How to cope with mom's limitations?
This issue has been getting worse since August Mom had a stroke in July. She has aphasia as a result. Mulpitple types of aphasia. She can read, but I think her comprehension is poor. She cannot write. She cannot speak. She makes mostly word salad, but when she does get a real word out it is the wrong word .... and you cannot help her..then she will just repeat what you say. Trying to understand just one single sentence take 30-60 minutes of intensive effort on my part. I just cannot do it. A couple hours of that per day I am completely exhausted. She has been going to speech therapy a couple times a week since August..... She is not improving. They have shown her a couple of techniques to help....using rhythm to tap out the words on her leg. Using singing to sing the words, slowing down and put just one word at a time out, using a computer tablet to cue the words. She just will not do any of that. She waves the idea away whenever I try to get her to do any of it. She is increasingly upset about her isolation...I think she believes it is all because I will not intensely focus on her 10 hours a day...or even 1 hour continuously. It is just too exhausting and she will not put out the effort herself. Maybe she believes everyone else is required to put out effort? She wants a support group that she can talk with who share her experience. Yet, the only group (really..in this small town there is one group) cannot understand her and they each have their own problems...a couple hours a week of focusing solely on my mom is not realistic. I tried to make her understand that two people with profound aphasia would only be able to hold this kind of conversation....."A dadduuudm. Difnghfj hhh. Bububub?" " Dadum whupt ehodod." Leaving both frustrated. Either she doesn't understand what I am saying...or she doesn't believe it. So..I have a problem. I have to figure out how to cope with her. She wanted a lingraphica speech device. $7,000. She will not use it. She wanted an iPad. $1,000 she cannot understand how to use it...I and others have spent hours trying to show her how these devices work....but, within a few minutes afterward...she doesn't know how to use them...or she doesn't want to (who can tell?). Now she wants an iPod to download and play music. Really? How in the world will she be able to ever use it? I don't understand these...friend tried to show me, and I don't get it....just imagine Mom with this device! And..you know it will be my fault if I don't read her mind and get the music she wants loaded onto it. Ah geez. She does tend to forget things...but only for a day or two, then she remembers ...sort of. Sometimes the memory is distorted too. I have no idea how to proceed forward with her. She is a sweet wonderful woman....but her frustration is growing...and she shows no indication of accepting that this is her limitation and she is the main reason there is no way around it. Ok. I don't know if anyone has this kind of issue...but any advice is welcome!
Like globa aphasia, she can only produce few recognizable words...and often the wrong word anyway.
Like anomie...she doesn't understand speech well (maybe very little)...basic instructions seem to confuse her. Her reading is doubtful. But low comprehension in any case. She cannot write at all
I've read other posts here that tell of how their sweet parents are so grateful of the loving care they receive, even if they could only convey it with a smile or brightening of their eyes. Working with someone who can't - or won't - show gratitude, love and affection can sap your spirit, like a slowly leaking tire you may not notice until totally flat.
It sounds like you have done so much to work with your mom and support her. It must be so frustrating. I'm going to PM you a link, though, it may be that you have already given most of the things it suggest a try.
Strokes can bring depression, fear and feelings of helplessness. They often occurs suddenly to people who were previously functional and independent and unlike a disabling accident there seems to be no hope of getting better, only the prospect of needing care for the rest of their lives. They can also bring on dementia which means a person looses control of their thought processes,the ability to reason, follow commands and general lack of comprehension.
You feel you can not continue to provide this care and I will say others have it far worse than you. That is not a helpful comment and was not meant to be but everyones limits are unique and you seem to have reached yours.
So get out of the kitchen something is about to catch fire. Are there other family members who can take over. Have you considered AL or nursing home. Mom will probably refuse, so don't present it as a choice just tell her the day she is about to leave. it is not her fault nor is it your fault but this is something you personally can't deal with. Mom is unhappy, probably depressed and frustrated. you have reached the end of your rope so do something about changing the situation. Mom clearly can't or won't help herself. Not a case for tough love.
I will get a sentence like "maky maky do you wak no hum hum?" 30 minutes later I mind learn she was trying to tell me something about my deceased Dad. She is a master of the non sequitur. So you never know the topic...and she cannot tell you. It could take an hour or more just to learn the topic...only to find out that what she is trying to say has no relevance to anything at all.
When I talk to her...it is simple words. Immediately relevant, and she can see what I mean because I show her and tell her.
Finally...I have seen what the reality of a nursing home is...Mom will never enter one so long as I live.
My cousin's verbal skills are declining, but, she has been able to say words that don't always make any sense. The words are jumbled, mixed up, but I just go along with her. I will say things like, well, that's the best way to look at it. Or, I love your attitude. You are so positive. Or, Let's pick that topic up again tomorrow. Or, tell me more about that. My response is positive to her. She thinks I understand and she smiles and agrees with me. How do you think she might respond if you try something similar?
I do not believe her intellect has been damaged....so, treating her like an incoherent baby is a mistake and might make her mad....certainly made her very insistent I put in the exhaustive effort to figure out what she was trying to say. Honestly.... ignoring her works better. Once I reach exhaustion each day, that is the tack I use.....but it is making her feel, more isolated.