In the Hapless Wheelchair: Talk To Me When You're Talking To Me!

It was a recent HBO limited series called The Newsroom. Starring Jeff Daniels as Will McAvoy, a cantankerous insomniac and often narcissistic news anchor, he became involved in a scuffle with the producer (Thomas Sadowski) who calls Will a scumbag (not exactly his words--worse even), but the producer addressed Charlie Skinner (Sam Waterston), the news director, instead of Will, and Charlie said, "Talk to him when you're talking to him."


You got all that? It's very important that you do because of the next part of my story. If not, re-read.

So this is what happened yesterday, but it's sort of the same story that happens every time since I had the stroke. Sitting in the wheelchair doesn't help, but for long trips like Walmart or the supermarket, it's a necessity. A man or woman addresses my Personal Assistant, who travels with me because I am disabled and cannot drive. But this crystal clear-thinking woman--me--is ignored. Somehow, I become invisible, a ghost, or I am addressed in the third party.

The woman in Kohl's says, "What is it she's looking for?"

The man in Dollar Tree says, "Does she want red or blue?"

The teenager at the check-out window in Dunkin' Donuts says, "Should I make her tea iced or hot?"

"Hello," I said to myself silently. "I'm right here."

Ultimately, I got tired of the ghost role and this is how I empowered myself to do something. Big time.

I was in the Department of Motor Vehicles to inquire about the status of my identification card, aka my non-driver driver's license, which never arrived in the mail. We went up to the window and, because I was sitting in the wheelchair, my PA, who was eye level with the representative, asked about its whereabouts. The line behind us was extensive.

"I don't know. Let me check. Do you know when she applied?" asked the man.

"Three weeks ago," my PA said.

"Oh. Here it is. There was some quirk in the system and it wasn't sent out. Let me try again. Here's an Oregon certificate of residency [which I didn't have anymore] that should help her out if she's needing it. But she shouldn't. You're her driver, aren't you? And she's not going out of the country," he chuckled.

That was it. The crushing chuckle, bordering on guffaw. With the seemingly endless line in back of us, and with the wheelchair locked, I stood up straight at my full 5', 5", tired of being a ghost any longer. I turned a bit to broadcast the message.

"As a matter of fact, I am going out of the country," I lied and shouted with unabashed glee. "I'm the Goodwill Ambassador for Russian Diplomatic Affairs, appointed by the president himself. I'm leaving Friday," I said, taking the first country that came in my mind a la Trump and the title I made up as I went along, leaving the first 10 people behind me looking with a newfound admiration.

I added, "And by the way, talk to me when you're talking to me."

I sat down in the still-locked wheelchair, looking serious as ever. She unlocked my brakes and we turned and left. I was proud of my exuberant bullshit, even prouder that I advocated for myself. I willing to say that man learned a lesson. But then again, maybe not. Either way, I was overjoyed at my newfound readiness for extemporaneous speech which I didn't have ever after my stroke.

Hey, Hospital Administrators: Be the First to Revolutionize the Healthcare System for Stroke Survivors

I have thoughts, good ones at that, even though I had a hemorrhagic stroke and a portion of my brain cells died, never to appear again. That's all right. I compensate with little tricks that make me able to pretend I have the brain I was born with. 

But just talk, no action has been the status quo with stroke survivors, even though they contribute to one of the most disabling conditions. So I'm going to dare hospitals to do this because no hospital has done it before--revolutionize healthcare for stroke survivors. 

Hospital Administration

Greetings and with all due respect to hospital administrators. You have a difficult job, keeping the balance between doctors and nurses (some of whom are un-balanced) and the rest of the staff running smoothly, or just running. You aren't afraid of suggestions, are you? Well, then, use your smiling (albeit even if you don't feel like it) visages to approach this thought. 

Your facility could be "on the map" even more than it currently is. Be the hospital that stands out from the rest if you follow this one revolutionary suggestion for stroke survivors.


Before I tell you what "it" is, don't tell me you can't afford it because, truth be told, it's the missing piece. Doctors and RNs and the rest of the staff don't need perks, like the spreads you lay out for them, to keep them loyal. Just saving on food alone could make this idea more of a reality. If they really want to help people, and I'm sure most of them do, they'll stay put in your hospital. And your salary more than justifies my proposal. Ready?

When a stroke patient is admitted, have a psych team at the ready as soon as the patient is awake and comprehending, who reads the survivor some strict rules every day for at least a week BEFORE therapy starts. Crying will most likely happen. And that's all right. Emotional release.

Let me give you background on this thought because I've been thinking about it ever since I had my stroke eight and a half years ago. 

I was depressed (it went on for a year, less and less after that) and thus, at times, I was non-compliant. I was in a coma for 8 days and didn't talk for 5 weeks. And that was the easy part. What's the tough part, you ask? From the time I started talking, I would always ask questions at Bacharach Rehabilitation in Pomona, NJ, questions that could have been answered by the not-yet-formed psych team before I started therapy.

Instead, a question to the therapist: "What happens if I don't do leg lifts?" 
An answer from the therapist: "Just do them, ok?"
An answer from the not-yet-formed psych team: "Do everything the therapist says or else you'll be in a wheelchair longer."

A question to the nurse: "Why should I wear support stockings?"
An answer from the nurse: "Because you should."
An answer from the not-yet-formed psych team: "Do everything the nurses say or else you'd delay getting better."

A question to the doctor: "Do I really have to wear the eye patch for double vision?"
An answer from the  doctor: "Didn't you comprehend what I just told you?" 
An answer from the not-yet-formed psych team: "Do everything the doctors tell you because they're trained to give you good advice."

A psych team. For at least a week. Every day. Before therapy starts. To get stroke survivors ready to bust their asses and cooperate with the staff. Who's ready? Anyone? Anyone? Contact me through email and I'll go anywhere in the continental US to make this happen. 

I have thoughts indeed.

Caregivers Should Take Notice; Those They Care For Should Demand More

One never knows when he or she will be a caregiver. I lived in New Jersey for 17 years with my ex-partner. In the 12th year, I got a hemorrhagic stroke and at first, he was my caregiver. Role reversal indeed. But soon it overwhelmed him, not to mention the dangerous risks that I took, falling many times because I craved to be independent. In retrospect, I was selfish and stayed longer than I should have. The relationship was doomed and I understood why. I believe he did, too. And soon, I had to seek other caregivers, for both of our mental states of mind.

I started this blog in 2010 to mentor stroke survivors and, truth be told, to mentor myself, in a cathartic way. By writing about brain trauma, I became a stronger person, and I have my mother and father to thank for that.

Anyway, one day, in 2017, I received this email from Sally:

"My name is Sally and I am writing because as a former Manager of a care home, I learned how demanding and complex caregiving can be. While it can also be rewarding in itself, caregivers need all the help and support they can get.

"Now I work as the Content Manager for a small senior care site and I felt it was important we create a full resource guide for caregivers. It covers 30 essential sources of information and support for all kinds of caregivers."

She went on to say:

"Recently, I came across stroketales.blogspot.com and having read http://stroketales.blogspot.com/2017/02/the-caregivers-are-venting-and-stroke.html, I feel this is a subject you would like to cover."

Indeed I do, Sally. This advice comes from Sally who didn't have a stroke, but she nails it.
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Recovering From Stroke: How Caregivers Can Help

Stroke is by far one of the most devastating and sudden experiences that anyone can endure. Those who experience minor strokes have the challenge of rehabilitation, and some patients who go through major episodes of the medical condition face the horrific possibility of permanently losing vital cognitive and physical abilities. Regardless of the state a patient is in after suffering a stroke, recovery is possible with the help of patient caregivers. Here are three key ways for in-home nursing assistants to help their patients, and themselves, get through the stroke recovery process.

1. Stay Alert

It is probable that you've been given very specific instructions concerning medication. It is essential that they follow all stipulations outlined in their prescriptions to ensure a healthy recovery. Omitting even one regulation or falling behind schedule when administering medication can be detrimental to recuperating and may even be life-threatening.

Another area that requires the devout attention of the caregiver is in physical exercise and general mobility. It is possible and even recommended that stroke patients exercise on a daily basis so as to encourage proper recovery. Try and engage in light physical activity, but also be attentive to falls and injuries. It is quite common for those recovering from stroke to lose their balance while walking. You should not write off such incidents as part of the process, though, as every fall presents the possibility of a serious injury.

2. Encourage Good Nutrition

A person who has experienced a stroke is vulnerable to another attack. You should, therefore, eat meals filled with vitamins and other nutrients during breakfast, lunch, or dinner. It is also important that you encourage those recovering from stroke to eat fruits and vegetables more often than they consume foods with empty calories. Chips, milk chocolate, and soft drinks are enemies to stroke recovery.

3. Engage in Self-Care

Sometimes caregivers are so focused on their patients recovering from life-altering experiences such as stroke that they forget to take care of themselves. Such behavior can be detrimental to both the giver and receiver since stroke patients heavily rely on their nursing assistants for support during recovery. Caregivers can improve and maintain health by:
Keeping up with doctor’s visits
Eating a wide variety of nutritious foods
Taking time away from the job or even seeking professional help if the stress becomes too great

If you are a caregiver, then it is important to do everything within your power to avoid burnout. Remember that your stroke patients need you in good health and are excited about the road that lies ahead of them for rapid recovery.
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Sally's advice, though, is not only for caregivers. It also is for the patients they care for who should demand, to the best of their ability, that their caregivers stay on track.

The 30 essential sources to which Sally alludes were written by Kristen Hicks, exploring subjects helpful to seniors and their families for SeniorAdvisor.com. Click on the link to learn more about it

1. https://www.usa.gov/federal-agencies/administration-on-aging

The Administration on Aging is a government organization specifically devoted to providing programs and services to help aging seniors continue living independently. While the organization is primarily focused on the well being of seniors, it includes an Office of Supporter and Caregiver Services that helps provide funding to families for resources to help with caregiving.

2. Family Caregiver Alliance

The Family Caregiver Alliance is a nonprofit organization that provides services and education programs, as well as doing advocacy work to help encourage government policy that’s helpful to caregivers.

3. Caregiver Action Network

The Caregiver Action Network provides educational resources for caregivers and a forum to connect family caregivers with others dealing with similar issues.

4. Rosalynn Carter Institute for Caregiving

The Rosalynn Carter Institute for Caregiving provides support programs and training resources for caregivers, as well as advocacy to encourage greater institutional help for caregivers.

5. National Respite Network

Sometimes caregivers just need a break. The National Respite Network helps caregivers find respite services that temporarily take over some of the caregiving tasks so family caregivers can take a well-needed break.

     6. Become A Caregiver

If you are looking to become a caregiver anywhere in the United States, look no further than caregivers.com.  They help get families and caregivers in touch quickly and easily and will ensure the family gets the best caregiver they can while matching the caregiver’s skill set to the right family.

     7. Benefits Checkup

Navigating the system of benefits available to seniors is tough, and many seniors leave potential aid or money on the table because they don’t know it’s out there for them. The Benefits Checkup site makes it easier to quickly see what benefits are available in your area that you or your loved one are likely to qualify for.

     8. Family Care Navigator

The support resources available to caregivers vary based on your geographic location. The Family Care Navigator helps you hone in on what programs and organizations are specifically available to you in your state.

     9. National Volunteer Caregiving Network

The National Volunteer Caregiving Network helps connect volunteers that want to help others in their communities with the seniors or people with disabilities that need that help. Volunteers help with things like transportation, errands, and home repairs.

     10. Lotsa Helping Hands

Lotsa Helping Hands is another website that helps connect volunteers with caregivers in their area that need some extra help. Caregivers can put the help they need on the website’s calendar and available volunteers step in to provide help with tasks like meal delivery or rides to appointments.

     11. Eldercare Locator

The Eldercare Locator is a resource provided by the Administration on Aging to help seniors and caregivers find trusted professionals to help with the various services seniors commonly need, like home modifications and legal assistance.

     12. Well Spouse Association

Many senior caregivers are spouses taking care of their partner. The Well Spouse Association helps senior caregivers in this position tap into a larger community of other caregivers taking care of a spouse.

     13. Find Support Groups

Most communities have a number of support groups that caregivers can attend to find others struggling with similar challenges. Often, these support groups are specific to the particular issue your loved one is dealing with, such as cancer or Alzheimer’s support groups. These groups can be an invaluable resource for finding other people who understand what you’re going through and having a healthy outlet for your feelings.

     14. Senior Day Care

Adult day care lets you drop off your senior loved one for the day while you work or run errands and trust that they’ll be in the care of trained staff. Senior day care also gives seniors a chance to socialize and stay busy in a new environment for the day, which many seniors start to need more as they age.

     15. In-home Care

In-home care professionals come to your home for a set number of hours to help out with the care your loved one needs. You can hire in-home care workers to provide basic around-the-house help, or home health care workers to provide health care to your loved one.

     16. Assisted Living

While many families hesitate to take the step of moving a senior loved one to assisted living, sometimes it really is the best choice for everyone. Assisted living facilities have staff available all hours of day to help with the ADLs seniors often need assistance with.

     17. Respite Care

If you don’t want to take a step that feels as permanent as assisted living, but you know you need a break, respite care can take the caregiving duties off your hands for a temporary period.  

     18. Meals on Wheels

A big part of taking care of someone is making sure that they get enough meals each day to stay healthy. For overwhelmed caregivers, that’s not a small task. Meals on Wheels can help fill in with that part of your job in order to take one more thing off your plate.

     19. Independent Transportation Network

Once your loved one can no longer safely drive, getting them out to appointments and social events becomes another difficulty to manage. ITN helps seniors access affordable transportation options that provide the level of help seniors often need.

     20. LongTermCare.gov

LongTermCare.gov is a government website full of educational resources to help people plan for long-term care and understand the options and benefits available to them.

     21. Guide to Veteran’s Long-Term Care

Veterans have even more potential benefits to tap into than most other seniors. If your loved one is a veteran or the spouse of one, this website can help you understand the benefits available to them.

     22. National Institute on Aging’s Alzheimer’s Caregiving Resources

A growing number of people provide care for Alzheimer’s patients, who require a distinct set of skills and knowledge to properly care for. The NIH provides educational materials to help caregivers learn what to do and expect.

     23. Alzheimer’s Association Caregiver Center     

The Alzheimer’s Association is one of the leading authorities on the disease. Their website provides a wealth of information on caring for Alzheimer’s patients based on up-to-date research on the subject.

     24. American Heart Association’s Resources for Caregivers

Heart disease is another common illness seniors face. The American Heart Association provides some educational tips for caregivers helping a loved one with heart disease.

     25. Cancer Caregivers Resources

The American Cancer Society likewise provides resources to loved ones of cancer patients to help provide the main information they need to take care of someone suffering from cancer.

     26. National Parkinson Foundation Caregiver’s Resources

The National Parkinson Foundation provides a number of resources to caregivers of seniors who have Parkinson’s. They also offer a helpline for caregivers that have questions.

     27. Caregiver’s Home Companion

The Caregiver’s Home Companion is a website that includes forums to connect caregivers to one another, and resources that cover many different aspects of caregiving, from the spiritual to the practical.

     28. Next Step in Care

Next Step in Care provides guides for caregivers that help them figure out how to work with health care providers to figure out the next step for their loved one when facing complicated decisions and transition periods.

     29. AARP’s Caregiver Resources

In addition to the many resources they provide for seniors, AARP also provides planning guides and other educational resources for the caregivers that help care for seniors.

     30. Video Caregiving

For those that prefer to learn by video rather than reading, Video Caregiving provides a number of films to help caregivers learn the skills they need.

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And one more thing before I go: not everyone is suited for caregiving. It shouldn't be a source of shame. Wrong job is what it is. Caregiving takes patience, understanding, and compassion for angry, frustrated, and low self-esteem patients who are your clients. If you don't have all three, and it's a family member, find an option in the list. If not, quit. Just because you want to have something to do and make money is not a reason for caregiving. Heed my words. They are spot on.