Living with caregiver burnout, how do you cope?

Liss79,
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!!!

Liss, I know so many times one hears about taking time for yourself, which is so much easier said then done. Forget dining out or going to the movies, there was always that fear that as soon as the meal was placed in front of me, or the movie was starting, I would get a call that Dad had fallen and needed help getting up. Mom refused caregivers.

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.

There are several good TED talks about caregiver burnout. YouTube has lots of great videos if you search for "caregivers need care too".

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.

Everybody has to find their own way to cope..but I do ride my bike everyday and just going out for a little while (less than an hour) really helps restore me. I also managed to keep a small job (I only work 4 -6 hours a week because mom is full time and have a friend who watches her while i work)--so when mom dies at least I can support myself as I can put in as much time I want. I also got free college because I won scholarships and most of my classes were online, so my four-year degree was achieved. There are still a lot of things you can do as a caregiver. However you really have to make straight As which means studying your guts out and do your work--but it's all at home. YES you can study at home and work while she is in the same room with you. That's all in your power. That degree really does open opportunity so I won't starve when mom dies.

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 hate to say this, but the only answer is there will be no more caregiver burnout till you no longer have to care for someone anymore. After 10 yrs of doing this and all the classes I went to for caregiving and classes to learn that you have to take care of you, the caregiver, truthfully, nothing works until you are no longer caregiving anymore. There is something that happens to your brain that all you know is you kind of have to forget about you a little and your LO becomes the most important. I don’t care how much they say, take care of your health 1st, take care of you 1st, yes I agree with that and that’s all fine and dandy, but it’s not reality. In retrospect, because my mother died 3/2/19 and as I look back at all the things I’ve learned and how much better I feel now I think the whole thing really is something we cannot control when we have to take care of somebody, it just happens to be the actions that we have to do putting LO 1st and us 2nd and burnout is inevitable. I suffered a little more than normal because I found out I had sleep apnea and of course that made less of 100% of care to my mother, in only the fact that I was very moody, but I still kept good DRs notes and took action when I needed to. The only answer I have come to to avoid caregiver burnout and I think this is a good one, though it will not go over well, is I feel, that family members need to take turns in caregiving the elder, if it means 1x every qtr or 1x every 6 months that you are 100% free of the elder, I think that is the only way to avoid burnout.

Please see the question and answers to slartabart's question about getting paid, etc.

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 was a 24/7 hands on caregiver for my mom who was bedridden in my home on hospice for nearly 2 yrs. She had multiple health issues and I had nurses when she was in the hospital train me to do wound care. She developed a stage 4 bedsore in a 5 star Medicare rated NH she was in for rehab after a fall. The long rehabbing did not work and eventually she became completely bedridden. I had to give insulin shots, manage medications and a urinary catheter, as well as deal with fecal incontinence. Needless to say I was pretty burned out and only got through this one day at a time. Meanwhile hubby had a heart operation, and I had an eye operation from a spontaneous retinal detachment. I got through it all by compartmentalizing and taking it one day at a time. Hospice did help though they were there only a few times a week. My mom finally found peace 3 yrs ago, I had a year long "window" of trying to get my bearings throughout a business sale and taking care of mom's things while I was still reeling from the whole thing. I never got my bearings before my SIL died, leaving my husband and I as the sole caregivers for his 88 yr. old mom, now experiencing memory issues. I feel pretty much I went from one rough time into an impeding other rough time coming very soon. This whole time covers 6 years so far. My advice is to compartmentalize each day, or even hour if necessary, and do many little things for yourself. The little things like a good cup of coffee and watching birds, looking at decorating magazines, or whatever you enjoy add up. I call it the "bank of me" Small amounts do add up. I wish you well, {{hugs}}, Katie.

"Caregiver Stress" and "Caregiver Burnout" are BIG concerns now and there are lots of websites with various suggestions as to how to take care of your self.  Google "Caregiver Stress" and "Caregiver Burnout" and see what websites interest you.

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}}}

First of all, know that you have done a great deal for the patient and you must now accept that this cannot continue. Not everyone is made to be a caretaker or perhaps only for a short while. I have a firm belief, based on experience. Once the act of caretaking starts to make you feel overwhelmed, burned out or otherwise being destroyed a little at a time, YOU MUST STOP AND MAKE IMMEDIATE PLANS FOR FULL TIME CARETAKERS OR THEY MUST BE PLACED IN A FACILITY. There is no other choice. These people have lived their lives and now it is YOUR turn. There is help out there with finances, etc. Talk to the Office on Aging, AARP, an eldercare attorney - but start doing something to end your caretaking before it is too late for you.

You start by asking yourself what you do to relax. Then do that first. Then you look for a support group in your area. Then go there each time they meet up. Then you learn to forgive yourself if you've been guilt tripping yourself over minute things beyond your control. You breathe in and breathe out and take it one day at a time. Then know it's okay to keep going at this pace.