Liss79 Asked May 2019
Living with caregiver burnout, how do you cope?
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Where do you even begin to heal from this? How do I begin to put my life back together? Especially when you're still a caregiver? Besides "taking care of ourselves", how do we heal? What exactly does "taking care of ourselves" actually mean? I feel like I have forgotten how to properly do that. Seems kind of sad, but I have.
I feel so overwhelmed and exhausted that even making a tiny step in the right direction, seems impossible some days. I know I need to do this for myself. I want to be happy. I deserve a life too. But how do you see through all the emotional and physical fog in order to do this?
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PLEASE READ THIS ENTIRETY!!
I have been struggling with Caregiver burnout” for a very long time. My mom moved in with me 6 years ago and has developed Alzheimer’s and Vascular Dementia in the last 2 years. I thought I would lose it! It is so tough taking care of your elderly parents because they don’t want you to do anything, listen to you, or take any advice from you what so ever!
I finally decided to look into a daycare which when I tell you I hesitated I did for two years! I tried to talk my mom into going but she ALWAYS fought me on it. Then one day I decided that I was going to take her for 2 hours know matter what happened. Well she cried, she was so upset with me. She gave those workers the nastiest looks and me. I told her just to “try it” she may like it and actually LEFT! I came back after the two hours as promised and she LOVED it! Everyday after that she begged me to go. Crazy! Then one day she said she wanted to “stay there”. I said you mean live? She said I don’t know. I said try it for seven days (respite care) she went one day and I left as usual and then signed the papers for 30 days! I can back to being her favorite chair she cried and said she didn’t want to stay. I told her she is just “trying it like she did before” she was so mad at me. When I left and shut her door she cried and said she “Hated me” I was devasted. They told me not to come back for seven days!!!! I almost died in those seven days I swear! But I had to take her to the doctors on the seventh day and I met her there because if I would have come to pick her up I was afraid she would have wanted to come home. She cried and said she missed everyone but I told her let’s see what the doctor said. I asked the doctor ahead of time to tell her it would be better for her to stay there until she got better (her rotator cuff was torn) and she said “ yes, that probably would be better” . Now she doesn’t cry to come home, loves it there and is making great friends. She plays bingo which she always told me she hated, makes crafts which she always hated, and socializes which she NEVER did! I am thrilled and I get to go back to being the daughter! Believe it or not I don’t get frustrated when I am with her because I can actually see how bad her dementia is getting and feel bad again. But that that is a good thing, but I was getting to the point where I didn’t even have feelings anymore.
So I totally get what you are going through! We have to be the adult and they are the child. It’s sooo hard. Good luck and please don’t hesitate to ask me anymore questions! I’m here if you need to talk!!!
And for sharing your story.
I know I didn't go for my own doctor appointments due to the fact that I was taking both my parents [in their 90's] to their primary doctor, dermatologist, ophthalmologist. cardiologist, podiatrist, oncologist, gynecologist, dentist.... did I miss any other specialized body part?
Anyhoo, if I saw one more waiting room I was going to scream :0 I final learned when handed a clipboard with forms to fill out, I would write across them "same as last time". That saved me from talking loud asking my Mom, who was hard of hearing, personal questions that I didn't know. We did get a good laugh when I asked Mom if she was pregnant.
Oh how I wished I would have listened to my own primary doctor who recommended I take pills to help take the edge off. I was anti-pill when it came to this type of medicine, but after the fact I could kick myself for not trying said meds. Taking the meds now. Also did talk therapy.
It's been two years since my last parent had passed, and I still have the shakes from the stress, and here I wasn't even hands-on or living with my parents. I don't know how some caregivers do it. It just wasn't built into my personality.
Plus when you think about it, we are placed into a "job" where we had zero training. In the outside working world, we wouldn't even been hired much less be called in for an interview. Yet society expects us to be experts on this complex elderly journey.
If I had to do this all over again, I would have set up boundaries. I didn't even know boundaries existed until I found the Aging Care forum. And that it is ok to say "no" without experiencing guilt.
I found a new hobby that keeps me occupied and away from sitting in front of the TV so much. I am shaking the family tree via Ancestry. It's been so fascinating.
Thanks alot
Personally, I have neither the money, platinum-plated insurance plan, or time to see a therapist. This forum is my therapy and the good people on it have gotten me through more tough times than I can express. And the best part is that it's available whenever I want it.
You are really asking about how to make a lifestyle change. You need a plan; a written plan that includes one thing you will do for yourself each day. Schedule that into your day planner and keep your appointment with yourself. Plan your meals. Plan your activities. Plan your chores. Having structure helps.
You are young. Build a community around yourself. Join a house of worship, book club, knitting circle, etc. Volunteer your time for a cause in which you believe and makes you feel good.
You're also going to need to learn to establish healthy boundaries for yourself. It's impossible to be a caregiver 24/7.
You have to remember you are still a person and not just a shadow of some old confused feeble person. Do your best for them..but remember yourself as well. Afterall when your loved one dies all you will have LEFT is YOURSELF.
I thought it would all work out, but I could not have been more wrong! I got almost no help whatsoever from siblings who were plenty critical of everything I did and didn't do! Even one that worked in a nursing home for god's sake.
I couldn't visit my own long-term boyfriend in another state (where I was living before I went back to help my mother) because neither one of them would come and give me much of any relief.
Get paid, take care of yourself no matter what. I don't mean that placating comment "take care yourself" that you hear from everybody. I mean get contracts, get paid, put money aside, this is a job! I could not be more adamant about this. I learned the hard way.
I am financially, physically and mentally ruined and turns out my mother had enough money to be fine. I lost what little savings I had, my business and my job. The only person that helped me was my boyfriend from a distance because we were each taking care of an entire house, yard, our businesses and others at the same time. I finally got out but it had to be pretty much an ultimatum and now they're dragging me through the mud. "The house was dirty." Yes, the house was a little dirty, I was trying to keep my mother in the house, not beating me up, not beating up the caregiver, not screaming all the time, eating etc., etc., etc., but I'm the bad guy!!
I didn't know my mother had funds because it was all secret, and I was doing many things professionals should have been hired to do. Everything and anything everywhere to save my mother every dime possible.
Now I am destitute. I've ruined my Social Security future. I've ruined my life.
People who should help you, could help you and know better will leave you to die, and I almost did. I'm in my late 50s and I'm ruined. I'll have to work till I'm dead. I'll be living under a bridge because I have nothing left except for what someone else is helping me with.
If you had read this to me several years ago I would've said it was pure drama and exaggeration. That's not true, this is just the tip of the iceberg! It ended several months ago and I can barely talk about it. I still end up crying, shaking, terrified, and with anxiety attacks while I am trying to put some semblance of a life together. Everything in my life is such a mess that it's not like oh the switch turned on and everything is back to normal. I guess I thought for some reason that would be the case because I was just so desperate to get out, but everything needs putting back together from pieces of me and my life strewn everywhere.
I've written more than enough here, and likely far more than you wanted to hear, and I have to try to get some things done today but I try sometimes to talk about it to see if I can move on in my life, but it's far more slow and difficult than I expected, if even possible.
i wonder how you are doing today? So sorry to hear of all of the sadness in your story. Could you manage to get some help with coping? Anti-depressant? You sounded so desperate, and at the end of your rope.
In my case, after trying to manage my controlling mother by myself for 2 yrs., I am recognizing (with the help of many replies, such as yours) that I’m headed in the same direction as you, because I put mom’s unreasonable demands/wishes/selfishness ahead of my own needs. My mom is very charismatic—so fun, so cheerful, artistic, etc. We 4 kids idolized her, probably indulged her too much, and she expects too much from adult children who have their own families and challenges. Point: EVERYTHING is about her, now. And I feel stupid for not looking out for myself.
And, she can afford to pay me, but doesn’t want to.
This site provided me with many opinions and lots of good information which I was very ready to hear.
I’m going for counseling, I need supportive help.
I’m going to get anti-depressant meds, because I recognize I can’t cope by myself right now. I’m going to work on taking care of myself—shouldn’t be ALL about mom.
What I wonder about you—have you taken steps to help yourself? Are you finding a way out of this mess?
I wish the best of the best for you. I SO relate, but am finally learning to take care of me—Why was that such a hard lesson? Well, that’s for therapy...love.
Are you talking with a therapist? Many of us caregivers have found it helpful to talk with a professional as they can help you develop coping mechanisms that relieve some of the emotional and mental stress. {{{HUGS}}}
Your response really hit home for me. I do need to forgive myself for the endless guilt trips over things beyond my control. I became a pro at those. I am working on creating healthy boundaries and leaving the guilt trips in the rearview mirror.