Epilepsy Talk

A Caregiver’s Guide to Survival… | May 29, 2012

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.









  1. I went right to my wife who was/is my caregiver for advice on this topic. She says the thing that helped her lower stress the most, was, “Planning”. If she was going to be away, she had “Plan B”. One of the things she said that would exasperate and stress her the most was me saying “Dont worry about it, I’ll be OK”


    Comment by Charlie — May 29, 2012 @ 6:54 PM

  2. Charlie,
    Imagine ALWAYS being there, to GIVE CARE FOR THE OTHER”.
    It has to be a daunting task.

    I never knew what kind of heart would it take, to just simply being there to care for the other, EVERY DAY in & out.
    But, thanks to Epilepsy, I’ve come to LEARN, UNDERSTAND, RESPECT, APPRECIATE, ADMIRE & WORSHIP, watching CAREGIVERS giving a whole lot more & ask in return, for nothing more than the well-being of their fellow human being.


    While many of us put aside our CAREGIVERS PRECIOUS contribution to our well-being, reading ARTICLES like this one, remind us how lucky we are to have caregivers, every day sticking their neck out for our well-being.

    See “John Q”, a very heart-wrenching real-life story made for movie by Director Nick Cassavetes, who experienced PERSONAL & FAMILY real-life dilemma with his daughter’s congenital heart disease.

    Sometimes CARE-GIVING can get so desperate, I’ve deep-sympathy when I see caregivers feel cornered & helpless to save their family.

    THANKS & CHEERS TO EVERY CAREGIVERS IN THE WORLD, they made & still make our lives better, everyday.


    Comment by Gerrie — May 29, 2012 @ 8:41 PM

    • I agree wholeheartedly. A Special Thanks to all caregivers!


      Comment by Charlie — May 29, 2012 @ 10:03 PM

      • Quite simply, where would those in need be without caretakers. Nurses’ aides? A nursing home? Nightmare.

        When my cousin found out he was going to have his second leg cut off, he told his wife (one of the most wonderful people in the world), that he couldn’t go home like this. And he wouldn’t, couldn’t live in a nursing home.

        Fortunately, or unfortunately, that decision was made for him. He died several days after having his second leg removed.


        Comment by Phylis Feiner Johnson — May 30, 2012 @ 9:55 AM

  3. We are grandparents raising our 12 year old autistic grandson who has epilepsy and numerous other health issues. The mother has not seen him in 5 yrs and father does not help either. My other two children do not help us out much even if we ask. We do have home health aides for 4 hours a night and two over nights. It is not enough. The grandson does not sleep, so we average 3 hours of sleep a night. The insurance will not approve more hours. We are exhusted. We have not extra monies to hire anyone. Any suggestions?


    Comment by Rose Marie Thees — May 30, 2012 @ 11:44 AM

  4. You might try The Caring Bridge http://supportplanner.caringbridge.org/

    The National Volunteer Caregiving Network



    Autism Organizations — A Listing of Autism Foundations, Organizations, and Treatment Centers

    The Autism Society — to find autism services in your state

    Best of luck to you!


    Comment by Phylis Feiner Johnson — May 30, 2012 @ 12:59 PM

  5. The death sentence

    Nothing worse then to hear the doc say your father only has 6 months to live. The worst part was that he was right. After 6 months he passed away. My mom was a saint to him, saw him through those 6 months, never once did she complain. It was horrible near the end. I wish i could of helped more. By the end of the 6 months, dad was nothing more then skin and bones. Nothing worse then to see a loved one pass from this life to the next. Nothing more saintly then to be a caregiver, the hard work and emotional stress that it brings, one has to be a saint to endure all that.


    Comment by Zolt — May 31, 2012 @ 6:53 PM

    • And even though you know it’s going to end, the final reality still hurts so much. No matter how much you’ve “prepared” yourself, there’s nothing quite like death itself.

      You think you’ve grieved through the dying process, but there’s still more mouring to come.


      Comment by Phylis Feiner Johnson — May 31, 2012 @ 7:05 PM

  6. Yesterday I wrote an article on my blog – “Who Cares About The Carer”. This inspired a friend to write a poem about the subject, and one of her friends posted this link in a response. With your permission I would like to print this out for my husband.


    Comment by Missus Tribble — June 5, 2012 @ 5:24 AM

  7. I have found out a lot about caregiver’s since I was wrongly diagnosed with Alzheimer’s. My neurologist did the tests wrong. He did not do a contrast MRI.

    When I was in the hospital, for seizures, my doctor did a MRI with contrast. It was the longest MRI that I have ever had. He even did one the next day. I have MCI (mild cognitive impairment.) That is no where near AD.

    I had a hard time finding a support group that wanted AD patients. I was finally directed to one. It is:
    DASN@yahoogroups.com They accept family members.

    The other support groups only were for caregivers. I know that caregivers go through a rough time. My son and husband did.

    I also learned that most caregiver’s want to keep the person “in the closet.” I came out in the open and told everyone. I feel that people need to be educated, just like they needed to be when I was diagnosed with epilepsy.

    Other family members are cruel, in my opinion, because they do not help the caregiver. A lot of them can help out, but will not.


    Comment by Ruth Brown — June 23, 2012 @ 2:06 PM

  8. Hi Ruth,

    Good to hear from you and glad to hear the GOOD news.

    If you have a Facebook page, you should post your story for all the world to hear! It’s a very important one.


    Comment by Phylis Feiner Johnson — June 23, 2012 @ 4:54 PM

  9. Hi Phylis,

    I no longer go to Facebook. I have not in a year or so. For the most part, I have been off of the internet. I do not want the world to know. They are still in the dark ages. That is why caregiver’s suffer so much. People forget about the patients and do not want to hear from them. I have learned all of this by living as a supposed patient for over a year.

    I was put in the patient’s shoes. I walked the mile in their shoes. Nobody wanted to help me, except my hybby and son and the people who understand at the Kingdom Hall. I also saw what was happening to the caregiver’s. They are really going through a rough time.

    I have been helping out a caregiver by email. He has asked me for advice. I give him the best support that I am able to. He told me today that he is grateful for the help that I have given him. I give him practical advice.

    He gets a break when his wife goes to the gym to keep from getting muscle atrophy. It helps both of them. He loves his wife a lot.

    My father-in-law died of AD. Our whole family helped out. My hubby’s family has always stuck together and still do.


    Comment by Ruth Brown — June 23, 2012 @ 7:28 PM

  10. Your feelings are understandable…and the circumstances are sad. I’m so sorry you didn’t get the support you and your husband (and son) needed.

    And yes, it must have been quite an eye-opener to be on the patient side and see the attitudes, indifference and lack of caring.

    Yet still, you have the genorisity of heart to not be discouraged and help another.

    I applaud you, Ruth.


    Comment by Phylis Feiner Johnson — June 24, 2012 @ 11:43 AM

  11. Thank you Phylis,

    I do not want praise from anyone.

    I was doing what I always feel is right. The applause always goes to Jehovah.


    Comment by Ruth Brown — June 24, 2012 @ 10:13 PM

  12. […] at https://epilepsytalk.com/2012/05/29/a-caregivers-guide-to-survival/) Share this:TwitterFacebookLinkedInLike this:LikeBe the first to like […]


    Pingback by A Caregiver’s Guide to Survival… « epilepsyconnection — July 20, 2012 @ 10:26 AM

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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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