move her foot for yes/no answers and spelling something out. It is slow and like others have said can be unreliable. What resonates is the wailing with frustration. Like you said it's completely understandable but I find it really hard to deal with. Digging deep is definitely order of the day, so so hard. Sorry I don't have a solution for you.
So sorry you are having a hard time with wailing. When I can, even if it is against my better judgement, I find myself giving in to whatever compulsion she is stuck on.
haven't tried that one yet, will give it a go. The real issue is, if you ask her to do something on purpose, she generally won't do it. She can imitate you, but that obviously doesn't help when trying to get an accurate response to a question.
We put words on index cards using big red letters for communication. Depending on how my loves sight is that day depends on level of communication. Yes she get very angry when we can't guess it correctly. Best wishes
Hi we are in the same situation right now. Can't understand what mum is trying to say have to guess. When I try to ask her for example if she has finished on the loo she just stares into oblivion. She won't attempt to answer. It is very frustrating for the both of us. You are so right when you think you have dug deep as you can go you have to dig even deeper when you hardly have anything left. So sorry I couldn't help. Keep strong. 🌸
I have the loo "chats" also... i find i get marginally better success if i make eye contact with her when asking the question. But that could just be me hoping that is making a difference.
I’m the patient here. I’m grateful for your honest conversation here about what it takes to get thru every day, every moment, with your loved one. You’ve loved your person for years and years, depended on their input and guidance, and now that’s all but gone. But they’re still there.
It seems the most important thing here is to cut down on all the frustration and bad feelings. It’s exhausting you both.
Might I suggest that you simply make the best choices for them, to cut down on your weariness? In the big picture these everyday little tussles that turn into giant skirmishes are taking away from important moments of peace as you both go through what is a natural process.
Your loved one will wail whether or not you try to stop it.
They will be angry no matter the choice you’ve made.
They may fight over the smallest things.
It’s a well known part of the disease.
It is not aimed at you even when it looks like it, and the best thing you can do, for yourself and them, is to count to ten (count to three if that’s all the time you’ve got) and make the simple choices for them. Save the frustration for the meaningful stuff.
Talk to them about it. Tell them you recognize that asking them to make all these choices must be very hard for them,too. Picking out letters one by one can be saved for when they need it. You’ll make the easy/simple choices for them and you’ll try to do your best. You hope they accept them and know your choices are made with best of intentions. Then it’s up to you to make whatever selections of clothes to wear, what meal to eat, what tv show or music to play and other selections.
Thank you for your insight.. i have started to pick my battles, thereby making them fewer, which is, what i think you are saying. I am not able, however, yet, to make decisions/choices for my mom that she hates.... without having to deal with consequences.
What do you suggest when there is something she clearly really wants to communicate -- not because i've asked a question.. but because she .. maybe... wants to ask a question... and she can't get it out of her?
I do talk to her about how all of us, including her, are doing the best we can... i don't think she really sees it that way. Unfortunately, i think we all feel like we are failing on every imaginable level.
Thanks for sharing your experience. I was concerned I’d sounded like I was lecturing to the experts after I posted it. If anyone saw it as that I apologize. You are all far wiser than me.
Those are lovely words. We carers are so grateful to hear from someone who is living the experience. We are just looking in from the outside (and flailing around a bit! 😀😀). Thank you so much for taking the trouble to tell us what it is like.
Have a good Xmas and New Year - spoil yourself with a pint of Baileys! (Ruth's tipple)
That’s the time for all the communication processes. I can’t tell you how you’re going to do that. Tell them it will be frustrating but you’ll get through it together.
I’m deeply sorry that you face this. Keep talking on this board with people like you for ideas.
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