Marriage and TBI Part IV – Assistive Technology to Attain Independence

Posted by Ginger Bristow Gaitor

January 24, 2011

 

Assistive Technology to attain independence

I hope the information I am providing in this article will be meaningful and helpful to a family or traumatic brain injury survivor with some similar issues as Bill. I remember that when this journey began five years ago, I had a difficult time finding information and direction. We have been able to learn about Assistive Technology and incorporate it into our daily lives.

This week was particularly stressful for us.  Since Bill’s Respiratory Failure and Pneumonia, following a seizure, he is seeing a throat specialist and speech pathologist to deal with some swallowing problems caused by mucous building up between his vegus nerve and his left vocal cord which has become paralyzed. This could be causing his choking and possible aspiration. This is all new for us.

It will mean some changes in program and services, since he cannot have home health nurse come and receive outpatient services at the same time.  We may lose our nursing care that I depend on so much to physically check him out and pour his medication. 

We are trying to get Bill as independent as possible.

Due to Bill’s short term memory and inability to read, I handle the medications. But when my thyroid was removed, it affected my parathyroid causing calcium level problems in my body and memory issues of my own.  Bill felt that I had more than enough to handle and requested his service coordinator provide a nurse through his TBI program to pour the medications. 

We were able to order an electronic pill dispenser, which once set automatically rotates to the next medication dose.  There are still some problems with this, since it will rotate to the next level automatically, if he sleeps through a dose, he might miss the previous medications.  Most often, it works well as he is not alone often, and usually I handle the medication if timing is an issue.

This system is working well for Bill and he is comfortable knowing approximate times when he takes his medications.  He tries to count how many there are but would not be able to tell what they are.  Baby steps. 

Telephone Use and Numbers

After a year of intensive cognitive work and trying to bring back Bill’s ability to read, we decided to keep working but also to try some things that would add more independence to his life. Since he could not remember phone numbers, or dial 7 – 11 numbers at once, I contacted our phone company for some assistance. 

We were able to obtain a push button phone, which is pre-programmed with numbers. He has photos on several buttons, and knows the location of other important people on his list. He can call me if I am out and he wakes from a nap and I am not here. We have a “cue” since he cannot read a note that says, Gone to the store, call me.  This is a pink sticky note in the shape of a heart that is taped to the phone when I go out without telling him first.  He has managed to remember this pretty well and usually calls.

When he wants to call a member of his family he can do so by pressing their picture without assistance from me or anyone else.  That is a major plus for him.  Some of his team has been added recently and his Dr. and 911 of course are on there.  It is a slow process, but a positive one I recommend if you need it.  Bill has recently loss the hearing in one of his ears, and this phone also has a volume control for the hard of hearing.  At this time, Bill is unable to manage the several steps it takes to use a cell phone, but it is still on our list to investigate. It may work well for your loved one.

Seizure Disorders concerns

This picture is of a high powered magnet that Bill uses to swipe is Vegus Nerve Stimulator, a device that was implanted into his chest, with wires that stimulate the nerve and serve as a pacemaker for his brain. That is the easier way for me to explain it. 

If your spouse is having seizures that are not being controlled by medication, you can ask your neurologist or neurosurgeon about this.  The first one failed, electronically and had to be completely replaced last year. This is the last one he will receive due to the size of the nerve where the wires are wrapped.  This is part of the reason for the swallowing problem as I understand it.  This device may be controlling Bill’s seizures that had been causing monthly hospital stays.

Are You Safe When I Leave You Alone?

I know this is a huge question in the mind of caregivers and those who have elderly parents who live alone.  Bill has something called a Link to Life, and he wears a button on his wrist that he can push if he gets confused, if he has a seizure and I am not at home. If he is unable to walk to reach the phone he can just push the button. The problem is that he is unaware that he needs to push the button during a seizure. We have watched him shake his head no at the idea of calling the doctor or 911 enough times to know that it is essential we find other alternatives.

A neighbor heard a talk at the local senior center and was kind enough to bring me a brochure on a new device he will wear around his neck that will call the assistance center automatically in the event that he falls.  He almost fell yesterday, and I was in the kitchen.  We will receive this device soon, and I am happy to say I will be more relieved when I leave him by himself. One of the restrictions for this device is that you must have a land-line that is not sponsored by cable.  That will hold some people back.

Bill does not have dementia or Alzheimer’s, but when his brain reaches fatigue, he can become quite confused. Each of these devices enable him to both feel and be more independent.  I urge you to look into any of them that will help keep your loved one safe.

10 responses to “Marriage and TBI Part IV – Assistive Technology to Attain Independence”

  1. Janet Cromer says:

    Thanks for the very helpful information, Ginger. Often, we caregivers don’t even know to ask for specialized equipment if we’ve never known anyone who uses it. Your photos will keep these devices in mind.

  2. You did a great job in getting all of these assistive devices together for use in your home. Good research on your part there and a friendly neighbour to help.

  3. Lenore says:

    Thanks, Ginger, this is beautifully written – a lot of information in a short article. Every caregiver should read this, and so should those of us who will someday be caregivers. I think that means all caring people.

  4. Cathy says:

    Oh yeah, I LOVE the big button phone with pictures:)

  5. Cathy says:

    Great job recognizing the needs for Bill and yourself. Great job to you both, for working on the things that can help Bill improve towards independence and for NOT giving up. I know the things you share help those who may be going through the same thing, but who may not recognize all they could do or maybe they just feel they are alone. Whether it being one who cares for an aging parent or someone disabled, your articles show they are not alone and there’s always help one way or another. Often in prayer. They are always coming up with new things and I hope people have access to what they need. God bless to all caregivers and to all those being cared for!

  6. Felecia says:

    I concur with Jan about the needful gadgets on the market. My mother could have used a phone with pictures. She too had a seizure disorder.

  7. Pete says:

    Long month, indeed Ginger. Gosd bless you and Bill. Hang in there.

  8. Jan says:

    Wow, I had no idea there were all these helpful “gadgets” out there. I’m sure other caregivers will find this informative article helpful. For those of us who don’t currently have need of them, are glad to know about them should we need them for ourselves or loved ones in the future.

  9. Faye says:

    I think you’re doing other people with yours and Bill’s issues a world of good by sharing all this vital information that you’ve gained “the hard way,” making it easier for others to use.

    As always, I can’t say enough good stuff about you!!

  10. Tess says:

    This is an amazing amount of information! Thank you for adding photos of each item, as it helps greatly in picturing what the device actually looks like. You are a tremendous resource and I know from having emailed you how willing you are share what you know, as well as offer support to those who need it. Great article!

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