Epilepsy Talk

A Caregiver’s Guide to Survival… | September 18, 2019

It’s called “burn out.”

Because, let’s face it, being a caregiver is exhausting.

You may feel guilt, resentment, anger, anxiety or helplessness.

You may have to give up your income and career prospects to care for someone.

Even if you love the person very deeply, it can feel as though the focus is always on them and your needs and wishes go unnoticed.

Often you deal with the situation alone and feel very isolated. (My mother-in-law didn’t leave the house for two years when my father-in-law was dying.)

But you can’t do anything to help another person if you’re a basket case yourself.

To be the best caregiver possible, you need to be physically and emotionally well, yourself.

After all, how effective can you be…

If you’re run down, tiring more than usual, will you be able to provide good care?

If you have a cold or the flu, will your loved one catch it from you?

If you are not well, who will fill your shoes, whether temporarily or permanently?

If you become depressed, will you be able to make good decisions, or will life become unbearable?

It’s important to remember to create a balance between caring for others and caring for yourself.

But how? Here are a few simple (and probably obvious) suggestions:

Eat regularly. The same goes for sleep.

Get exercise — make it a priority for both your mental and physical well-being.

Get regular check-ups and don’t ignore possible symptoms of ill health.

Take a break — down time is crucial.

Join a support group for family members — learn how other people cope.

Here are some suggestions you may be hesitant to heed, but it’s really in your best interest as a caregiver…

Let others help — don’t be a martyr. Honestly, you don’t have to do everything all of the time.

Ask others to pitch in with things like driving your loved one to hospital treatments so you can have a little down time. (My uncle and his neighbors took turns driving their friend to appointments.)

Take time for you. Schedule another friend or relative to spend time with your loved one each week. It will cheer both of them up and make them feel better.

Don’t be afraid to ask for a home health aide or a visiting nurse when you need one.

Now, on the other side of the coin…

5 Quick Tips on How You Can Help a Caregiver

1. Ask what the caregiver needs help with — not what you think she may need help with. You may have the best idea since the invention of the iPhone, but if it doesn’t work for the caregiver or their loved one, then it’s not a good idea!

2. Visit the patient. Play a game of cards, read to them, tell funny stories, or just chat. An hour visit can free up the caregiver to run errands, have their hair cut, or have a quick visit with a friend, without guilt or worry. A visit doesn’t have to last all day (and, in a lot cases, that may not be welcome anyway).

3. Offer to go to the grocery store or bring over dinner. It’s like manna from heaven to eat someone else’s cooking or have the tedious job of grocery shopping done for them. Put it casually, like “I’m going to the grocery store, do you need anything?” (Don’t forget to slip in a goodie or two in the bag!) Or, “I’ve made a huge lasagna, want some?” It’s a casual way to help…and offer some relief.

4. Learn about the condition. If the caregiver is dealing with a loved one who has Alzheimer’s, learn as much as you can about it. Ask questions. The caregiver will appreciate talking with someone who knows what they are dealing with on a daily basis.

5. Be a friend. There is a high rate of depression among caregivers which may lead them to withdraw from friends and family when they feel overwhelmed. Call to see how the caregiver is doing. Visit with them but don’t be super sensitive if the visit is cut short. After all, their time is often not their own — they’re busy taking care of someone who is either sick or disabled. Yet, they need you now more than ever!

Being a caregiver is a 36-hour-a-day job. Sometimes without sleep…or forgetting meals…letting your health take a back seat…or suppressing all the tears and fears.

Take good care of yourself and let others help take care of you.

Because the best present you can give your loved one is your own good health.

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  1. From my personal experience, watching my family & friends dropping everything aside to stand by my hospital bed everytime I got struck with another seizure yet again, thanks to epilepsy I’ve learned the hard way that it takes invincible love & formidable willpower to stay strong & keep caring for your loving family member going through the tormenting experience of medical hardships & adversity.
    Thank you for the inspiring article recognizing, empowering & encouraging the unsung heroes of our daily life.

    Liked by 1 person

    Comment by BahreNegash Eritrea — September 19, 2019 @ 12:57 AM

  2. I think you have probably “earned” such devotion in others’ hearts, Gerrie.


    Comment by Phylis Feiner Johnson — September 19, 2019 @ 10:37 AM

    • Thank you Phylis, I hope I did earn it.
      Thanks God for the caregivers, it’s just overwhelming to note the toll of what it takes to be cared for.

      Liked by 1 person

      Comment by BahreNegash Eritrea — September 20, 2019 @ 7:39 PM

  3. If you’re a caregiver and need support, contact the Area Agency on Aging in your area and ask to speak to someone in their Caregiver Support program. They can arrange respite services for you at no cost.

    Liked by 1 person

    Comment by Tom Waltz — September 20, 2019 @ 3:42 AM

  4. That’s helpful to know.

    Thanks, Tom.


    Comment by Phylis Feiner Johnson — September 20, 2019 @ 11:11 AM

  5. Take time to grieve your losses.

    Liked by 1 person

    Comment by HoDo — September 23, 2019 @ 2:11 PM

  6. Oh HoDo, how true. 😦


    Comment by Phylis Feiner Johnson — September 23, 2019 @ 2:38 PM

  7. THANK YOU PHYLIS!! Sometimes even we “as epileptics” don’t know what or how to help and love or show the people we live that we are very thank for them as well. Sometimes there’s no way to able to know how to to do that. 😘

    Liked by 1 person

    Comment by Kathy S.B — October 10, 2019 @ 3:57 AM

  8. Caregivers lose themselves–I did! It is a confused depression, an angry daze . . . Three months after his death, I am just beginning to get in touch with what I need and indeed, who I am. I am just realizing how isolated I have been, and I now have the beginnings of interest in social experiences. It was so hard!

    Liked by 1 person

    Comment by Chris Keller — March 10, 2020 @ 9:09 PM

  9. Yeah and how the roles can reverse, to which I am not complaining. My mom who will be 91 in 25 more days, on the 25th she will be getting a WATCHMAN device for her heart, as since NOV 2021 & starting this XCOPRI, I have really just had maybe 5 or 6 seizure symptoms like a seizure is going to happen, but did not, & have had 0 seizures for almost 9 months 1 week away. So now my moms health is getting on the danger side you may say, with all the 7 conditions that she has, as I am so glad that after 61 years that maybe she has seen me in my last seizure that I had back on 11-9-21. Still I am still well aware of all those seizure symptoms that can happen, and as I am typing that the BOSTON tune of DON’T LOOK BACK comes on this YOU TUBE I am playing. So my mom needs me now more than I ever had needed her, which she could never do anything in her power to stop a seizure, as she said more than a few times how powerless she felt seeing how the worst was getting ready to happen. But with my mom, FLUID INCREASE, LOW HEMOGLOBIN, HIGH BP, and some other things she can have happen, I never know which 1 it is as the reactions she has is all but the same feeling tired all the time. Guess having a variety of what is happening, is better than knowing that the same old thing is happening for over 61 years, when you are almost 91. All I want is PEACE OF MIND that is coming on now. Let the rapture of Jesus Christ happen now. Then all who believe in him, will never need to suffer no longer.

    Liked by 1 person

    Comment by James D — August 1, 2022 @ 4:06 PM

    • It seems as if in a cruel twist of fate, the tables have turned. But weren’t you always taking care of one another in your hearts and with your faith?


      Comment by Phylis Feiner Johnson — August 1, 2022 @ 4:19 PM

      • Yes,, and when we had my dad, things seemed to had been more normal when 3 of us were around, and 2 were able to help 1 when 1 was in need. It was harder for my mom these last 17 & 1/2 years to watch me in a seizure, all alone, but she’s prayed more & more, as I have as well to God as I’ll always know he’s got our backs & we are in his hands.

        Liked by 1 person

        Comment by James D — August 1, 2022 @ 9:24 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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