portrait of senior african american lady laughing and looking at camera

When people talk about overcoming disease or disability to live an incredible life, so often the caregivers are left out of the story.

Many caregivers don’t identify as caregivers — we’re so absorbed in the needs of whoever we’re caring for, we forget what it’s like to be us. We take our own work for granted sometimes.

What does it feel like to be you?


Exhausted. Learnt bucket loads of patience over past 8 years. Lonely. Really grateful for current medical schemes in Australia. Sad for those without same privilege.

Janet


I don’t think people want to feel the way i do.

To be me is to be sad, angry, depressed, lonely, irritable, short tempered, sometimes confrontational with strangers, cold hearted, withdrawn and just don’t care about anything and anyone.

This is only for this week. Never would’ve i thought that being a full time unpaid caregiver to my parents for over 21 yrs would be this hard.

Bob


How does it feel to be me? Wow, that’s a challenge. Most of the time, I really like myself. I like the fact that I don’t cringe in the face of adversity. I meet it head on. I believe firmly that there’s no such thing as a stupid question. I also believe in repeating my question to many people in order to get an understanding of the best course of action for my family and myself.

I have learned that taking care of myself is as vital as taking care of my loved ones. I have made conscious decisions in what I eat every day. I take the time to walk, often with music that makes me smile. That’s a very important thing too. Music must be able to make you smile. I avoid music that makes me frown. I see a counselor to take care of my mental health too. I am not afraid to admit this need.

I know without a doubt that I was blessed with a kind heart and do my best to be nice to others every day.

Mimi


I’m a partial caregiver to my married son in Cal. I’m in Dallas. He’s post 2 liver transplants 17 yrs again at 16 yr, severe ulcerative colitis and depression with suicidal thoughts. His wife has trouble understanding so he calls me. I’m an RN also. I’ve flown out when he’s in depression crisis. It’s very frustrating because of distance and stubbornness. Feel helpless over phone.

I’m caregiver also to my 30yr old daughter who is 3 yr post third liver and kidney transplant. She shattered ankle over Xmas in car wreck had 3 surgeries and 4 admissions. That just added more stress. This daughter doesn’t work goes to school part time, too afraid to do too much alone, no friends, no social life and messy to boot. She gets SSI and still on our insurance which is blessing. But she’s my biggest headache. My other two younger daughters have been out on their own since college.

Then they diagnosed my husband last summer with possible dementia. He’s 64 and retest this summer. Been told it might just be him. God willing.

I had to quit work as home health RN because it was too much stress to caregiver at work and at home. I feel lost very alone and all I want to do is complain to people. I go to counselor, take anti depressants and anti anxiety pills. Sometimes I just want to scream or curl up in a ball and sleep. Have other health issues myself as we all seem to and I feel like my tolerance is slim.

Becky


No matter how much support I receive, I still walk this path alone. So I would say a general feeling of isolation is how it feels to be me.

Melissa


I am exhausted, overwhelmed, and frustrated some days and some days are so very rewarding. I do it for love.

Barb


Before I became my disabled husband’s caregiver, I was my mother’s family caregiver (9 years), and my twin grandchildren’s caregiver and guardian (7 years). I am my disabled husband’s caregiver now (close to 4 years). From this experience, I learned that I need to keep doing what I love, and that is to write. So I’ve continued to make my writing career a priority. This decision led me to write four books for family caregivers. Another book, about raising grandchildren, is in production now. Writing makes me happy and when I’m happy, my husband is happy. He is my biggest fan and wants me to keep writing. I will admit, however, that two roles—caregiver and author—keep me jumping. Writing can be difficult because I’m constantly interrupted. Thankfully, I am a disciplined author and have good work habits. These work habits carry over to caregiving.

Harriet


It’s an honor to be able to be my wife’s caregiver and I take pride in how I take care of her. I appreciate the kind words from family and friends about how well I do with my caring for me wife.

On the flip side though, I’m tired and I don’t know what my identity is anymore. I’m so wrapped up in her needs I admit that mine take a back seat, in fact they’re in the trunk. Please understand that I’m not bitter, she didn’t ask for MS.

I know that I should get some help, but in my mind who’s going to do it, and better yet who’s going to pay for it. So I’ll do what I always do and keep moving forward, I realize this is on me and for me to get the help I need. I just wish that we can go back before MS and stay there, when the most difficult thing to do was to figure out what to have for dinner. Thanks for letting me vent a little.

John


This is how it feels to be me.

I first became a caregiver in 2011. When I started I was in a size 10. Now I’m in a 14/16. Stress shows in my face and body. I look in the mirror and don’t even recognize this person. I was married and just became a divorced woman.

I have found out that I cannot depend on my siblings to help take care of our Mother. They have not stepped up at all. I feel angry and resentful. But I also feel strong because although it’s the hardest thing I’ve ever done and I’m doing it.

My Mother battles a horrible disease and it’s in my face everyday. My siblings have not seen one ounce. I know I’m doing the best I can and I know I’m helping my Mother that once helped me. You never know what you can do if you don’t try. And you do whatever it takes when it gets tough.

God has not abandoned me but people have. It is very isolated when caregiving and you are no longer “available ” to others the way they expect or want you to be. You will sacrifice much. And it’s hard to find time to take care of your own needs. But I’m working on that.

I plan to find time to go for a walk everyday. And to drink the water I need everyday. And lose the stress weight. Cortisol stress hormone please stop attacking me. I’m already battling LBD.

Anonymous

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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35 Comments

  1. It is painfully rewarding. I miss not being to help my Mother. It was 11+ years. I would give anything for one more day to love her and care for her.

    Reply
  2. Like the song says… “Sometimes it’s Heaven.
    And sometimes it’s Hell.
    And sometimes I don’t even know!”

    Reply
  3. Fulfilling, yet very exhausting. I am my little boy’s caretaker and I would not have it any other way.

    Reply
  4. Our whole life changed the day my husband got sick. We went from a thriving husband and wife team with our golden years all planned out. But instead for the last 8 years I have been his caregiver. The only way I can describe it is I am a widow to a live husband. Most days are stressful and exhausting, others are scary, but most of all I fight everyday to make sure he is comfortable, vitals are stable, keep his meds straight, stay in contact with drs and his nurses. At the end of each day I go to bed worrying did I do my best.

    Reply
    • I’m hearing every words sounds just like our life

      Reply
  5. Sometimes very lonely my husband has MS,I feel I have lost my identity I just wanted to be a wife now everyone calls me a caregiver

    Reply
  6. Know one knows unless you’ve done it! Much respect to all that have!

    Reply
  7. Like being married to it

    Reply
  8. I agree with everything.. hardest job ever.

    Reply
  9. What in the hell do you think

    Reply
  10. Gift education love exhausting

    Reply
  11. I find it peaceful, I think the only way you can deal with it is by being peaceful

    Reply
  12. It can be such a difficult situation to be in, but on the other hand it’s a joy to caregiver for someone you love more than life itself. Caring for my daughter after she became a quadriplegic at the age of 43 gave us a whole new outlook on our relationship. It made us realize that we had to take the bad with the good & find new ways for her to have a good quality of life. She’s my hero, she excepted her new normal with very little drama. Rarely having pity parties, which God knows she was initialed to on occasion ! She’s now living in her own home with 24/7 aids & I now only fill in instead of being the 24/7 caregiver & enjoying having her very 1st home of her own! It’s been a long journey but I’m so thankful I was able to care for her for 5 yrs until my doctors said no more! Would I try & do it all over again? Absolutely!

    Reply
  13. Agree with you all. My husband been I’ll for 9yrs now they told us he would be lucky to have 18 mos its a blessing to have him but its also a burden. I pray hourly for peace understanding patience etc etc cause no support here. I get tired of clarifying conversations his needs and then I feel bad cause he can’t help it and I don’t have a right to feel that way. Thank God he has gotten me through each day and I look forward to tomorrow if its his will. Peace and strength to you all

    Reply
    • One of the main problems with being a caregiver is we’re usually in it alone, I was very fortunate that my husband was such a tremendous help. But sometimes we need a village & don’t get any relief which our nerves & body so badly need.

      Reply
  14. Always having to be on high alert…every sound you fear….never knowing what each day holds brings on such anxiety. After 8 years of being my husband’s caregiver, you would think it would get easier, but it doesn’t. With time comes each new diagnosis, changes in medication, watching for side effects, looking to see if this medication helps the seizures or puts him in a psychosis, the all night watch that turns into the next day….and then the dreaded doctor visits…

    Reply
  15. It never ends, emotions run high more often than not, outsiders are exactly that.

    Reply
  16. I’ve gotten so used to doing everything myself.. easier than the alternative most times… .

    Reply
  17. Not so good sometimes, when everything lands on you all at once. Stress is a daily companion. So is biting your tongue. Respite is counted in minutes, not hours, not days. And it never ends. For some, coping is easier, for others, an hourly struggle. When you start feeling trapped…finding a peaceful place within is next to impossible. That’s my reality.

    Reply
    • I know how you’re feeling, it’s a hard road to travel! God bless all caregivers!!!

      Reply
    • I totally get it i have all those emotions. But what saves me is my friend Dawn M Giordano-Avery it helps to talk to someone. And my pastor Howard Avery thanks

      Reply
  18. Lesley, care to enlighten hahah

    Reply
    • ” WE WILL BE HAPPY TO TRANSPORT HIM HOME TONIGHT!”
      Bwahahahahag

      Reply
  19. That’s how the story goes

    Reply

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