What do the Caregivers Need?

I’m currently collaborating on a new book. As we were outlining the chapters, we added a chapter addressing the question, What do caregiver’s want and need when living with, caring for, or loving a person with a physical, emotional, mental, or chronic illness? I think it will be a wonderful addition to the book. This group is often left out of the care plan. They are our unsung heroes. The friends, family and support team who, without them, we would flounder.

When I was struck with PTSD  my whole world turned upside down.  As with any illness, it doesn’t just affect me, my illness affects my whole family. My symptoms can be challenging for my family, friends and support team.  They have taken the time to learn about trauma and PTSD and are right there to help me live the most “normal” life I can lead right now. No one, ever, makes me feel like I’m a burden. That’s my own personal demon that I fight and live with on a daily basis.

But what do caregivers need when living with, loving, befriending or working with a person who has a chronic, physical or mental illness?

My husband loves it when I go out of town for a few days. He has respite. People ask why don’t we travel together? Well, really, he needs a break. When I’m gone his worries are less. He deserves all the pizza, late night t.v., just hanging out, no worry days he can get. It’s what he needs so he can recharge. He doesn’t ask me to go out of town, but when a situation arises and he feels comfortable with my traveling companion, he encourages me to go. It’s just a couple of times a year, we stay in contact every day, and he’s thrilled when I come back home,  but he needs that respite.

He also belongs to an online support group for caregivers of someone with PTSD. At first, I will admit, I was fearful that he was talking to other caregivers. I soon realized that it was my own immense guilt I was feeling and transferring to him. I felt like, I drove my husband, who had no interest at all in computers or anything to do with social media into needing support from strangers online. I quickly got over that, because he needs support.  He needs to be speaking to people who get the day-to-day challenges of living with someone with PTSD.

When I ask my family, friends, support system what can I do? What do you need? The answer is always the same, and I think appropriate. They say you don’t need to do anything but keep healing. You’re doing great, you are doing exactly what you need to be doing. I think that’s the best answer to give someone living with an illness because our job is to cope with, heal, and live a contented life within our deficits. We have to trust our caregivers will get the support they need so they can have the same kind of happiness in life.

So, my question is: If you are (or were) a caregiver, family member, part of a support system, or a friend of someone with a physical, mental, emotional or chronic illness, What do you need?

 

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

 

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42 thoughts on “What do the Caregivers Need?

  1. Vilina Christoph April 17, 2017 / 6:55 pm

    I believe, like you said, it is time to recuperate. And also very important – not to feel guilty for needing this.

    Liked by 1 person

  2. Zen Drops April 15, 2017 / 8:24 pm

    I am not… Not without great heartache. Or if I’m running an errand. But not really for just pure joy.

    Some people I know need time to themselves just as caregivers do

    Liked by 1 person

  3. Alexis Rose April 15, 2017 / 7:40 pm

    I need a break from the day-to-day stuff sometimes and I love the opportunity to travel, but I dont need a break from my husband or kids.
    How do you take good self-care. Are you able to get time alone?

    Liked by 1 person

  4. Zen Drops April 15, 2017 / 6:09 pm

    Yes. I like this. Who heals the healers? Who cares for the caregivers?
    Do you need a break from him at times, though? I’m curious. I’m a caregiver, but when it comes to anxiety and PTSD, do you need times where no one is around?

    Liked by 1 person

  5. Alexis Rose April 15, 2017 / 2:35 am

    Thank You so much for sharing this. It is so sad to see disappear when someone gets ill and/or ages. Loneliness is just so hard on mental health. I think you’re correct about people seeing their own mortality, or that uncomfortableness not knowing what to do. In all reality, just being with someone, hanging out can do wonders. I hope things change for your family and the support comes soon.

    Like

  6. Rebecca April 15, 2017 / 1:53 am

    Great question. Like with, for example, mental health issues, more light needs to be shed on the role of caregivers. My MIL lived with us until we could not safely care for her. What I needed and still need is family and friends support for her. It is amazing how many people disappear when someone ages or has a chronic illness. The only thing I could come up with is they see their own mortality and can’t face the idea of finding themselves in that same place. But my MIL needs more interaction with other people. She is 93. She will not make new friends. She, and we, need her old friends and her family to step up.

    Liked by 1 person

  7. Alexis Rose April 13, 2017 / 7:06 am

    Thank you so much for sharing. Im so sorry that your husband has to face so many health challenges. Your caregiver role is huge and sounds exhausting. Having time off really seems to be a common need for caregivers. I think your suggestion about having ways for caregivers to earn money at home is fabulous. Not only would you be earning money but also connected to others in a different way during the time you are working. I know someone who works for an answering service in her home. She just needed a landline and computer. Caregivers are the ones who are forgotten so often, and yet are the glue that holds it all together. Thank you very, very much for your insight.

    Liked by 1 person

  8. caregivingforbetterorworse April 13, 2017 / 4:26 am

    I am a 24/7 caregiver to my husband… he is 54 yrs old and has Early Onset Alzheimer type dementia, congestive heart failure, stage 3 renal failure, COPD and another very rare auto-immune disease. I have been a full time caregiver since 2013.

    It is very difficult for me to consider what it is that I need, because I spend basically every waking moment caring for his needs. I think this is a common problem with caregivers is that you can get to a point that you have lost your sense of who you are and what your own needs are.

    If I had to say what I need the most right now… it would have to be – I need to be able to connect with other caregivers that truly understand what it is like to be in the situation like I am. You live everyday meeting their basic needs and there is no time to be social. If by some lucky chance that you get a break and can be social the friends you once had are either not around anymore or they have totally different lives than you do so its very hard for them to relate to you anymore.

    The other thing that all caregivers need i would say is a break…. and not just an hour out of the house to go run to the grocery store and power shop as fast as you can so you can get back home quick…. more like a true break to get away for a day or a weekend to go do something “normal” I often joke around and when someone says they have to work on monday or they wish the weekend didn’t have to end because they have to go back to work… i say oh wow if i could go to work it would feel like a luxury vacation!

    One thing I have often wondered was how does one afford to be a caregiver every waking moment and yet still be able to make income? Like I think there needs to be more ways for caregivers to be able to work from home so they can earn a living while dealing with their caregiver responsibilities.

    I think more awareness is needed to shine a light on the caregiving role and just how much we all give of ourself. Thanks for writing a book about this so others can better understand what caregivers honestly go threw on a daily basis.

    Liked by 1 person

  9. Alexis Rose April 12, 2017 / 10:23 pm

    This is a wonderful response. I really respect that you are so confident in your support system that they trust your strengths and abilities. That is an awesome support system! 🤗

    Liked by 1 person

  10. Alexis Rose April 12, 2017 / 10:21 pm

    Thank You for reblogging this post, Jason. 😊

    Like

  11. E April 12, 2017 / 10:14 pm

    The fact that you can ask this question is further proof of your own strength and resilience. Beautiful and thoughtful. Whether we’re in our own recovery or helping a friend or loved one walk through their healing we all need to learn and practice good boundaries. I love when my friends/sponsor/family/therapist trust my strength and ability by letting me struggle with something while still holding me in integrity; like pray for me, hug me, understand but don’t pity me or try and ‘save’ me. Good stuff ❤

    Liked by 1 person

  12. Opinionated Man April 12, 2017 / 10:11 pm

    Reblogged this on HarsH ReaLiTy and commented:
    A great conversation on caregivers by Alexis!
    Note: Comments disabled here. Please visit their blog.

    Liked by 1 person

  13. annjekins April 12, 2017 / 4:58 pm

    🤗

    Liked by 1 person

  14. Alexis Rose April 12, 2017 / 3:47 pm

    That’s so important. I think that may happen to many caregivers. Your own health is equally important as the ones you care for. 😊

    Liked by 2 people

  15. annjekins April 12, 2017 / 2:53 pm

    I need to realize that I can only give so much and not to neglect my own health in the process..

    Liked by 1 person

  16. Alexis Rose April 12, 2017 / 12:28 pm

    Thank You, Daisy. It would be great if our caregivers got paid. ❤

    Liked by 1 person

  17. Daisy in the Willows April 12, 2017 / 11:57 am

    What a great concept for a book. To be treated like people and to have their pay reflect their role in society.

    Liked by 1 person

  18. Alexis Rose April 12, 2017 / 2:25 am

    Wow. You really have an understanding of both sides. Living with a chronic illness and being your moms caregiver. Im so glad you’re finding time to clear your head so you can recharge. Thank you so much for sharing. 🤗

    Liked by 1 person

  19. fearlessinjesuschrist April 12, 2017 / 2:03 am

    Interesting question. I live with a chronic disease, multiple sclerosis, and yet I find myself in a position of being a companion to my mother turns 90 next month. I moved to North Carolina about three years ago to help with my aging father who passed away two years ago. As I continue to be a companion for my mother, I see that we are moving more into a caregiver position now. I have allowed her to be as independent as possible, but she’s needing more support every day. I get away to exercise, volunteer and do grocery shopping. I need that time away to clear my head and get me focused on what’s really important. Which is to be kind and gentle and patient and loving. I rely on God every single day so that I can be that type of person. My mother and I are so very different. She is an extrovert, and I’m an introvert. I’m really working hard to find a good balance with God’s help.

    Liked by 1 person

  20. Alexis Rose April 12, 2017 / 12:00 am

    This was wonderful feedback. I love what you said about laughter. Sometimes no matter how dark the day, the best thing to do is laugh. There is so much insight in your comment and it definitely isnt to long. Thank You!! 😊

    Like

  21. PTSDandbeyond April 11, 2017 / 11:54 pm

    I am not a caregiver, my husband is though. I would say a mental health day away from the issue. A day to just be themselves and do what they like. Information about the illness is also key. Even with PTSD there are signs and symptoms that a love one may see on a daily basis that are upsetting to that they were not expecting. I think that depending on how close the caregiver is to the person, the relationship may need its own therapy days. Where once a month or so both people go in and discuss what is working, how each can assist the other. This allows the person with the illness to feel some sense of empowerment. I think that everyone needs a reason to laugh. With my PTSD, I forget things almost as soon as they are said to me and sometimes the result is just plain funny. There is nothing else to do but laugh. The words I am here. Are also very powerful. to know that you have the support and acceptance of someone as a patient goes a long way. thanks for asking and I hope that this was not to long!

    Liked by 1 person

  22. Alexis Rose April 11, 2017 / 10:49 pm

    Awesome. The information meeting is in a couple of weeks.

    Liked by 1 person

  23. TheOriginalPhoenix April 11, 2017 / 10:47 pm

    It isn’t too bad. The training really helped and as long as you have a strong support system (if not your family, you can reach out to other volunteers) you’re good.

    Liked by 1 person

  24. Alexis Rose April 11, 2017 / 10:47 pm

    Did you find yourself getting stressed doing hospice? Im thinking about volunteering for a hospice program.

    Liked by 1 person

  25. Alexis Rose April 11, 2017 / 10:42 pm

    Thank You, Terry. It a weird place that we are find ourselves “dependent” on our partners isn’t it? Not at all what we thought the future would be. Thank you to all the gods we have the partners we have. There are some days Jay deserves a medal for having to put up with my stuff. Have a good evening my friend! 🤗

    Liked by 1 person

  26. TheOriginalPhoenix April 11, 2017 / 10:37 pm

    This is so important to talk about. 🙂 Glad you’re sharing this post. When I volunteered for a hospice, I learned quite a bit about how much stress caregivers face.

    Liked by 1 person

  27. spearfruit April 11, 2017 / 10:15 pm

    Alexis, I relate to this post very much. You know I am not the caregiver, but I do have Gary in my life who is my caregiver. He does an amazing job and I cannot imagine my life without him. We spend much time together and I know he needs his space and time. Sometimes he will go to the gym by himself and do other activities on his own – this is his break from me. Thank you for recognizing the importance of these people in our lives. 🙂

    Liked by 1 person

  28. Alexis Rose April 11, 2017 / 9:23 pm

    I love this insight. The statement: I want so much to understand better so I can respond accurately when someone is on the verge and just a hand held out at the right moment can avert a crisis from occurring, is so compassionate and empathetic. I agree, we definitely have more in common than differences. I have confidence that message will start to spread.

    Like

  29. @vapor_sage April 11, 2017 / 6:36 pm

    I like this message. All of us need people that can relate to what we’re experiencing and giving our energy to. I’ll shout from the mountain we have more in common than that which we choose to keep us separate/divide us. I want so much to understand better so I can respond accurately when someone is on the verge and just a hand held out at the right moment can avert a crisis from occurring

    Liked by 1 person

  30. Alexis Rose April 11, 2017 / 5:24 pm

    Thanks so much Brigid. I love that you got what you needed. Im thinking that time to rest is hugely important for caregivers. 💕

    Liked by 1 person

  31. watchingthedaisies April 11, 2017 / 5:09 pm

    I have been a caregiver in the past, and I so needed time for rest, a bit of pampering/ healing from a kind therapist, and some great listening ears. I am blessed with great family support. Wishing you well with your next book Alexis xx

    Liked by 1 person

  32. Alexis Rose April 11, 2017 / 4:58 pm

    Thank You Oneta. I think Im so, so lucky to have him too, with his infinite patience. Have a wonderful day! ❤

    Liked by 1 person

  33. Alexis Rose April 11, 2017 / 4:56 pm

    Yes, Yes for sure! 🙏🏼

    Like

  34. oneta hayes April 11, 2017 / 4:53 pm

    So loving of you to understand and trust your husband to be honored for needing a bit of personal time. You are so right!

    Liked by 1 person

  35. dancingpalmtrees April 11, 2017 / 4:41 pm

    Alexis as the expression goes, “From Your Lips to God’s Ears.” Thank you!!

    Liked by 1 person

  36. Alexis Rose April 11, 2017 / 4:33 pm

    Thank You so much for responding. Funny, I was just reading your post too! That is really interesting about the lack of Adult Autism Siblings groups. I know someone in your position and it’s definitely a void, with support going to parents. Your fantasy sounds fabulous…I pray that you will have the reality where you can retire out of NYC and move to peace, quiet and feel tranquility, with Stephen if possible. 💕

    Liked by 2 people

  37. dancingpalmtrees April 11, 2017 / 4:13 pm

    I am a Caregiver to my brother Stephen who has Autism. Even though he does not live with me his group home is always calling or texting me. I Love my brother but the staff at his group home does not understand that sometimes my job requires me to work 48 hours straight with no sleep and that I need rest. I need a break. Causes many disagreements with the staff over my brothers treatment plan. Now I know that will never come as all my family is deceased. There are lots of groups for Autism parents but virtually none for Adult Autism Siblings.

    Fantasy

    More Free time. A 2 month getaway to a warm climate where I can lay on the beach and consume cool refreshing drinks. Walk along the sandy beach enjoying the weather being waited on hand and foot.

    Reality

    New York City is very expensive so I must work lots of overtime just to pay my rent and utilities. I have not had a go away vacation in years. Therefore I’m tired, exhausted and burnt out constantly. If I live to retire I’m moving out of NYC and will try to take Stephen with me.

    Liked by 1 person

  38. Alexis Rose April 11, 2017 / 4:01 pm

    Thank You for responding. That sounds great. I hope you have times when you get to experience that Bethany. 🤗

    Liked by 1 person

  39. bethanyk April 11, 2017 / 3:58 pm

    Time alone. A few hours a day to just be in my bed and watching something on tv or a movie that is distracting.

    Liked by 2 people

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