Three weekends ago, I was at the Maryland Sheep and Wool Festival. Two weekends ago, I was at Shepherd's Harvest in Minnesota. I flew back from Shepherd's Harvest not certain whether I would go immediately from the arrival gate to a departure for Seattle; my mother had a stroke just before I left on the Minnesota trip, and we were monitoring the situation closely on a daily basis throughout the family. (Note: There are no direct Minneapolis-to-Seattle flights on United. When checking options, I learned that to get to Seattle as soon as the festival was over I would have had to return to Denver on my regularly scheduled flight and then catch a plane for Washington.)
As it turned out, I went home for four days to do laundry and bills, and to re-pack my suitcase. (During that time, the Hewlett Fire erupted in the mountains nearby, and we all were tracking that as well, taking action and preparing refuge for human friends and animals in the fire's vicinity. It's been way too exciting around here.)
On my mother's 88th birthday, I flew to Seattle to lend a hand as well as I could, and to learn about things like aphasia, as well as apraxia of speech, which Mom's stroke has caused. The ability to communicate, through speech, writing, and other means, plays a normally invisible and absolutely crucial role in every other aspect of living. We didn't mention her birthday to her. Despite my arrival, which got a smile out of her, that day wasn't so great. We gave her the cards a couple of days later, when things were, at least for the moment, looking a bit better.
Aphasia is neurological damage affecting language functions, including speech. Apraxia of speech is a type of speech disorder in which the brain knows what it wants to say yet the muscles can't translate those ideas into forms that other people can understand. It's not muscle weakness. It's like the muscles have lost known skills. The brain knows the ability should be there, and the means of articulation don't cooperate.
It's incredibly frustrating for everyone. Watching Mom attempt to speak is like watching someone in a swimming pool try to capture brightly colored balloons that skid away across the water's surface just as they come within reach.
She can hear and understand what we say, and can nod "yes" or "no" in response to questions. My sister is much better than I am at thinking of questions to ask that will yield useful information. Then again, my sister's full-time work in the public school system involves teaching autistic (and other) kids about movement and dance.
I have an unusual amount of experience with communication issues posed by neurological and psychological challenges. I've dealt with situational muteness. I'm good at thinking of alternative modes of communication. Most of the ideas I could come up with this time didn't work.
Mom can't write. We're not sure about reading, although she enjoyed having me read to her (Erma Bombeck's newspaper columns worked well: good lengths, good topics, and mostly humorous; when she's feeling okay, Mom's sense of humor and of the absurd appears to be intact). My sister read to her the previous week, and my niece, who had flown in to help and left the day I arrived, brought Mom some music.
We're working on how to get more music to Mom. She doesn't seem any more interested in television than I am, yet operating electronic devices that might play music is a bit beyond what she can do. The speech-and-language therapist says Mom is 100 percent accurate in responding to one-stage requests. ("Touch your nose.") Her accuracy drops somewhat when the requests move to two-stage sequences ("Touch your nose and then touch your ear."). I don't recall the percentages exactly, but I think at that level she varies between 70 and 90 percent accuracy. That's not bad for a short time post-stroke, but so far we can't think of a music-playing device that would be familiar to her, and operating a new-to-her option would require her to learn a sequence of actions. Since her energy is limited, we think she would be better off spending it in reinvigorating her how-to-talk skills. But it would be great if she had some music, and could control it. Rehab can be a really boring existence when your non-therapy alternatives are so limited.
In trying to decipher Mom's utterances when she was working on communicating verbally, I was hampered by the amount of noise in most of the spaces where we were located—it's a rehab facility, and in the daytime there's a whole lot going on. Mom's articulation isn't clear and she can't vocalize very loudly. On one day, it was sunny and we went outside into a courtyard and that was delightful. The next day it began raining, a situation that continued for the rest of my visit; the precipitation was good, but the limited access to quiet space was not.
On the occasions where all of us (especially Mom) managed to muster enough patience to slow down and make our way through a whole sentence, Mom was able to convey quite complex ideas. The high point in my week came when I guessed the word "niche" and got a strong affirmative nod from her. "Niche" is a really hard word to speak or interpret!
Right now, it's hard to tell what sorts of recovery the rehab therapies may accomplish. The aphasia and the apraxia of speech are not the only things Mom's dealing with, but they are the core issues. Mom's doing physical therapy, occupational therapy, and speech-and-language therapy. At the evaluation and treatment planning session we all participated in on Monday, the overall opinion was that she may be able to regain nearly all of the independent skills she has currently lost. (I learned that ADLs are activities of daily living, the benchmarks for independence.) But her success will depend on a few things that we can influence, as well as many things over which we have no control at all. It's one day at a time.
And we will do everything we can to support her.
This is why.
It's impossible to tell what will be needed in the family constellation over the next few weeks or months. My sister and brother-in-law are handling the great bulk of details and visits and paperwork, due to their proximity. The rest of us are doing everything we can, either from a distance or by showing up in person.
One day at a time. One step at a time. One word at a time.
Oh Deb, I’m sorry to hear this news but it sounds like she’s making terrific progress. Getting back her ADL is huge. I experienced some aphasia that (luckily) resolved very quickly. I can tell you that knowing the word you want to say but not being able to say it is SO very hard and frustrating. Mix that with not being able to “find” the word you want and it’s all very anxiety making.
You and your family are in my prayers. Wishing your mother a speedy recovery.
Deb,
I’m so sorry to hear about your Mom’s current challenges.
RE: music…have you thought about satellite radio? It’s basically on/off and you can tune it to the genre of music that she would enjoy. And on most stations there is little to no advertising.
Sending you all good wishes and healing energy for these times.
Holding your mom, you, and your family in the light. Big hugs.
Hi Deb,
Thanks for sharing. I have been wondering how things are going. It
is so hard for all of you. Hang in
there. Thinking of you and your mom.
Ay yi yi! If it’s not one thing, It’s another. I second Valerie’s thought’s about satellite radio. You tune it to a station that has music she’d enjoy and just leave it there. She can turn it on when she wants it on, and off when she doesn’t. Volume would be a separate control, but it sounds like the noise levels in her room environment are likely to be pretty constant, and thus setting the volume might just well work. Remember to take time to breathe and take care of you….
Wow, so sorry to hear about your Mom. My MIL LOVED the statellite radio we gave her as a gift. They have channels with music in specific decades and she loved the music of her 20’s. She surprised us all by still knowing the words and singing and humming along.
You might want to consider audio books too. You can get MP3 players pretty cheap (you propably will want speakers or an input into a sound system), or use a PC/Apple computer. Many libraries are using Overdrive.com so you can check out audio books free. I buy audio books via audible.com too, ironically an account I actually bought and set up for my Mom when she was dealing with illness.
Thanks to everyone for your good and helpful comments. I know many of my friends have dealt with problems like this, either personally or at very close quarters!
I love the idea of satellite radio, although I think that will need to wait until after rehab. We’ve been told not to leave anything of value, and I think the receivers qualify (looks like $150-200 for that part, and $13-15/month for service). It’s possible that Mom could manage the on/off switch. The MP3 players (including iPods) are not within reach of her capacities yet.
She does have a roommate, who is very sharp and has been through rehab before and watches TV pretty constantly (from what I can tell, which is a lot, relatively interesting shows {grin}). Fortunately, she’s considerate and turns the volume down when Mom’s in the room. Still, the TV is about 4 feet away from Mom’s bed and there’s only a privacy curtain to temper the sound.
I *do* like the satellite radio idea!
I keep looking at Overdrive.com at our library, but it seems to be focused on PC access; I haven’t been able to get it to work with my Mac. Although I haven’t tried in a year, so it’s probably time to check it out again.
Thank you all.
I have found basic audiocassete players (got one for turning some cassettes I have into digital), would she be familiar with that? Finding tapes to play that she would enjoy would be another issue, but possible I think.
I hope she recovers quickly in all aspects! I occasionally have some difficulty with language from a different medical issue, but it’s not constant and severe, still it’s both scary and frustrating, I can only imagine how much more it would be in your mom’s situation. I’ll keep your family in my thoughts!
Deb, I’m glad to hear that your visit was well received by your mom.
I think the iPod shuffle might be the easiest iPod? I have an older one I could load up with music when she’s ready and you could mail it off to your sister. Being a little bit older it wouldn’t be considered “high value.” I looked at the Apple buy back program and they’d offer $1. It still holds a decent amount of music though. Just let me know.
I’m sorry to hear about your Mom’s stroke. It is a difficult situation at best. I had a stroke in 98-age 47- rehab is slow and even now I have deficits. My dad had a stroke in 2007 and had aphasia and apraxia- those were more difficult for him than the loss of motor skills. One item that helped was a magnetic board with pictures of common ADL items that he could point to when he needed something.
Your mother has such a wonderful smile – I hope all goes well for you and your family.
Hi Deb,
I am thinking of you and your family. My family went through some hard times with my Mother at the end of the year. My heart goes out to you.
Take care,
Kris
Your relating the frustrations of communication to someone trying to capture floating balloons is very accurate. The feeling of helplessness as someone so very strong fights so hard to be understood is very hard to grok unless you have experienced it. My dad had a stroke a number of years ago and although he has not 100% recovered, he did go far beyond where they predicted, and still is gaining even years later. We were told 99% of gains would be in the first year, but that wasn’t true in his case. I think it is because he had and has a habit of learning. Your mom sounds like a similar soul :-}
Soon after he moved from the hospital to rehab I gave him a small book of photographs of time we spent up north as a family. No words, just images of happy memories, and it was small and light enough he could turn the pages himself.
They encouraged music as another way to keep his brain interacting, especially asking if he had a type of music he enjoyed. Since there will likely be visitors with her often, any type of music conveyance will do, she needn’t operate it herself to enjoy some music each day. The nurses also will likely be willing to play it for her.
All my best to you and your family. She raised some strong people, she is likely pretty damned strong herself, eh?
(((((hugs)))))