Control

The Lack of Control with Aphasia

Aphasia brings with it a lack of control. There are steps you can take to treat aphasia, whether it occurs due to a stroke or brain injury or comes as part of a primary progressive aphasia diagnosis. But your brain’s response to the hard work of speech therapy is somewhat out of your hands.

That lack of control is something both Beau Biden and Joe Biden grapple with in Joe Biden’s book, Promise Me, Dad, which is the latest installment of our online book club. We are focusing solely on the parts of the book that cover aphasia and caregiving.

Putting a Name to It

While Beau is cognizant that everything is not fine, he carries himself as if everything is in his control. This is apparent even in his response to his diagnosis. Rather than focus on the lack of control, he feels empowered to have something to do.

On page 24, Biden records his son’s response to his brain tumour:

When Beau first saw the scans that showed a lesion on his brain, in the summer of 2013, part of his reaction was relief: he finally had an explanation for what had been happening to him.

His sense of relief comes from having a clear understanding of what is causing his aphasia. If he can name it, he can treat it.

Handling Other Things

Beau and Joe both respond by throwing them into their work, something they can control in the chaotic space of navigating a brain tumour and its accompanying problems, including aphasia. Both attempt to handle other difficult things because they can’t make a dent in what they really want to control: Beau’s health and well-being.

On page 82, Biden writes,

[Beau] had no real control over what the disease or the treatment was doing to his body; no real control over his blood work; no real control over what his scans looked like every two months; no real control over when and how aggressively his tumor might begin to grow again. What he could control, he did. He kept doing his job as attorney general of Delaware, and doing it well.

Even a job such as attorney general feels small and doable when facing something as vast and uncontrollable as a health crisis.

Keeping Busy

Joe, as the caregiver, also feels frustration and throws himself into work. He uses his schedule to prove to the universe that everything is fine. On page 84, he admits that he uses work as an escape.

Steve had also come to believe that part of my insistence on keeping up with the demands of my job was a desire to prove to Beau and Hunt and Ashley that I was fine. That I was still capable of handling anything and everything that was asked of me.

Having power over one aspect of life — such as work — can be empowering when power is removed from other facets. Though Biden would much prefer to have control over his son’s health.

Do you ever struggle with the lack of control inherent in treating aphasia?

Image: Greg Rakozy via Unsplash

Comments

6 Comments

  • Anonymous
    April 25, 2018 at 9:28 am

    Good morning,
    My name is Laetitia and my Husbands name is Enda. We are Irish and live in Dublin. Enda was diagnosed with Primary Progressive Aphasia several months ago. The Hospital is excellent and he is getting speech and language therapy. He is also involved in a study of exercise which is run by the memory clinic in St Jamses’s Hospital Dublin. I was trying to learn more about his condition and I came across you site. I joined your mailing list and I find your newsletter very good. I hope you don’t mind that I took the liberty of doing of joining. Enda has memory loss also . It must be very hard for all trying to accept what is happening. In Ireland there is no charge for treatment and it’s of such high standard. One can go private to consultants which we did to begin with. Thank you for sending me your newsletter it is a great help.
    Sincerely,
    Laetitia O’ Regan.

  • Joel Coleman
    April 25, 2018 at 3:27 pm

    It’s hard treading…. and navigating the swells emotions that coming out of nowhere…. People think that controlling them is easy. Take from me is the hardest thing to deal with other than fight your urges to think about for former self. I battle with myself every waking moment to able to mimic my own self and it hard to know that you will never be that whole again… That’s problematic part of having a Stroke that your caregivers will never able to tap into. The helpness part of equation. It’s easy for them say something different because thay can take a break from the daily grind.. The Stroke Survivor ever will able to do that from now on til your dying breath you will never get a break because that your NEW Normal….

  • Anonymous
    April 25, 2018 at 4:25 pm

    My dad suffers from aphasia after brain surgery and multiple strokes during the surgery. He is 86 years old. He will struggle to speak daily. Yet with his struggles, he will never give up. He also knows that what he is saying is not correct. When he speaks to strangers or neighbors, he can say very well, “I can’t talk.” most times this is enough for people to be understanding and empathetic. It’s been 1 and 1/2 years and dad is still trying to communicate. It has gotten to the point where people who know him are able to communicate with him very well. Many times it’s listening and helping with the words – which he doesn’t mind. Sometimes, once you pick up on a few key words, you are able to know exactly what he wants or needs. His surgery also left him with the inability to write, so vocal communication is our only means to communicate. We show our dad love, support and patience with every word and every day. I believe that someday soon, there will be a medication or simple cure–and dad will be first in line. He is a Marine. He is a great American.
    He is my dad!

  • Kathleen Babiasz
    April 25, 2018 at 11:07 pm

    I also work and work out,water aerobics and run/walking with my dogs to try to handle the stress.

  • Sheila Christian Janssen
    April 26, 2018 at 10:23 am

    My daughter is 34 had a horrible accident 7-27-2014 she went over a 70 ft embankment and ejected 40 ft out the drivers Dr. She has Traumatic brain injury after 6 weeks she’s was in a acute rehab doing well in Roanoke Va. She couldn’t use her Rt side due to the most damage. She could use her left with lots of therapy. She amazed me. She did say Mom Hi and Bye. She could wave sign I love You or thumbs up. She was even using a iPad with speech therapy and saying yes and no and some other apps. She could pick up objects and sort cards by color. She could push herself up with her left arm and they had her up walking. Then insurance said she wasn’t going fast enough and sent her to a nursing home. Medicaid in Va didn’t pay for therapy in a nursing home so my daughter contracted in less than a year. She stopped talking communication because her arm contracted also. Plus at a nursing home not much contact. They come in your room a couple of days. She got bedsores and still does and go every day. It’s been almost 4 years now they can do therapy but it’s too late for her left leg. She will never walk. I had to fight with speech to work with her. She communicate with me with her eyes or is playful and turns her head when I try to kiss her. They do no activities for her. I am the only one that works with her. There are no brain injury centers close. I reached out to brain injury services and they banned them from the building. I tryed to get her in a better nursing home to find out they no no because they have got burned on patients with bad behaviors even though she doesn’t. She can’t talk and is at their mercy. Even though I go in every day I still find her not being turned or cleaned and she knows what is going on. She’s getting Botox in her left arm I’m fighting to save it for her to communicate or have a power wheelchair one day. I didn’t send her just to die. I want her to live the best life she can. With my health I just can’t handle her at home. It kills me to see her treated this way. I wrote Congress. I write letters to the nursing home. I want her to be able to talk to ask for what she needs I’m case something happens to me. Her name is Amber Weaver my only child my baby girl I don’t know how else to get her help. So if there is anything else I can do please share. Sheila Janssen

  • Anonymous
    April 26, 2018 at 7:30 pm

    Laetitia, should meet my wife. She must also put up with a husband suffering from PPA. That’s me,Terry. Ten years into this I no longer speak. I still read and write but very slowly. Most people believe that my slow language skills indicate a deteriorating intellect. This is what hurts me the most about PPA. Opinions based on no knowledge! Keep learning and never give up hope.

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