Hi,
Here are some great comments from the Facebook recovery community too:
Leisa says: Is she still an inpatient? If yes as for a speech pathology assessment and ask to be included in the speech sessions so you can learn how to help. If she is in a care facilty as if you can access speech pathology via MyAgedCare, or privately. I am assuming you are in Australia. One tip we use is simple yes and no communication to start with. I also use a portable white board when i am with aphasia clients (get from the reject shop). The other thought would be create a simple life board, include how she likes her coffe or tea, who are her significant family members, favourite foods, favourite activities and pets, place it where care staff and visitors can see it. If there are activities programs make sure staff include her, its important she has opportunities to participate, recovery happens in lots of ways. Private message me if you want.
Linda says: Yes, the Australian Aphasia Association is here for you. Follow us on Facebook or look at our website. A speech pathologist will also be able to help.
To help your grandma fully understand, use photos, or draw or write keywords. Slow down the conversation and give her time.
It sounds like she has a ‘perseverative utterance’ and may struggle to say things that are not ‘do do do dah etc’. Better Conversations is a London website that has good videos of how to communicate
Toni says: Can you make a photo book for her of family members and places that were important to her? You can add peoples' names/ captions to the photos. Keep talking to her and if you know she had some favourite books read them to her. Also play some her favourite music and encourage her to hum/sing along. As hard as it is, know that she's not frustrated with you and would be appreciating your visits.
Lorraine says: give her a hug xox don't give up ... I have aphasia from my stroke it gets better
Jo says: My nan is not dissimilar to this, her stroke was 4 years ago; she is now in high care and we communicate a lot non-verbally.
Gentle touch is important. Holding hands, head massages, letting her touch flowers brought in and helping her smell them.
If she can swallow I find brining in a yummy treat speaks a thousand words. If she can point holding up two options or asking plain yes/no questions if she can nod or shake her head.
For us it can vary a lot day to day, some days you get a lot of communication others she is too tired. I am lead by her in how engaged she wants to be. It’s important to try and be reassuring.
Sending you and you family lots of love during this tough time.
Helen says: Actually, it’s a speech pathologist who may be able to give you some advice. The situation you are describing is very frustrating for everyone, especially the person with aphasia. She may benefit from maintaining eye contact & touch, as mentioned above. Don’t let you frustration get in the way of giving her opportunity to connect with you. Hand massage can even make a difference. Music & songs that she knows is also known to help as sometimes people can sing when they are unable to speak. If she can follow instructions, you could try eye blinks for yes & no.
Tracy says: Speech pathology assessment first of all. She probably still understands what you are saying to her but try not to change subjects too quickly . Start with questions that can elicit yes or no answers and she can give you thumbs up for yes and thumbs down for no. It gets better, very slowly though - and the other thing that will happen is you will get better at figuring out what she wants. If she is open to it - try a book with photos of family and friends. Talk about things, include her in conversations - she will still have so much to say. Good luck!!!!
Melinda says: Has she been seen by a speech therapist?
You could try asking yes no questions, and have a big yes with a tick and no woth a cross written on paper so she can point or look at the answer to. People with aphasia get their yes/no mixed up so it's good to have it written as well.
Look at photos, talk to her about her family and familiar things, surround her with love and language.
There are lots of good resources on aphasia organisation sites e.g. aphasia.org.nz, aphasia.org.au
Lorraine says: Touch.. pictures of items may help. All my love. My beautiful father passed 3 weeks after his stroke. Xxxxx
Eva says: For non verbal special needs kids/adults, having visuals help the kids communicate their wants eg, photos of toilet, eat, drink, happy, scared, tv, family photos of individuals. An OT can help or just google compics to get an idea of how to set one up.
Steve says: Her being emotional may be a misunderstanding on your part. I was the same and sometimes still am, its confusing body language for others that is misinterpreted. Its also not rewiring of emotions so shes not going to suddenly start stabbing people either. The way i see it is like when i was breaking through my physical paralysis i had to use enormous (still do) to move my leg and so the movement was strong and uncontrolled but it was a start. I think the sudden tears is similar, its a strong uncontrolled emotional shift internally that manifests as crying externally where its often misinterpreted. So ahem, dont take it as face value. The horrifying part for me is inside im thinking clear and normal as ever but so frustrated that the body is lagging behind. Dont forget communication uses muscles so there is still paralysis there. Its doesn’t wear off on its own , nor does it equally everywhere.
Being there for her is vital, dont treat her any different than you used to. Its very likely shes the same person on the inside and desperate to break free from the frustrating situation. Will power is vital for the sufferer to hang on.
Her situation may not allow her to return to normal and her efforts inside will be exhausting and she may feel her body worked but your reaction tells her it didn’t.
So dont push too much to get an outcome from her that’s normal. Think of Theo in Breaking Bad, all he had was a bell. So instead start with what she CAN do and YOU learn to communicate with that. So she may think “yes” and left left big toe wiggles. Dont then say to her “toe wiggle means yes”. Because to her she didn’t necessarily know she moved her toe . So instead ask her to repeat “yes”, sorry I didn’t quite hear that time... louder please. You need to pay attention to her bodies movement whatever it may be. And use it. So start with maybe observing her from a few steps back while she’s interacting with someone and look for something out of place happening when you’d expect to hear a voice. It may already be clearly there and you’re missing it while she thinks she’s talking clearly. Its not dementia its signals to control speech muscles being waylaid elsewhere. Aim to get one reliable reaction and then start trying to break it into two distinct ones getting her to repeat yes and no to you reliably so you can communicate with questions. Can she control her eye movement? Up for yes down for no maybe? Sure its frustrating and tough but its far worse for her and every communication is draining her energy fast so you need to figure it out yourself sadly. Theres no guide book here and doctors make false assumptions, she’s struggling to find her way back to you and you need to try to find your way to her too.
Very important though, just be there as much as you can no matter how hard it is for you. People not showing up feels like extreme isolation and abandonment, at least it does for me even now.. keep interacting and help her senses with positive inputs. Bring her favourite perfume to smell, her pillow from home. Does she have songs she likes to sing along with and can you then bring a recording you can both sing along to i tried a few times to focus on doing something while i was laying in bed fatigued and i would later wake to find my body had moved position the same way and while I couldn’t always consciously repeat it i would find something new i could move which was something new to work with. So maybe if she can fall asleep with a song she can sing too the brain will continue that practice during sleep and rewire something new to use to communicate.
Narelle says: My Dad had 3 strokes 2014/2015 and has Aphasia and has been an emotional time.
Speech therapy helped but goes to church on Sundays and sings beautifully. We out family photos on the wall, in an album. Repetition is the key. We had to start Dad back at the alphabet and learn to write, speech and sign his name. Dad was a sportsman so we watch cricket, tennis and football. Wears his footy colours. Initially writing words down and repeating them.
With Aphasia patience, listening, don't finish sentences. Dad had physio and OT fantastic support.
Simple pleasures like have a coffee with them or a meal or grandkids visiting.
Don't give up. Stay strong. They get down but you can change that by your mood
Glenis says: Unfortunately I cannot offer any advice regarding aphasia but I know that I really enjoyed getting a professional massage twice a week on my affected side. Massage felt so good and my husband would also regularly massage my arm and fingers.
Music may also help as I enjoyed just listening to my favourite music.
I wish I could offer more suggestions to help.
Sandra says: Keep engaging with her. Communicate with touch and eye contact. Don’t give up. She is there.
