APHASIA

Biggles · April 14

I need some help. My DH has aphasia and his speech is getting so bad I can hardly understand him, he chats away especially at night and i have little or no idea what he is saying. Communicating with anybody else is so very difficult, most people haven’t got the time or patience to stop and try to understand him. It’s another dam horrible and hard part of this rotten journey. He is gentle and happy and very sweet, hasn’t shown a lot of frustration yet but he used to be such a great talker and ideas man. How do I cope with this? How do I make both my DH and myself feel ok with this almost non verbal existence? Any advice, help or understanding would be great I’m feeling pretty low. Thanks 🙏

annie51 · April 15

I am having the same issues. It’s heartbreaking to hear him chattering on without making any sense. I miss the long conversations we’d have while walking on the beach - now it’s just repeatedly counting how many boats he sees and making sure we don’t step in the holes people dug on the beach. He asks me non-sensical questions that I sometimes can fake an answer for but sometimes I just don’t know what to say. When he talks to strangers while we’re out walking, most of them are very patient for a little while before moving on and I’m thankful for that. I have no advice, just to say I understand and feel your loss.

SDianeL · April 15

so sorry you are going through this. It’s so sad. There are two things going on. Aphasia and chattering. Chattering is due to anxiety which makes aphasia worse. Here is a link to tips that may help. Hugs. https://www.nia.nih.gov/health/alzheimers-changes-behavior-and-communication/communicating-someone-who-has-alzheimers

Kat63 · April 15

I totally understand your feelings right now. My DH was at this stage last fall and it was really hard on me. It was the end of any communication between us and I really was down for a few weeks. Like all the other changes this disease has thrown at us, I adjusted and it’s the normal now. My DH’s talk is pretty much all word salad and I am getting better at listening to his tone and answer with simple replies like “yep I agree” or “I know it’s hard”. We know them the best and most of the time I know what he wants or needs even though his words are totally off, but sometimes I still don’t have a clue, so I’ll reply with “sorry babe” and ask if he needs a drink or snack. It has gotten easier for me to deal with and hope the same for you.

KathyF1 · April 15

My husband’s speech too has evolved into senseless made up words, I hardly ever know what he’s saying. I just answer his questions with “I’m not sure” or “maybe”. On his case the neurologist diagnosed him with both Alzheimer’s and Frontotemporal Dementia. FD attacks the front of the brain that controls language. I know how lonely you feel. You’re constantly pretending that you understand them and all your energy goes towards making them feel understood and “normal”. Exhausting. For me I have to talk to friends, family often. It’s so important to stay connected to others who “fill you up”. Reach out to those that you can really share with. Praying for you to not feel alone!

Biggles · April 15

https://alzconnected.org/discussion/comment/240933#Comment_240933

Thank you annie51 and a big thank you to everyone for their replies it’s just nice to know that you are not alone. SDianeL I’ll check out that site Thankyou. You know we have a friend at Sailability whose husband is totally disabled in a wheel chair ( he’s only 48) through catching a virus (such awful luck) he can’t talk, makes gestures and loud noises but people treat him differently to my DH it seems with more patience and care. This dementia is really awful and so misunderstood.

CindyBum · April 16

Oh yes. The beginning loss of speech was the first hard sign that something was going on with my DW. I miss talking with her so much. Twenty years in, we always had something to talk about together.

Now, it's largely gibberish from her that I only occasionally understand and can guess the meaning. I try to hang in to get there with her as much as possible, but it's not easy. I find myself not talking to her about things I have going on now, because she is also losing her ability to understand. Somehow, we're still sort of communicating, which I say with sadness and gratefulness.

Coping, for me anyway, is like with all of the changes so far…each engagement at a time, trying to engage with her with gentleness and patience. It’s hard, hard, hard.

I definitely understand.

Biggles · April 21

Thank you CindyBum for this message. It’s comforting to know we are not alone but it’s so sad not to be able to communicate properly. I work hard at trying to put meaning to the mixed up and left out words; I sing ‘ditties’ about what we are doing eg “washing dishes with my sweetie at the kitchen sink” and showering is “singing in the rain” and shaving is “does Santa Clause sleep with his whiskers over or under the sheets” we laugh a lot but I cry a lot.

l7pla1w2 · April 21

My DW's condition has evolved to the point that her sentences have well-formed syntax, but the words are either often incorrect or generalizations. She will point to a radio or clock or TV and call it a "machine". She will describe something but use the wrong color.

I'll add this parenthetically: If your LO is still driving and were to get into an accident, he would absolutely not be able to accurately describe what happened. And the description would be even worse depending on how poor his short-term memory is.

Biggles · April 22

Thank you for your caring comments. My DH hasn’t driven now for over a year, handed in his driving licence and got an id card with picture that looks identical to a driving licence he’s still got his boat licence but we no longer have a boat so all good except he does get cranky about not being able to drive. His speech is terrible and the lack of communication makes me so sad, sometimes I smile at his ingenuity he whistles me if I am in the garden and I will come up and give him a kiss and a cup of coffee or whatever. But during the night he can’t tell me if something is not right and the guessing game starts. It’s a cruel disease.

APHASIA

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