TBI – Survivors, Caregivers, Family, and Friends

Archive for February, 2019

Caregivers SPEAK OUT! Bill Duwe

Caregivers SPEAK OUT!

Bill Duwe  (caregiver for his son)

presented by

Donna O’Donnell Figurski

Bill Duwe Caregiver

Bill Duwe – Caregiver for son, Ray

 

1. What is your name? (last name optional)

Bill Duwe

2. Where do you live? (city and/or state and/or country) Email? (optional)

Broken Arrow, Oklahoma, USA     wduwe@cox.net

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

I am Ray’s father. He was 34 when he suffered a brain-stem contusion in a motor-vehicle accident.

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

Ray was released from the hospital on January 27, 2001. We shared caregiving with his wife until November 2001, when Ray moved to our house. My wife and I have been his main caregivers since November 2001. I was 60 years old.

Bill Duwe Wife & Son Ray IMG_6570 (2)

Bill Duwe and his wife – Caregivers for son, Ray

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No, but my wife’s mother was requiring some assistance. Eventually, we were caring for her and Ray in our home. She passed away in 2007.

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

Yes, I was employed. My employer helped by allowing me to work from home a day or two a week. I worked for 2½ more years. Then it seemed better for me to retire.

7. Did you have any help? If so, what kind and for how long?

Absolutely! Currently, I have eighteen volunteers who help with stretching exercises for Ray. I trained these volunteers. We exercise Ray twice a day on a physical therapy table. For seven of those exercise times each week, a volunteer comes to help. Exercise takes about 45 minutes. Some volunteers come once every week; some, twice a month; and some, once every two months – depending on their availability. This does wonders for everyone’s morale – my wife, Ray, the volunteers, and I are all uplifted in spirit.Volunteers

In addition, I employ a nurse for two hours to bathe, give medicines, help dress, and help exercise Ray twice a week. My wife will have knee-replacement surgery next month, so we will employ this nurse two hours a day, six days a week, during my wife’s recovery. Two of Ray’s children will also come to help us during her recovery.

8.When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

We received ten days of family training on the rehab floor of the hospital before they released Ray. They trained us in physical therapy, occupational therapy, speech therapy, and all daily care. We did most of his care during those ten days.

9.Was your survivor in a coma? If so, what did you do during that time?

Ray was in a deep coma. He did not respond in any way for one month. He partially opened his eyes exactly one month after the injury. We camped in the waiting room day and night. We took turns going home at night for a shower and an occasional night of sleep at home.

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

Ray received inpatient therapy during the ten days of family training. After he was released from the hospital, we were able to get various periods of outpatient or home-health therapy for a few years. We have always been directly involved in any therapy.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

Ray is a non-verbal quadriplegic. He requires complete 24-hour care. Ray’s ability to communicate is very limited. Frequently he can close his eyes for “Yes.” Sometimes he can shake his head for “No.” Occasionally he can smile, but the heavy doses of seizure medications have dulled his ability to show emotion.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

There have been significant adjustments to our daily life. We made major accessibility accommodations. We have a wheelchair-van. We built a custom accessible home. I would not say life is better or worse. We learned how to adapt. We travel extensively – road trips and cruises. We are able to do what we want – it just takes extra planning and effort. We enjoy going to church, eating out, etc. Ray goes with us. Many of Ray’s friends have connected with us. Ray’s children are close to Ray and us.

13. What do you miss the most from pre-brain-injury life?

We very much miss the old Ray.

14. What do you enjoy most in post-brain-injury life?

It has provided opportunities to connect with and appreciate Ray’s friends. We enjoy sharing our experiences with other caregivers and friends we make in our travels and with therapy students.

15. What do you like least about brain injury?

The devastation to the survivor and his family

87747316. Has anything helped you to accept your survivor’s brain injury?

Ray’s demeanor indicates he has accepted his injury. Knowing he accepts it helps us accept it.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Our marriage is strong. Unfortunately, Ray’s marriage did not survive. Ray’s children are close to Ray and ready to help when needed. We may be closer to his children than we would have been otherwise.

18. Has your social life been altered or changed and, if so, how?

We seldom attend church-class parties in a home because it is difficult, or impossible, to get Ray into most homes. Otherwise, we have an active social life. My wife and I each have social activities we attend individually.

19. What are your plans? What do you expect/hope to be doing ten years from now?

In ten years, I will be 87. I expect to still be taking care of Ray in our home. I may need more help, but who knows? My health is good. I expect Ray, my wife, and I will be traveling.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

  • Make the effort to find support, and work to keep support.
  • Take care of yourself and your life.
  • Remember, you know your survivor’s medical history better than any doctor does. Use your knowledge to help the doctor. (For instance, scar tissue in Ray’s lungs may be misinterpreted as pneumonia on an X-ray.)
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“We Still Have Him to Love” by Bill Duwe

 

 

I have written a book, “We Still Have Him to Love” by Bill Duwe. I wrote it to help other caregivers. It is available on Amazon.com.

 

 

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New NEWS: . . . . . . . 2019 Caregiving Visionary Award Finalist

New News:    2019 Caregiving Visionary Award Finalist

presented by

Donna O’Donnell Figurski

th-1YAY! I am one of ten finalists for the 2019 Caregiving Visionary caregiver-word-clipart-1Award, so I’m still in the running. A great big THANK YOU to all who voted for me. Your votes helped immensely. YOU made this happen and I am so honored to be a finalist. Winners will be announced March 1st.

Thank you! Thank you! Thank you! THANK YOU!

 

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TBI Tales . . . . . . . . . . . . . . . A Friend? The Need for Better Understanding of Brain Injury

A Friend?
The Need for Better Understanding of Brain Injury
by
Alan Gregory

presented
by
Donna O’Donnell Figurski

Alan Gregory 1

Alan Gregory Brain Injury Survivor

 

I was working at my minimum-wage, 3- to 4-hours-per-day job when an old friend came in. He asked why I was working there and not at my former job. (I had been an accountant at a large manufacturing firm – a job I held for more than 30 years.) I told him I lost my job after I suffered a traumatic brain injury (TBI).

Of course, my friend didn’t know what a TBI was, so I explained it to him. He then assumed I must have been in a car accident. But, when I explained to him that I had slipped on ice and landed on my head, he rolled his eyes and moved on.

I wanted to grab him and tell him, “Yes, it’s true, and it totally messed up my life!”clipart-of-person-slipping-on-ice-7

I deal with my brain injury every day. I struggle with the fact that I can no longer financially support my family. Some days, I have to force myself to get up, after I have bounced around the house all night with my head not allowing me to sleep. I used to have a great, salaried job, at which I usually worked ten hours per day. Now, I can barely work a total of ten hours in a week. Ugh!

I honestly wonder what my friend’s reaction would have been if I had told him that I had a heart attack or a stroke or even cancer. I am sure that his reaction would have been sympathetic and understanding with an offer of “If I can do anything …”

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A little understanding and compassion go a long way.

Well, I don’t want his sympathy. We have survived these past two years without his help. A simple dose of understanding would have been preferable, rather than the perplexed look, the sudden turn and walk away, or the “Yeah, right” head shake that we survivors of brain injury all too often get from others.

 

 

Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.anim0014-1_e0-1

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SPEAK OUT! NewsBit . . . . . . VOTE for Me! – Caregiver Visionary Award

VOTE for Me! – Caregiver Visionary Award

presented by

Donna O’Donnell Figurski

This is just an itty-bitty, tiny-teeny, itsy-bitsy newsletter because I want to share some exciting news with you.

I have been nominated for the “Caregiver Visionary Award,” which will honor five th-1caregivers who stand out in their caregiver world. Now frankly, I think all caregivers deserve this award, but, alas, only five will be chosen, and I hope I am one of them. David thinks I should be too. He nominated me.

I need your help. Only you can make this happen. Here’s how it works. In order to be chosen as one of the top ten finalists, I need votes. Internet votes! That’s it. Pretty easy. All you have to do is click on the link I posted below.

https://www.caregiving.com/ncc19/cva-donna-odonnell-figurski/

Voting ends at Midnight ET on February 25, 2019. So please HURRY!

Scroll to the end of my nomination.
Click on “Cast your vote.”
Takes you to a new page
Lists all nomineesplease-vote
Mark my name, Donna O’Donnell Figurski.
Click “VOTE!

See, that wasn’t so hard, was it?

On March 1, 2019, the winners will be announced. You’ll probably know right away because you will hear me squealing and jumping for joy. And now, I am going to cross my fingers until March 1st. pco5aerzi

ashdis kjdihio jsh pogwkp d wyqye. Oops! It’s really hard to type with crossed fingers.

Translation : Thank you so much from the bottom of my heart!

P.S. Phew! Thank goodness that’s done. I hate to ask for things!

 

(Clip Art compliments of Bing.)

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Survivors SPEAK OUT! …….. Alan Gregory

Survivors SPEAK OUT! Alan Gregory

presented by

Donna O’Donnell Figurski

 

Alan Gregory 2

Alan Gregory – Brain Injury Survivor

1. What is your name? (last name optional)

Alan Gregory

2. Where do you live? (city and/or state and/or country) Email (optional)

Charlevoix, Michigan, USA     ajgregory@chartermi.net

3. On what date did you have your brain injury? At what age?

January 5, 2016     I was 52 at the time.

4. How did your brain injury occur?

I slipped on ice in our driveway while going to move my wife’s car. I had just gotten home from work on a Friday evening, and I went to get into her car. I stepped on a patch man slips and falls in waterof ice and flew up into the air, landed on my back, and then hit the back of my head on the concrete. I still remember that awful “Crunch” sound.

5. When did you (or someone) first realize you had a problem?

I had suffered a concussion when I was hit in the head by a softball while coaching, so I knew the symptoms and the feeling. My wife is a Registered Nurse, so she knew I had to rest, and she kept checking on me all the time. After a trip to the Emergency Room, I expected the symptoms to go away in a few days or so. The ER doctor said I would be OK in a week at most. I returned to work on Wednesday (four days after the fall happened) because I had so much work to do in my job.

6. What kind of emergency treatment, if any, did you have?

I went to the Emergency Room at the time of my fall. I was released with orders to just rest for a few days and stay in dark, quiet areas. That was my treatment … nothing else.

7. Were you in a coma? If so, how long?

No. I was only knocked out for a second or two.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I did outpatient rehab at New Approaches Center. I had physical therapy, occupational therapy, speech therapy, and cognitive therapy. I was at New Approaches as a patient for almost a year, with visits three times/week.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

I have a balance problem, which is even worse when I “crash.” In the beginning, my crashes would happen randomly, and I would get severe dizziness, nausea, and confusion. Over time, these episodes started to spread apart, and now they hit when I am fatigued or overstimulated – usually 3-4 times/week at least. When I crash, my wife helps me into bed, and I usually nap two to three hours. Sometime, I wake up and feel good to go; sometimes, I am still very listless, and my brain feels like it is operating at about 20% at best.download_image

10. How has your life changed? Is it better? Is it worse?

Ha! Does anyone every answer “No”? Yes – life has changed dramatically! There are lots of adjustments and lots of compromises, but we do what we can do. First of all, I lost my job after 30 years with the same company. What really ticks me off about that is that I worked at home (company laptop) for five months after my traumatic brain injury (TBI). I tried to return to work, but the lights and general office-noise just hit me hard, and twice they found me on the floor throwing up. After that, I was told not to come back until I had a “clean bill of health from a doctor.” Yeah, right! I would work as long as I could on the laptop (30-40 mins at first) and then go lie down in dark and quiet. I would then come back later and try some more work. I was able to keep things going and get my reports out on time. I even helped do the monthly closing for each month, and I got things done in a timely manner. Sometimes I would work until I threw up, rest for a while, and then come back for more. I did everything I could and was assured by Human Resources that my job was safe. I asked about coming back part-time (as my doctor recommended) or even about working with no bright lights or noise, but I was told the company did not do that! So, I hit the 6-month mark from the date of my last work day IN the office (not counting my work at home – since I was told that “no one asked me to do that”), and they put me on disability. I was told I had 6 months from that date and I would be released. I was improving, but at a relatively slow pace. I could come back and try full-time – something every doctor and therapist said was a bad idea. But, if I did that, I lost all disability claims for the future. So, they let me go and dropped my insurance, and that was it.

My life may have changed for the better. I think I am a much more patient and caring person NOW. I stop and think about how people might be feeling and how I can help in some way. I am not stressed-out like I was because of my job … but my family has struggled financially from my losing my job. Life is different. I struggle to move on totally, as I still have a lot of deep-seated issues with people who did not help me at my former employer and with “friends” (at least I thought they were) who have nothing to do with me after my TBI. That is probably the next biggest thing – how people treat me or avoid me. Why? What did I do? You think I like being this way? I wish I could go back to work.

11. What do you miss the most from your pre-brain-injury life?

I miss my pre-TBI energy level … I felt like I could work hard for 9-10 hours in my job and then come home and help around the house. Now, I have to watch what I do and know that I may crash later.

12. What do you enjoy most in your post-brain-injury life?

I like having more time with my family. My get-so-caught-up-in making a living and doing my job meant that life just got away from us sometimes. It has been nice to get to spend more time with my wife and my boys – even though one is now in the Army. I feel like we have a better relationship.

13. What do you like least about your brain injury?

I used to consider myself smart and very good at my job. I was an accountant, and I worked for years to get to where I was. I went to night-school for over ten years to finish up my Bachelor’s Degree, and I was three classes into my Master’s schedule. I had a 3.98 GPA when I fell.1440606034164831363did-you-know-auditors-are-usually-accountants-work-in--809089-hi

14. Has anything helped you to accept your brain injury?

Reading books from people like Amy Zellmer and so many other wonderful people helped me to know that I was not alone. But, joining Facebook groups like Amy’s “TBI Tribe” really helped so much. I get to talk to people, and I always get their suggestions and ideas on things to do. Dr. Glenn Johnson and all the therapists at New Approaches helped me so much.

15. Has your injury affected your home life and relationships and, if so, how?

Of course. My TBI has changed the way my wife and I do things – simple things, like mowing the grass or shoveling snow. I have to watch what I do and be honest with myself on how I feel. I do think the TBI has made me open and easy to talk with.

16. Has your social life been altered or changed and, if so, how?

Yes. We go out with a very small group of friends, and we had to prepare them in case I crash. They have all witnessed it now, and some are very helpful. Some also just kind of back-off. I am 6’2”, and my wife is only 5’2”, so she sometimes needs some help with me.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

thMy wife is my main caregiver. She is amazing, and I would be lost without her love and support. She is my rock. I know the things to do as a caregiver, but I also know how hard it can be.

18. What are your plans? What do you expect/hope to be doing ten years from now?

I take things more as one day, or maybe a few days, at a time now. I am much more flexible, and I do what I can each day. I hope I am still improving and helping others in ten years.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

BE PATIENT, so give yourself time. Learning to live with a TBI takes a while … not days or weeks … but longer. Love each other.

Alan Gregory 3

Alan Gregory – Survivor of Brain Injury

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

My advice is to not take personally the actions of others, but it’s easier said than done. I still feel bad that people whom I called close friends treated me like I had the plague after my fall. But, they just don’t get it. WE do! So, look to people who really understand and get it.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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Caregivers SPEAK OUT! . . . . Malissa Mallett (caregiver for her son)

Caregivers SPEAK OUT!

Malissa Mallett (caregiver for her son)

presented by

Donna O’Donnell Figurski

“Malissa Mallett will be my guest tomorrow (Sunday, February 17) on my radio show (Another Fork in the Road) on the Brain Injury Radio Network. She has been caregiver for her son, who had an anoxic brain injury, since 1997, when he was an infant. Malissa is Program Director for the Brain Injury Alliance of Arizona (BIAAZ). We will discuss caring for her son and the effect of her expertise (opioid use on the brain.) My show broadcasts live at 5:30 PT (blogtalkradio.com/braininjuryradio), or it can be heard as a podcast anytime (https://survivingtraumaticbraininjury.com/category/on-the-air-show-menu/).”

Malissa Mallett

1. What is your name? (last name optional)

Malissa Mallett

2. Where do you live? (city and/or state and/or country) Email? (optional)

Laveen, Arizona, USA     Program@biaaz.org

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

The survivor is my son. He was 2 months old. His brain injury was caused by aspiration, causing him to stop breathing (anoxic brain injury).

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

My care began in April 1997. I was 22 years old. I was my son’s main caregiver then, but I’m not now.

th

Babies get brain injury too

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

I had just returned to work after giving birth. I was not able to continue working, since my son required 24-hour supervision for his heart and lung monitor.

7. Did you have any help? If so, what kind and for how long?

Occasionally. My family, who were trained in CPR, would care for my son to give me a break or a night out.

cartoon-hospital8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

In the hospital

9. Was your survivor in a coma? If so, what did you do during that time?

No

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

No

11. What problems or disabilities of your brain-injury survivor required your care, if any?

This is difficult to answer given my son’s age at the time of his brain injury.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

My life was challenging all throughout my son’s life.

13. What do you miss the most from pre-brain-injury life?

I will never know what could have been.

14. What do you enjoy most in post-brain-injury life?

Does not apply

15. What do you like least about brain injury?

shakilaramanwordpresscom

Learn about brain injury

The lack of understanding in the community

16. Has anything helped you to accept your survivor’s brain injury?

Yes. Education.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Yes, it has. We can discuss this on your radio show. It’s too much to explain here.

18. Has your social life been altered or changed and, if so, how?

Not anymore

19. What are your plans? What do you expect/hope to be doing ten years from now?

I would love for my son to be successful and independent.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

supportTake care of yourself.

Be surrounded by supportive people.

Educate yourself.

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

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