Dementia and Aphasia

Bayviewgal so sorry you both are going through this. Like everything else about Alzheimer’s, aphasia is very hard to deal with. My dh has this also. I have learned to ask him to try and give me a clue, try to make a game out of it, when I can get the word he is trying to say, then be excited when I can get. Sometimes we can both laugh and be excited I “got “ the word right. Doesn’t always work but I just keep telling him how much I love him and will keep working together. That seems to help calm him down. Just knowing I will help him.
Best of luck and I’m sure others will jump in with other suggestions.
Hang in there and know you are not alone in this horrible journey.

We are caregivers for my husband's brother Ken, who is 68 and in advanced stages of FTD and PPA. The aphasia is definitively the hardest part!! He doesn't know many words at all anymore - whether he's trying to say something or he's trying to understand what we're saying. So trying to guess at a word isn't always an option for us. We have used pictures with some success. Sometimes I'll find icons on the web and create a "sentence" using pictures when we're trying to communicate something to Ken (I don't draw well). When Ken is trying to tell us something we've learned to understand new meanings of his word. For example he uses the phrase "wiped out" to mean someone left or something isn't working.

I'd read that physical touch is really important to people with dementia because they still understand it. So we hug Ken a lot, and often just visit with him in silence - maybe watching a movie - to show him we love him and care about him. We help him a lot with his electronics because he also finds them too confusing now.

Hugs to you! We definitively know how hard this is!!

I suggest having him “talk around” the word he is struggling to recall. Using familiar descriptors instead of precise terms seems to help. For example, using “Big truck, big wheels” instead of searching for the term “Semi-truck” can be relieving in aphasia. Hope this helps.

My husband was diagnosed with Early onset Alzheimer’s in 2019. I believe I would have noticed the signs sooner if I wasn’t caring for my mom in our home. It progressed to the FTD over the next 2 years and we both retired. He couldn’t use the required technology at work. Last year his neurologist said the diagnosis has moved to more of aphasia. To help him with communication, we listen more and then ask for one more word. He has lost the meaning of words and can’t always follow a program on tv. My daughter and I have become ‘the ladies’ of the house. I read an article on the AARP Alzheimer’s website which explained caregiving as one step at a time. Since I’ve alway been a multitasker, the day goes smoother when we just go slow and focus on one item/task at a time. Mornings are the best. Hang in there as it is all progressive yet each case is different. He is very sweet and cooperative. The 36 hr day, a Johns Hopkins Health publication is helpful. I ordered from Amazon.

Yes I am. My husband was diagnosed at 50!! 5 years in now. In 2018 given 3-6 years to live.
The cognitive and judgment has now taken over.
It’s a horrible disease in my eyes, a slow death. I hate everything about it. A guy who was always helping others, hard working, and a great dad, now someone we don’t know.
We have anger issues, can’t keep him home, recently walks outside in his underwear, and are really considering an assisted living.
It sucks because he’s too young to qualify for anything and makes too much in SSDI! Makes too much because he worked his butt off and now gets no help.
I too have a progressive disease and it sucks to have to have our 23 year old take care of what we can no longer do.
But life goes on. One thing that really bothers me is that others think that he’s not that bad, but they don’t live with it 24/7.
Take away the keys sooner than later, start checking with county for help ahead of time, and notify and educate your local police department of your situation. They will think they are diabetic, drunk, or on drugs. Been through it all.
Being diagnosed so young, it’s taken an emotional toll on me. What was an everyday kiss, pat on the rear, everything gone. Separate bedrooms now, to ease the stress and smell from a once a week shower. Don’t get me wrong, I love him, but it’s different. It’s basically a roommate situation and that’s it.
I feel sorry for our children. I’ll be okay but it’s them I worry about.
Such a rare disease too! We’ve done research and are donating his brain. If you haven’t done research, please do! My heart goes out to all of you!

Thank you Joy for your suggestion. Every now and then I DO "get it" and we do get a little excited. But even then, he sometimes loses track of what we're talking about and then I just have to look at him like a deer in the headlights (just not too extreme) and strain to figure it out. When choices are appropriate I give him choices when he can't find the word and show him the choices. Like... orange juice or chocolate milk. or.... the black shirt or blue shirt. From what i understand from his sister is that Tom dealt with dyslexia when he was younger and at times he displays some of that again. But that's an easier hurdle to manage. He's also losing his ability to write.
Thanks for your warm words of kindness.

Thank you for sharing what is helpful for you. I've been to a few discussion groups/boards about dementia but i haven't come across discussions about PPA and i really appreciate you responding. It makes me feel better (for lack of a better word) to know that i'm not alone in this part of our journey. It's like Tom's brain is giving him different words to describe something. Like...its always been called a "remote control" but now i have to say "channel changer".
I've read the same thing about physical touch and so I make it a point to caress his back or shoulders or hold his hand everyday and the soft "purr" he gives me when he feels that, tells me he still remembers my touch and still enjoys it.
Hugs back to you!

I'm so sorry to hear about others' journey through this disease...it is horrible, and there is so little we can do as caregivers...except to keep caring and loving the best we can. I do believe they feel our love still - even when we have to place them into a memory care community.

On the topic of showering...do others have that same problem? Ken used to be very preppy and well groomed - and now he won't shower and keeps wearing the same clothes. He's also only eating once a day now (breakfast). I don't know if these are symptoms of the disease, depression, or if it's because we had to move him into memory care.

Hugs & love to all of us going through this!

Showers are continually an issue now. Constantly reminding him to take a shower and then hedoesn’t do it anyway, he wears clothes that are dirty, man’s he hardly shaves anymore. I don’t know who this man is, but I’m trying hard not to give up.

So maybe it is the disease. Maybe they lose the concept of hygiene. I'm so sorry. My heart goes out to you. I'm finding some comfort in knowing we're not alone. ❤️