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Confessions of a Stressed-Out Caregiver

Often when I meet someone who has just become a caregiver, they ask me how I do it; “How do you handle the daily stress of working and caregiving full time while still managing a home?” I always reply, “I try to take it one day at a time and just deal with what’s happening that day.” Pearls of wisdom, right? Well, I’m here to confess, I apparently don’t deal with stress very well so I’m not sure that I should be giving anyone any advice on this subject. I’ve been caring for Lynn full time since 2009 and I can tell you, it’s starting to take its toll. Here’s my confession.

I do not take things one day at a time. I try to but I’m not very good at it.

  • I always have a running list of things I need to do in the back of my mind. For example, every time I run out of an item, I try to remember to write it down because I know I won’t remember it when I go to the store. Forgetting things stresses me out, including forgetting to write them down.
  • I keep a calendar of all future appointments and upcoming events because without it I won’t remember them. I don’t think about the appointment; however, until the day before it arrives. Then suddenly, I have this “interference” with my structured day and I’m faced with how to get everything that must be done at home and work accomplished along with the doctor’s appointment which always takes 4-5 hours out of my day.
  • I try to stay organized and structured yet my life still seems to be full of chaos and I can never seem to catch up. I always have those things to do that I’ll do when there is time and years later there still is not time.  For instance, I want to clean out my attic to give items to our church for a mission project but I don’t have time to go up there and sort them out and label them. Hopefully when Lynn and I are both gone, whomever gets the house will donate them to someone who can use them because it’s likely not to be done before then.
  • I have a ton of ‘want to’ projects but since they are not ‘have to’ projects the thought of them just sits on the back of my brain nagging at me repeatedly as something I ‘need’ to eventually do. I can’t separate ‘want to’ from ‘need to’ and the stress of trying to get caught up to do those ‘want to’ projects just never seems to be relieved.

I have what is referred to as a Type A personality. I come by it legitimately; my Mom has one, too, and I’m sorry to say, my daughter is just like my Mom and me so this curse seems to keep getting passed from one generation to another. My Mom has terminal cancer so I advise her to take it easy and do only what she feels like doing. Her response is always, “I will,” and then I hear of her cleaning up and cleaning out as if she isn’t ill at all. I worry that she will over-do it but on the other hand, it think it’s also her way of living out her life so I don’t push that point too much. I think she also hates to ask anyone to help her accomplish something that is “her” job. I’m like that, too. My daughter also pushes herself to her limits daily. She has a special needs child that has an “invisible” condition but it takes every spare minute she has to meet his needs and keep up her home. She is constantly worrying about others thinking she is making a mountain out of a mole hill regarding his condition so she doesn’t ask for help. I encourage her to nap when her son does and some of the time she actually does (so there is hope for someone in this family to learn) but often she runs on only a few hours of sleep (see, she’s just like me).

Me? I listen to no one. What’s worse is that I know what I am doing is going to likely shorten my life but I feel stuck between a rock and a hard place. I’m alive now and the things that I need to be doing won’t wait till the next day so I just keep going and going like the Ever-Ready Bunny. I feel guilty if I take a day off even if I’m forced to take one like when I’ve been hospitalized three times in the last two months. Each time I was discharged from the hospital, I came home and worked to get caught up until I was exhausted.  Is there any wonder that my stomach lining is eroding away from stress?

So you see, I feel like a hypocrite when someone asks me how to cope with stress. I’m overweight, so far out of shape I breathe heavily just walking a short distance, and I don’t get enough sleep. I’m a perfectionist that feels like if I don’t do everything well, then I’m not doing my part. I never feel like I do enough and I am constantly feeling frustrated and depressed. I know what needs to be done. I even know how to do the things that need to be done. My problem; however, is balancing my desire to keep everyone else happy, safe, and well, with my own personal needs. That, I don’t do well at all and it’s not because I’m such a saint, it’s because I don’t want to disappoint anyone.

So there; that’s the confession of totally stressed out caregiver who has not found a way to manage the stress successfully. I know that the only way I am going to be able to get this under control is through divine intervention so I’m praying for Jesus to step in and give me the strength and perseverance to change. I can’t do this on my own and I don’t have the will-power to stick to a regiment of diet, exercise, and going to bed earlier. I expect this confession will resonate with many of you. I share it mainly because I want you to know you are not alone. It’s something we all struggle with…daily. I don’t think any of us have an answer on handle to handle it all alone but I still think “one day at a time” and prayer may be the best ways.

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Comments

  • reenie53
    3 years ago

    Your “confessions” really hit home for me. So many caregiving stories are all “la-ti-da, it’s great” and make me want to gnash my teeth. My husband has had PPMS since 1998 and is pretty much wheelchair bound and needs help with toileting, showering, getting in and out of bed, dressing, etc., etc. He can usually transfer, but it’s a job. I had to quit working in ’09 to care for him 24/7.

    Most days, I feel like my life is passing me by. I dearly love him and there are days I don’t mind the caregiving, but I also miss the life I/we could be living except for this disease. Some days I get so tired of “doing it all” and wish I could disappear. With PPMS, there are no remissions, just progression.

    I usually try to take one week off a year and had a wonderful paid caregiver who would stay 24/7. Unfortunately, she has moved, so I have to start that search all over again:(

    One piece of advice I can give to ALL caregivers is to check with their State for an Aging and Long Term Care agency. Here in Washington State, it’s called Aging and Long Term Care and the people there are truly angels. They will help you navigate any programs your state has for caregivers. Sometimes there is free or reduced charges for respite care. I get 16 hours a month at $8, which is way better than the usual $26/hr for my area. And they work hard to find people who can “do what you do”. There are other services they can help with such as housework, transportation, etc. Don’t feel bad about leaving your person or asking for help. Everyone deserves a break once in a while. Remember, it’s illegal everywhere to make employees work more than 40-60 hours a week. We are working 168. How can that be right – or healthy??

  • Donna Steigleder moderator author
    3 years ago

    Good advice and well said.168 hours per week. No wonder I’m tired.

  • cacy
    3 years ago

    I, too, am the one with MS and not the caregiver. My best friend, who had MS, just committed suicide a few months because her she felt she was such a burden on her husband. Her MS had progressed very fast over the years and she didn’t like her quality of life anymore either. She decided this was the only solution. She was the most special person there was. She was a very gifted artist but could no longer do some of the finer movements with her fingers. Her husband was stressed from doing everything. He had joined a caregiver’s group to try and talk things over with others in the same situations. He made the remark to me once that he had almost started to look at her more as a patient than his wife. It was taking a toll on him. I’m writing this so any caregiver out there that is feeling any stress (and I know you are) to please step back and get some help. Don’t let this result be what happens to you. Many people were devastated by this suicide. We loved her and now deeply miss her. I think of something everyday I want to tell her. Check with any MS group to find extra help if your family can’t. But, please, caregivers, you are important people!!! Take care of yourselves! Don’t let that stress and worry and work overtake you! Seek out that help and take time just for you. All it takes is reaching out. Please do it!!

  • cacy
    3 years ago

    I

  • mary
    4 years ago

    I am not a caregiver I am the one with MS. And I hate it because my husband and daughter worry and do so very much!!!! I always tell them they need totals arepa their health to be able to make feel relaxed that they can help me. Also, I am lucky Ian at the point where they can take a trip with the guys or girls and I am still ok. Or I ama lifeline away.

  • Perilune
    4 years ago

    I’m a new caregiver for my 25 yr old son. There is a lot of suffering here, and we suffer too. I was planning a nice relaxing retirement, but right now I’m back to being the breadwinner. We’ve only been doing this for a few months & I pray for remission with enough function so he can regain some of his life.
    I too practice prayer & meditation. My support system is small. My friends are already tired of it, and have their own stuff.
    For us it’s deep sadness & grieving the loss of good health.
    Now both my sons have physical disabilities.
    I appreciate your comments and can learn. I’ve had many years of not caretaking- and honor your sacrifices.
    I’m not a do it all person. I’m more laid back & keep things very simple at home. Food is a constant challenge for a fussy eater who doesn’t feel well and is so sad.
    When I do retire @ 72, I’ll be poor, and will have to have some kind of life of my own, while providing care if necessary. I worry because I’ll be too old to help as this progresses… We do have to take care of ourselves. Like MS – it’s different for everyone. Bless us.

  • Donna Steigleder moderator author
    4 years ago

    God Bless you and your family Perilune. It’s so hard to see a child who is sick and it is more difficult to physically be able to keep up with the demands of providing full time care. Grief is a huge issue for all of us I believe. I get a lot of support from my church family and I hope you can reach out to yours for support as well. Take care. Donna

  • arerob
    4 years ago

    I sounded just like you truly although I have MS I have a husband with dementia I had just battled stage 3 breast cancer pnly to be told my mom and brother passed away Donna I hit a brick wall emotionally was no help to no one ended up having to see a therapist best choice I had made in a long time he gets to the the heart of the matter and it can shock you in my case I had PTSD as a kid and everything going on was constantly tapping into that so now I am learning some new techniques that help avoid those triggers and more this is not fair to you nor the person you are taking care of therapy works wonders try it hugs hugs hugs

  • Donna Steigleder moderator author
    4 years ago

    I’m so glad you reached out for help. I have done that off and on previously and have thought about it now but then there’s the problem of finding someone to stay here with Lynn while I go to an appointment, and a number of other excuses. so glad you had the courage to seek help. Hugs back to you.

  • ymtlb15
    4 years ago

    This spoke to my soul. Thank you for sharing. I am new to the world for MS due to my daughter’s symptoms. It does mean a lot to know I’m not the only one feeling this way. And yes, prayer has helped me cope… A LOT.

  • Donna Steigleder moderator author
    4 years ago

    It’s good to know where to reach for strength when I have none left to give. God Bless.

  • lipasi
    4 years ago

    I needed this today. Thanks to all of you for sharing my life. How I don’t know, but it helps when you realize you are not the only one going through these emotional roller coasters. Like all of you, some days I want to scream and cry because I am so tired and afraid I am not doing enough to ease my husband’s discomfort (diagnosed in 2000 with PPM, I am the sole care-giver, on top of that 5 years ago our oldest daughter passed away and our surviving daughter lives in Hawaii while we are in Ohio). We should stay in touch to give one another the “shot in the arm to make it through” shoulder. This has helped me today more than you will know. Thanks again and God Bless all of you and your MS people.

  • Donna Steigleder moderator author
    4 years ago

    Thank you. God bless you too.

  • mscaregiver99
    4 years ago

    Oh God Donna! Thank you thank you THANK YOU for your candid confession! I have been a subscriber for quite some time, and to be honest, I thought I was a really bad person for not being able to “handle it” like you. You seemed, through your writings, to be handling it to some degree.

    I am in the same position as you – totally stressed and hoping for divine intervention. I have hit rock bottom. I “wine” or “vodka” myself to sleep every night and cannot give up my smoking habit. I am also overweight and have metabolic syndrome. I am trying now to tackle the weight and metabolic syndrome as a first step in YEARS.

    My husband was diagnosed with MS about 25+ years ago…while we were still dating. We have 3 beautiful children (13, 15, 16yrs old now). The early stages, relapsing / remitting days were a piece of cake compared to now. Now, he has PPMS…has a catheter, no control over his bowels, and is not able to bear weight, cannot do much else other than sit in his wheelchair. Most of the times he can feed himself, but that’s touch and go.

    I’m 50 yrs old now, and I am very tired.

    I have been raising my children on my own since their very young age..I am the sole income provider…I am the Mom and the Dad…I am the EVERYTHING. I feel so alone…add menopause to all this…which incidentally…no one gives a damn about because as you know…the focus is ALWAYS on the person with the disease.

    Friends and family “used to” always ask how HE is doing. And up until the last 2 yrs, I have sheltered them from hard core TRUTH with the usual “everything’s fine, everyone’s good” spiel. I never told them the truth of it all. I never confessed!

    However, in the last 2 years, as the disease has progressed, I have become less tolerant and have started to let family in on my trials and tribulations. Not in a mean, angry way…simply factual – when they ask me how my day was, i will not hide the truth. Depending on the day, it might go like this – “Well, I was up all night with him as he couldn’t sleep, and then he had a bowel movement, so I spent from 3-5am cleaning him up, then I had to get ready for work at 6am. And then I came home at 7pm, had to make dinner, clean up, and follow up on this and that..”

    I am afraid that this has led to alienation. I think I scared them away. I think they think it is my fault for having married him in the first place (because he contracted MS before we married) and WORSE for having children. I…I don’t even know what to say to that…maybe they are right? But what person could do that?? After he was diagnosed, he told me that i could walk away now and he would totally understand. I said to him..”it’s too late, i’m already in love with you. How can i leave now?”. Every day now, I think about that day. Wondering if I should have walked away.

    I have given up EVERYTHING for him.

    My house (as it is a small house, not ideal for wheelchairs and all of my walls/doors are scratched from the wheelchair.

    My bed (now I have a single bed and I arranged to get him a hospital bed).

    My bedroom! As he now has his bowel movements in his disposable underwear, usually while in our bedroom. My bedroom smells like a farm. And it’s a small bedroom, just big enough for a queen bed and an armoire however every corner of the bedroom is filled with is paraphernalia (creams, lotions, catheter supplies, disposable underwear, towels, pills, etc.)

    MY “quality of LIFE!” I have no life. I don’t go anywhere. I have no money. It’s all about him, and my children of course.

    And the worst! My Children’s Life. My wonderful children are caregivers too. They are there to clean up the accidents when I am not around. Although we have 2 hours/day where PSW’s come in to clean him and tend to his needs, “accidents” never happen when they are around! My children are there to heed to his beck and calls every 15 minutes along with having to deal with being teenagers, and the pressures of high school. Two of them have jobs and are trying to work as much as they can because they know they will have to pay for their own education. This is the worst feeling. I feel awful. They go to a Catholic school and the wonderful principal keeps telling me that they will become strong, caring and compassionate adults. I wonder. I sincerely hope so.

    I am beside myself. Everyone (co-workers, PSW’s, my mom) keep telling me that I am an “angel”. That I am so strong! That I am a “good wife”. I keep SHUTTING them down! I told a PSW worker just today, to NOT put me up on that pedestal. I am NOT that good person/wife. I am NOT an angel. If I were, then I would not be feeling this anger…If I were, then I would not be lashing out every day. If I were, then i wouldn’t need to self-medicate to sleep every night. If I were, then I would not hate myself.

    There are two sides to the story. There are those stricken with the disease, and then…there are those that CARE FOR THEM. We, the “caregivers” are often forgotten and misunderstood. I pray for strength and hope to God that when my turn comes, I will have the sensibility to “do something” about it so that my children will not have to suffer, again.

    I’m 50 years old. I want to start enjoying my life before it is over. Although I did a lot with my children when they were young in terms of local events, amusement parks, everyday walks to the park after work, etc., I have never taking my children on a vacation! Ever! Next year will probably be the last chance before I lose them to school, friends, etc.

    I wish God can hear our cries. God bless YOU, the “caregivers”. You are all wonderful. Thank you to this forum for letting me vent.

  • Frankie Love
    3 years ago

    MS caregiver 95
    Thank you for your post, Like you, I know what it is like to have to do everything. My wife has had MS since back in 95,We have gone through all of the stages and are in the Secondary progressive stage. It was 12 years in April since she was able to walk, and it’s been 2008 since she was able to feed herself. With the proper meds she is with me mentally. Yea got her set up with the hospital bed. It’s tough when you have to do everything, I know- but I don’t share much with family. yeah- guilt trips, stress, work at a job, food shop, pay bills, yard work, laundry, cook, clean, feed, bath, and clean up the wife with just a little time to my self. I can never be sick. I hear you- Thanks for your share – you are not the only one that is going through this. Trust me
    Wishing you the best on you life’s journey
    God Bless my Friend

  • mscaregiver99
    4 years ago

    Thank you so much Donna! I cannot tell you what a RELIEF it is to hear this side of you! In a sad way, I do feel a tiny bit better about myself.

    The “angel” thing really gets to me. I feel like it just adds MORE PRESSURE. I am looking for a way out…a reprieve…I want help!…I want to be rescued! The last thing I want to hear is someone giving me KUDOS! “You are so strong!”, “You’re a Super Mom”, “You’re my hero because I don’t know if I could do what you are doing”. Oh, and I love this one…”remember, God only gives you what you can handle”. He’s obviously not looking at me.

    I literally had a breakdown in my Dr’s office when she went on and on of how I have to take care of myself because I have the children that depend on me. I freaked! I burst into a crying fit. She had to calm me down as I was hyperventilating. The stress. The pressure!

    Don’t they know that I KNOW IT’S ALL UP TO ME? That it’s all ON ME? I know that! I’m so scared! And so lonely. I have been married for 25 years however I have husband for only 5 of those years. I know he loves me. But. It’s just been too long.

    It is really..nice…to be able to talk to someone who knows what I am going through. I gotta go now. My face is running like Niagara Falls and I don’t like the children to see me like this.

    Take care!
    Sandi

  • Donna Steigleder moderator author
    4 years ago

    I can so understand what you are saying. One of the things that distresses me the most when people say it is that “I’m an angel” and just like you, it makes me want to cringe with guilt. I’m far from an angel. I get resentful and angry and want to give up but not really. I think about my life vs. his life and get jealous of HIM, really? Jealous of him when he can’t do ANYTHING? I know it’s just me feeling sorry for myself and I pray for forgiveness and grace all the time. I really don’t know how to deal with this any better than anyone else and I don’t really “manage” it all that well except I do what I have to do to keep going. I don’t know how you manage with three children. The multiple priorities have got to get to you every day. I wish you well and I wish you sleep and some quiet…just a few hours away at someone else’s house to sleep would be a gift I wish for you. Take care of yourself the best you can and know that you’re doing a good job just being there and doing what you can.

  • PattiandBob
    4 years ago

    One day at a time and prayer is how I do it too .. but lately I find I am cranky as all get out (with my husband who does not deserve it). I hate it when I verbally “attack” him rather than have a normal disagreement or difference of opinion. I’ve been my husband’s full time caregiver since he “retired” on disability in 2005. He has secondary progressive MS and we’ve been married for 42 years now. I love him dearly and pray for his health and strength .. I would do anything to help him and protect him and bolster him .. but there are days I am soooooooooo tired of it all. Days I simply wish it would all end … days I want to lay lay down and cry .. but I can’t. There are days I desperately need just 2 hours all to myself .. but that is impossible .. and days I simply need to vent as I am doing now .. so .. I have no advice to offer, I am simply “venting” .. I guess we each simply have to take a deep breath .. pray for strength, patience and health and walk out smiling and ready to help our loved ones. God bless each one of you ..

  • recyard
    8 months ago

    Sorry for all of you guys. I do not know when my wife was diagnosed , I know it was before we were married, she never told me that she had MS. I found out on my own. I have been married for twenty-five years, and it was terrible all of those years. I raised two boys on my own, because I did not know what was going on. I’m in the process of divorce right now. I pray for all of you guys, I know what you are going through. I love my wife unconditionally , me knowing wouldn’t have changed a thing. I had know support from her family ,. She filed for divorce.

  • mscaregiver99
    4 years ago

    Thanks PattiandBob for being so candid. I kept all these feelings to myself for over 20 years and only in the last couple of years have I looked for others like me where I can be free and candid to discuss my true feelings and frustrations. Since I have been opening up to family/friends, I have learned that they really don’t want to know the details. I was afraid what I might do to myself having all of this bottled up inside of me for much longer.

    Like you, and EVERYONE who has been caregiving for an extended period of time, there are times when you simply cannot help it. It’s frustrating having to deal with the ever changing ‘new lows’ that this disease presents us with…like having to help my husband through HIS depression, when “I” too am suffering from depression! And having to deal with MS dementia on top of the physical obstacles. Always putting his needs before mine. He is sure to meet with his team of Dr’s regularly, organized by me of course…yet I never go to my Dr’s…and even missed my annual appointment! I arranged for someone to come to the home to provide dental services for him. Yet, I just realized that I have been missing my dentist appointments for over a year! This makes me feel resentful. And this in turn makes me feel like a bad person. I get depressed. And I cry a lot. Especially when I start talking about all of this.

    Just know that it is normal and you are still a good person as you are doing whatever you can for your loved one.

    It is not only normal – as caregivers sometimes we forget that WE have rights too! And be honest…When was the last time someone did something for YOU?? My friends get diamonds, cars, trips, and even just some simple flowers and chocolate. I haven’t received anything for years.

    I have ALWAYS been a caring and giving person. Always being there for others and willing to help those in need in any way I can. Even though I have little to give. However, when you don’t ever get anything back it can be disheartening.

    Sometimes you have to be a little selfish and say “Hey! What about ME??!”

    I am learning to do this. The first step is to be truthful about my feelings to others and accept that it is OK NOT to like being a caregiver. I will still do what I have to do, but i don’t have to like it! And I’m OK with saying so!

    Keep praying. I am hoping for miracles for all of us.

  • Donna Steigleder moderator author
    4 years ago

    I think venting can be healthy as long as we don’t vent to our loved one. Unfortunately, I am guilty of doing that too often. I hate that I sometimes take it out on him but just as you have shared, there are times that I am just too tired to control myself and it just comes pouring out. God bless you and your husband as well.

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