Mom has "Primary Progressive Aphasia" Dementia.

Hi, my mom is 66. She was diagnosed with PPA a year ago after we. Decided something wasn't right. Slurred words here and there as well as a being less affectionate or emotional. Now its been one year since the diagnosis or one and a half since the first suddlle hints of a problem and she can barely walk. She says very little. Yes, ok... Anything else is veru rare and laborious. She seems to be obsessed over whatever cones to mind and won't leave it be until its done. She basically can concentrate on one thing at a time.. I'm noticing some confusion here and there even though neurologists says she's still mentally there. Just wondering if any of you can shed any light on this rapid decline. A year ago she was almost perfect. Now she can walk very little and can't speak. Seems so fast. What can I expect overall given everyone is different to some degree

I know exactly how you are feeling...I mourned for my sweet mom long before she was at the end....but it's still nothing like what I expected. Just brace yourself...and take time for yourself too. It's an agonizing process...and it's important for you to get rest and eat, so that you can endure it with her. God bless you ...it shows the love you have for her. I pray for peace for her and you soon.

We'll it has happened hospice is their now 3days aweek she eats then she does not eat, it seems she eats with one caregiver and wont eat with another, she has an air matress for comfort,she smiled today, I check on her daily even just a stop by in the middle of work. sometimes she sleeps,so I leave. this has been a long journey with mom and dad, what will be will be and I think its o.k.

Momslife you can call Hospice if you think she needs them sooner. Do not hesitate to call. If she is not eating or drinking she will not last a month. I'm sorry ...it's the hardest part of the journey. God Bless you and your mom.

Thankyou ; hospice will be going over to moms next month ( i don't know how they determine when to come) I don't like seeing mom dehydrated like she is , but we are following her wishes. It will be over for her in limbo as she is and I think she'll be o.k. with that. god bless,
momslife

It sounds like your mom is closer to the last stage. Hospice can help you out a lot. They can keep her comfortable. If she has the advance directive...there is really nothing else you can do but keep her comfortable. I'm sorry ...it's going to be a really rough thing to endure. I was there not long ago. My mom passed away January 9th she stopped eating and drinking after the first of the year...But having Hospice for her was a big relief. God bless you for being there for her.

I'm sorry it's difficult for her to express herself. When mom got that way..she would be in her room singing her troubles. When she sang it in a song the words came out easier. But there were days when she would babble and then say something like? Are you satisfied with that? I would simply nod....it's such a frustrating disease. I do know that if she is experiencing aphasia...her brain is slowly dying...I wouldn't recommend her not to drive. She could easily forget how or get lost. It's so scary for them at this time. I agree with Jeanne...your mom could have reacted to the death of your dad. But just the same..stress or she is losing her abilities. I'm so sorry..it's such a hard thing to watch. God Bless

Is Mom signed up for Hospice yet? That would be something positive you can do. Remember that hospice is there for you as well as for Mom.

Do you mean that your Mom's wishes to not have tubes and iv-feedings is a challenge because you would like to see her have them? My heart goes out to you. It is hard to respect a loved one's wishes if you don't agree with them. This is one of the things you could talk to the hospice nurse, the social worker, and the chaplain about.

Well an update of mom who has PPA/dementia, she can't walk at all, she says some words and we know what some that- arent- said -right- mean. she is forgetting how to suck on her straw for liquids, sleeping alot in fact her bed is now in the living room. she gets sponge baths,she totally recognizes sis and I, and we see her a couple times a week , we are going to be their more often now, Dr. feels hospice should be with her a few times a week. My biggest challenge is no tubes or I-V feedings in her wishes. every thing is so down We can't stand all the negative . have any positive suggestions we'll take any advice we can get.

vikilynn, I am so sorry that Mom's condition is deteriorating so fast. Hugs to you.

The Mayo Clinic website has this under complications: "As the disease progresses, other mental skills may become impaired. If this occurs, the affected person eventually will need help with day-to-day care. And depression is common in people who have primary progressive aphasia."

It is so good that Mom is still quite functional. But those small signs of other mental deficiencies probably mean she should not drive. If they occurred only immediately after your dad died it might just be that the immediate emotional stress was overwhelming. But if she continues to be confused in small ways then she definitely should not drive. Packing frozen food might make a mess in the suitcase, but similar confusion while driving could be fatal -- to Mom and/or to others. I am so sorry that you are dealing with more serious levels of this horrible disease, and so quickly.

Condolences on the loss of your father.

Well.. I hope everyone is still checking in. I am in need of some support or answers. My mom seems to be deteriorating so fast. It's been a year since she began showing symptoms. She is now showing signs other than speech deficits. She doesn't speak much and its a struggle to decode but now when she thinks of something she wants its now now now.... She can't relax until its done. She also doesn't seem to understand things. My dad died last week and while packing she tried to pack frozen food?? She had trouble figuring out how to unlock the door... Small things. She's still otherwise functional and still drives. That will need to be reassessed soon I'm sure. Do you think the PPA is now spreading to other areas? Do any of you have similar experiences that could help?

jeannegibbs; We know each other soo well that usually our/her face tells the story;
So we know when she is going through crap, she rolls her eyes and say's nenenenono,( something like that) it depends who the " Da da Da" care giver of the day is...: and we know who she likes and dislikes, so strange its like we read each other and laugh our hiney's off! we actually have a horrible situation and we are making fun of it in a good way, Unless its a "bad Day" then she rambles really mean , I swear its because care . oh have to chech my computer a virus warning sorry gatta go.

vikilynn, different kinds of dementia affect different parts of the brain. I am very sorry that your mom forgot her granddaughter's name. The ability to remember names or remember people might be the last to go in some cases, it might stay with the person to the end, or it might leave long before the end. I hope you can comfort the granddaughter that there is nothing personal about the forgetting ... it is just part of what is happening in Gramma's brain.

Hugs to you.

My mom is having more bad days tha n good. Slurring words on top of having hard time talking. Yesterday she forgot her 13 yr old granddaughters name. That got to me. I guess I assumed peoples names close to her would be last to go. Really bummed.

You can now get her to laugh? That sounds like a nice improvement. Congratulations!

Have not been able to respond in quite some time. Mom who has (PPA) and dementia has caregiving in home 24/7 now :( she is "with it" one day and out looking for a door in the wall of no doors the next. we can get her to laugh now,
when care first came in oh god it was really hard for her. Mom now can't walk much and is having a hard time swallowing; bad sig ;and i don't really understand health care directives no tubes for nutrition etc.. i can't commit i don't really know but ; hey i've dealt with dad with alz., and mom with PPA, I'm tired, but get through it with them ; 9yrs. with dad and mom diagnosed the year he died what a bad card, but it's life and our family we are here for.

Do you have a communication book yet? Therapist for my mom says its important to use it now so they will be familiarly with the pictures when they are unable to speak. It's also important to take personal photos of family and house objects and add to the book.

Nurser rhymes! How interesting. Thanks for passing that along.

My mom has aphasia too. She gets frustrated when she can't get the words out, or says a whole sentence that is totally out of context. We laugh alot... what else can you do?... and I tell her to take it slow. She eventually can make it known what she wants to say.
Her doctor told her to spend some time a day saying nursery rhymes and singing songs from her childhood. He says that these are the earliest things we memorize, and by remembering them we strengthen connections in the brain and make them stronger to build more recent memories with.
I do think it is helping.
We have fun singing in the car.