worries keeping caregivers up at night with insomnia

As caregivers, we frequently suffer from insomnia as all the things about caregiving float through our minds.

Here’s what’s keeping our community members up at night:

I just had surgery & I haven’t been able to take care if my elderly housebound mother so I feel like I’m neglecting her even though my uncle & cousins have stepped in to help while I’m out if commission. – LP

It was the stack of unopened mail I had. Nothing was in there that I can’t handle. Gonna try to get a habit started to keep on top of it. I HATE waking up in a panic wondering if there’s something important I’m ignoring. – SP

I give my son cornstarch & glycosade tube feeds so he can make it thru the night without having low sugar, death, seizure. – TG

What am I going to do when my Dad passes. Where will I live without a job, even IF I get one at 60, I cannot support myself. – AR

Being smothered by all the worry relating to my husband’s many illnesses: cancer (bladder, prostate), atrial fib, asthma, pancreatic insufficiency, depression,you name it. He’s being worked up for new diagnosis now. I have at least been desensitized to what he “might” have now and I don’t panic. Progress! – JP

My husband can’t get along with his dad with Alzheimers. His dad says things that are hurtful and my husband takes it all personally, even though his dad really doesn’t know what he’s saying. – NM

Checking that my husband hasn’t dislodged his pillows that keep him comfortable while sleeping, sometimes scary intrusive thoughts when I’m more overworked than usual, careless comments from family triggering lots of bad memories from childhood. But I treasure the good sleeps I get, they keep me plodding on. – WM

What keeps me up at night is thoughts about my sick husband and aging dad. I am a full time caregiver for both, and I can’t sleep waiting for something to happen. I’m always on edge that something bad is going to happen to them. They are my life. I’ve been married forty-one years, and have been my husband’s caregiver for that long. He has multiple illnesses including residual nerve damage from Guillain-Barre Syndrome he contracted at the age of eight. He also has Lyme Disease, heart disease, and many other illnesses. I worry constantly. My dad just celebrated his birthday. He is 92 and rapidly going down. My dad and I are very close and I can’t see my life without him, or my husband. What many people don’t realize is that caregiving is a 24/7 job, and very stressful. We get no days off. I promised I would never put my dad or my husband in a nursing home as long as I can do for them. I have zero help. I have an older sister who does nothing to help, but that’s OK. One day she might need somebody to take care of her, and there will be no one. Yes, I am very angry about her selfishness. My brother has been deceased for four years now from taking his life, which also keeps me up at night. I think about him all the time. We were very close also. People who are not caregivers haven’t got a clue as to what we go through. – TS

I’m gonna go with my dad every day for cancer treatment. He’s terrified to have the iv. I applied for over a month off work, but I am unable to drive (epilepsy) and have a child and a full time job. I need to find us way into hospital every day with 9 yr old in tow. I have no way to go to hospital every day. – GA

Two of my three children. My middle kiddo is severely disabled and goes by the best of his own drum when it comes to sleeping. I’ve tried many different techniques over the years to get him onto a regular sleeping schedule to no avail. So, he either sleeps or just hands out in his bed at night. That is, unless he’s too loud and wakes up his sister who’s only 17 months old and shares a room with him. She also has a bit of an unusual sleep schedule due to growth spurts and her brother. Between the two of them I am lucky to get a sporadic 4-5 hours per night. – AI

Mom gets out of bed several times a night. I hung a small but loud wind chime on her walker and I’m so attuned to it that it wakes me immediately. Which is why I did it. I’ve had 3 good nights of sleep in a row (vacation) in 5 years. – AA

I have brain cancer but it’s a type that this far hasn’t been identified. The surgery could not remove it all. I had planned to help Mom through her final days now I’m relying on friends and family so Mom, who still knows and loves me doesn’t know what’s happening to me and that I may well die before she does. Yep that keeps me up at night until the meds kick in. – KM

He just doesn’t sleep we share a room, but not a bed and he’s up and down all night. I have tried everything nothing is working, I finally slept 6 hrs straight for the first time in ages and really don’t have a clue what he did all night. Is this shameful of me? – JW

My daughter. She wok around 3:45am coughing a bunch and has spiked a fever. She is 7 and has a trach which is a blessing and a curse. I hate seeing her sick, and I hate all the stuff I end up missing because I don’t have adequate support. – BA

Healthcare. As a cancer survivor with health problems that is going to die without medicine I worry that I will not be around to take care of my mom. – DH

Ugh, just had a uterine biopsy which luckily showed no cancer, but I was freaking… who would take care of my brother if anything happened to me? – PM

I have pain, too, from meds I received for osteoporosis and from a stasis leg ulcer. I settle my son, kiss him goodnight and pray I can get a few hours of rest. – DS

Worrying about my husbands coming MRI’s and what the results will be. Will we have to go through a 4th holiday season filled with doctors, surgery and recovery? I really really hope not. – PJ

It’s my husband he has cancer is In his brain and spinal cord and there is nothing they can do for him. So I sign up and listen to him breathe. – SL

Maintenance of the apartment; it’s getting harder. I’m preparing for my adult dependent daughter to be getting her own place. – TK

Work, as I work in a hospital and see and hear people suffering. I help with what I can, even if it’s just holding a hand or fixing their beds. – BL

I stay up thinking that the phone will ring saying my mom has fallen again…I just can not shut down. – NE

So many things…Getting my beloved parents home cleaned out and up for sale! I have lost many hours of sleep! – SR

Money. How do I pay for everything that needs to be taken of? – BJ

We are waiting for a call from the transplant coordinator for a donor match. – CG

Calling the nurse’s station for updates. – JD

Keeping my mom safe. Her mental illness causes her to do some dangerous things. – LS

Who will care for my daughter when I’m gone? – BM

The usual doorbell ding ding from my son needing rolled over. – EM

Did I remember to refill all the meds needed for my wife? – BS

I worry about everything: finances, my health, my house repairs, icy roads!!! – AY

Guilt and sadness. Fear and mortality. – BJ

Written by Michelle Daly

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43 Comments

  1. Being aware and keeping Mom safe.

    Reply
  2. Wondering if mama might get up during the night and fall

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  3. Last night, Mom, waking me up every hour for some little thing. Of course, this means she got no sleep either. :'(

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  4. Bills, no car, Dr appts, my health issues

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  5. … literally everything.

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  6. Caregiving…

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  7. Missing my husband i lost him in October

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  8. Drunk sister

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  9. I worry about previous clients who I am in contact with…worry that they are being taken care of as well as I took care of them.

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  10. worrying about am I doing enough? am I doing what is best for our mom? why do my brothers and sister not care enough to go see our mom in a nursing home just once a month? what should I do next? wishing I could understand our mom that can’t express herself very well after her stroke

    Reply
  11. reading that article caused me great stress when I read the overwhelming list of what we all go through. That made me chuckle too. “It’s just too much”…she said, running down the hallway screaming.

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  12. I don’t even know where to begin. 🙁

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  13. Worrying about getting my loved one recertified for Medicaid. She will die without 24 hour home care.

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  14. details and to do lists that seem to reproduce faster than I can keep up with. I used to have one. Now it is Mine, Theirs, Household (i.e all the things I should clean/organize/wash but will still be there tomorrow if I don’t).

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  15. Wondering if I feel like waking up in the morning at all.

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  16. Constantly worrying about my mom and being angry with God over the whole issue!!

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  17. Wondering if my 87 yr old mom had enough activity today & food.

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  18. Last night, watching over and comforting my 88 year aunt while she is begging her God to take her hand. God hasn’t granted her wish as of this morning.

    Why would anyone, let alone God, allow such suffering is beyond my comprehension.

    Reply
  19. His over night coughing & our tiny monthly SSD stipend!
    My husband has early stage COPD, along w/his other issues (all vascular related) !

    Reply
  20. Wondering mind , hearing if he’s breathing, watching to see if he gets up cause he’s fall risk, thinking I hear something even if I don’t, medicine time…..

    Reply
    • Have you considered a remote bed alarm? These are great and sound off as soon as they get up.

      Reply
  21. My mom, my pain (physical and emotional.)

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  22. I often have serious body pain from the help I give all day everyday to my husband with advanced PD. My mind also works overtime trying to figure the how to’s of the next day.

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    • Debbie, my husband has the same thing. He’s home and is bedridden. I hurt, also, from turning him. It’s tough.

      Reply
  23. …i’m caregiver for my 86 year old mother who has Alzheimers stage 5…but wait…my 3 older siblings are showings signs of it too…but wait there is more…my 4th sibling with special needs is already in a group home and by the end if the week I have nothing left for her….But I know that HE carries me. God is good. We are blessed.

    Reply
    • You would be more blessed with unlimited funds to have in-home help 24/7 to assist you and your family members…

      Reply
  24. Dealing with Huntingtons disease and the way it is stealing my one and only son. Wondering what is the point in anything

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    • I was in therapy decades ago and it was not a good experience, in conclusion….so I am hesitant to suggest, let along consider it again…but hope you have someone you can talk to who supports you.

      Reply
  25. Worrying about my daughters care now that she’s in her own home & due serious medical conditions of my own I can no longer be her 24/7 caregiver!

    Reply
  26. Worrying about my 26 year old son with High Functioning Autism. Heart wrenching.

    Reply

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