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I just need to talk it out. After nightmares for a week, and eating lots of sugars for 2 nights, and then crying before sleeping for both nights, I realized I was burnt out. I haven't had to race with someone to the ER (or follow ambulance in a snowstorm) since late Feb., so I though I was doing better, eating well, getting to my own appointments, handling details and making decisions. I really thought I was improving, catching up on my stuff, not just the triage effect of doing the next right thing to keep us all alive. I think what happened was I had time to relax and feel how really tired I was. With more sleep and a few spring walks, sitting in the sun, I began to realize just how long my life has been difficult. How many can relate? Some background - I have had my aunt in home for 6 1/2 years. At first I enjoyed it. Besides the time to set up POA, move accounts in state, sell her home, get a sitter/companion, we had time to go sight-seeing up through the mountains where she and my uncle used to vacation. Aging progresses to where she can no longer move around without a walker, can't remember what was just said, and can't be reasoned with. She won't go out, even to sit in the sun on the porch. Getting her to any appointment is a chore, and sometimes acting like a stern parent on my part. She can't get any food for herself except donuts and coffee, sleeps a lot. Meanwhile my husband has been ill for a year, gradually getting worse. I have gone from the two of us taking care of one person, to one of me doing all driving and watching out for two. They can't be left alone due to dizziness. Aunt falls only in mornings, though not at all for 6 weeks (and a whole year before that), but hubby could fall at any time. He hasn't for nearly a year, but has come close. Yes, I increased companion times, and one can drive my husband to important appointments if I can't. All his tests are negative, and he's now in limbo as to cause. Doc is on it, but I am no longer patient. He does take care of self, talks with visiting nurse, makes calls, etc., but some home chores I have taken over. No, no nearby relatives. I used to go away for one week a year to stay with a son or a brother and his wife, but not last year. They flew here to visit us. I get out for my own appts. and to buy groceries. I am going to bed early, and calling again tomorrow for aunt's meds, and for respite care. How are you doing? And how did you know before you burnt out?

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I don't think we can see it until we get there. My goal was to see it through until the end and I was very unwilling to stop, especially after all the effort I had already put into it. I knew I was stressed but I would get up every morning thinking positive thoughts and determined to do better than I had the day before, but gradually I found myself losing patience earlier every day - when my serenity didn't last beyond breakfast, when everything she said and did irritated, when I began to hate everything about her... only then did I know something had to change.
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Thanks for your input cwillie. My irritation has been increasing too. Today I called a friend and announced I was going to use caregivers to get aunt to appts. She said jokingly, good for you, as long as they aren't serial killers. I replied that might be ok too. Even though we laughed, I knew I'd reached my limit.
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I am right there with you. I am so depressed all I do is cry all the time anymore. Over everything.
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If your son and brother flew to visit you this past year instead of you visiting them, would it be possible for one to take over care giving for a week while you visit with the other? If that's not workable, maybe you could arrange respite care that let you get out of the house for a couple of days in a hotel? I find that having even a small "break" from the 24/7 responsibility helps a lot. Even sleep is different when you don't need to listen for someone needing help or get up at a certain time to make sure they are OK or taking meds, etc.
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You are not alone. I cared for my Mom over a decade. In the end she was staying in my home, on rehab after numerous hospital visits in, NH, then to my home with in home rehab. I asked if the service could take her to appointments if I couldn't. They said they could not. I finally found a caring van driver that took Mom and I to her appointments. The bath aide came in once a week. Everything fell on me, wound care from a stage 4 she got in the first rehab NH, (it was rated 5 stars by Medicare), insulin shots, catheter bag, fecal incontinence etc. Trying to get her to doctors. All fell on me. She ended up completely bedridden after the last hospital stay and rehab in a better nursing home. I tried to get her on hospice but no one would help in the hospital she was last in, though they had a hospice program. No one came to evaluate her. There was even a nurse practitioner who came to our home that was called to our home by the rehab company nurse when my Mom got one of many UTI's and our family doctor would not prescribe an antibiotic because she had a catheter, and that seemed to terrify him and he wanted to send her to a urologist. It was exhausting for my Mom to keep getting out to doctors. This nurse practitioner said she would prescribe an antibiotic. After her initial and only visit where she did nothing but talk about herself and her entire background and history in Europe, she disappeared with no antibiotic for my Mom's UTI. I called an ambulance to get my mom help with the UTI. My Mom ended up in the hospital and to a better nursing home for the rehab they kept saying would help her, which when rehab didn't work we were able to get her on hospice at home. Only then did things get easier and the hospice people were wonderful. Burnout for me during all the trauma....One day I had a spontaneous retinal detachment and lost sight in one eye. I had emergency surgery and a 2 month recovery during which I still cared for my Mom with hospice help. I remember cleaning my Mom in the bed and not knowing why I was going blind in once eye., just knowing I had to take care of her and keep her clean and comfortable. My husband too, ended up in the hospital with heart problems....yet I soldiered on. I was planning on getting a respite stay for my Mom that the hospice people set up, when my Mom began to decline and passed away. This was the hardest thing I have ever done. I love my Mom so much and she is at peace now. I got most of my eyesight back in that eye. 2 years later I still cry and feel anger at the many medical people and nursing homes that failed us where I had to step in. I was beginning to feel better and do things when my SIL died leaving my husband to care for his 87 year old Mom. .....Please try to get a little respite any way you can, even an hour to yourself. Little things you do for yourself add up. I wish for you much strength and also to all the other caregivers going through a difficult time. {{Hugs}}, Katie.
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One thought about your aunt not getting anything for herself except donuts and coffee. As my mom's short term memory problems increased and she moved in with me, she stopped getting stuff out of the fridge/cabinets (even lifelong favorites like ice cream) but continued to eat anything left on the counters. I don't think she remembers where the food is so I make sure the fruit bowl is always stocked and added icon labels to my cabinets. I make the labels by taking a picture of an item (cup, plate, cottage cheese, leftovers, etc) and then taping a small print to the front of the cabinet or fridge. I also use see through containers for leftovers and place her favorites in front at eye level. I got some see through containers for crackers, cookies, bread, etc. When I'm out of the house at mealtimes, I leave a note telling her what is in the fridge and how long it needs to be reheated in the microwave. Sometimes I fix a plate of food she can reheat. She always fixes herself something when I'm out and now she usually fixes a snack for herself or the visiting great-grandchild daily. I got started down this road when I noticed that Mom didn't fix cereal for her breakfast when the box was in the cabinet but if it was left out on the counter, she would fix her own bowl with her morning coffee.
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I can totally sympathize! I know that I have reached my breaking point many times already, and yet I just keep pushing through it and beating myself up. Mum will be 97 next month and has lived with us for 7 years. She has dementia, COPD, CHF, high blood pressure and is incontinent. And a bad attitude! But I can't seem to make the decision to look into long term care. She goes to Adult Day Care two days a week which helps us both but at $80.00 a day we can only afford eight times a month!
I know the frustration you are feeling. I know I feel trapped, and hopeless. I've run out of patience, and many times even compassion, which scares the heck out of me. My husband and I are totally isolated from friends because we can't go out. We are in our mid and late 60's and retired. When is it our time? Sorry to unload, I know it doesn't help you at all, but then again maybe it does knowing that someone else is in the crazy situation, beating themselves up, knowing they are doing way more than they physically and emotionally should. I keep hoping "I'll know when I've had enough". The truth is, I'll probably never give up! God Bless.
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I've been dealing with it for 6 (7?) Year's. Originally it was just 'hanging out' with my granddaddy after I graduated. He didn't need anything at first we just had a deep bond so idk go over and make a sandwich for him (and me) for lunch as well as supper (just popping something in the oven) so it would be ready for my grandma when she got home from work. However slowly my granddaddy started to show signs that well he was just done (everyone says it started a few days after I graduated because it was like he just had to hold on for me but now I didn't need to go to school) I still didn't need to do anything for him but I kinda noticed something was up though at the time I was completely clueless. But after about a year I needed my grandma to retire (money wasn't the issue) but she was too selfish and didn't want to deal with it. I'm not sure when she finally did retire but from there it only got worse. As soon as my grandma retired I suddenly realized I couldn't hang out in the den all by myself all day (she controlled the tv now and forget about me listening to music/dancing in the den and trust me I couldn't stand anything she watched (at the time I didn't realize how much she liked crime shows) but finally I did get into a couple of them. But that left me sitting at her dinning room table all day writing (I have an entire probably 500 or so page book I wrote about my whole ordeal with her since that time written under Snow White and the seven dwarves with me married to one of the dwarves... Grumpy believe it or not) or going in the other room to ride the bike and read. No, going home wasn't an option, this was my duty. Of course things got worse over the next... 2 to 3 years over which my grandma turned into a monster (she started swearing at my granddaddy (me?) Constantly, yelled like crazy just nasty) and I suppose that was slow too but it got worse and worse until my granddaddy died. Now I think 3 years after he died (my grandma did get nice for a brief time) my grandma is worse than ever and if I wasn't on depression medicine (I've been on it last I guess 6 years) I don't know. Even with it I can get emotional if someone says something to me in the wrong tone or if I feel like someone might be saying I did something wrong (like simply asking what I got at the store) which probably comes from my grandma as she over that time told (and still does) me so many demeaning things it's not a joke. Now I am spending most of my days wondering when she'll die while also wondering if my mental state will ever get better. Oh and I guess I should mention my gm has worsening something (dementia???) But Drs haven't determined anything is wrong with her so that adds to my frustration between how she still continues to treat me (and worsening) and my mom who is in total denial as well as kinda blows to the wind anything I tell her about her mom. I'm also upset with my psychiatrists who I've seen I think last least 4 years if not longer. She has for months suggested bringing my mom in (it started with my grandma until I explained because of her mental state there was no use) by a coincidence my mom had the day off my last appointment so she took me... I asked the dr to explain to my mom how she and her mom are hurting me... NOTHING. My last appointment I asked her about it she even admitted she considers what they do to me is abuse but gave no reason why she didn't say something to my mom something I specifically asked for (like she was skirting around mentioning it) I AM SO FRUSTRATED!!! 
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OMG, Katie22, I totally relate to what you had to go through with medical people and institutions that failed you. If I had to divide the trauma and stress I went through for 15 years, I would say 1/3 was from managing the personality and emotional changes of my loved one, and 2/3 was from the chaos of our medical care system.

You did an amazing job taking care of your mom. I hope you can start to recover some feeling of well-being for your own health needs now, even if its just getting used to what it feels like to not be in a state of emergency 24/7. Bless you, sending TLC thoughts to you and all who are sharing their stories here.

Debbie1955
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I'm burned out too. I've been in an accident, gotten my first speeding ticket in over 20 years, lost my spare car keys (among many other less important things), missed work deadlines... within the last month.
I'm becoming more and more anxious about driving. Soon my license will be suspended from the fines that I've racked up so quickly and can't afford to pay. Trying to keep it together.
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You only need one person to care for. Is your mind and heart fighting against what is rational and good for you too? If you exhaust youself you could really suffer. Sometimes we just can't see the answer because we are torn and pulled. I hope you can find a goal and solution for a more reasonable plan. Its ok to say I cannot do this anymore.
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At least half of these stories describe PTSD. (In addition to burnout, anticipatory grief and complicated grief.) We are in a societal crisis.
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So...is it worth it? What are other options? Are their lives more important than ours. Are you willing to allow other caregivers to do imperfect jobs? Are you really the only one that can do this? Maybe so. I’m not sure about it all but I am sure I am not willing to sacrifice my life for theirs. They lived their life. They did it all. What about me?
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If you think you're burned out then you are. Many of our loved ones have become burdens. In the beginning, being a caregiver feels like a privilege; however, as their needs (not to mention wants) increase, they drain themselves and others of all sorts of resources. Add depression or worse, dementia, on top of caregiving, and it's like pouring gasoline on a fire; it consumes things quickly. All that said, recognizing that burnout is real is the first step in making changes and taking care of yourself.
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I totally understand and sympathize with you. I moved my fil in 4 years ago and have been doing everything myself. My husband works and really isn't much help. My fil has a colostomy bagand all kinds of other health conditions and dementia. We finally got hospice in Sept and I was just told Friday that they have to release him this week because he is not declining fast enough. So now I will have to go bhai to doing out myself. Thereare times I don't leave my house for 2 months. My husband does all shopping on his way home. I'm tired and need help but have no-one to help me.
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You only need one person to care for. Is your mind and heart fighting against what is rational and good for you too? If you exhaust youself you could really suffer. Sometimes we just can't see the answer because we are torn and pulled. I hope you can find a goal and solution for a more reasonable plan. Its ok to say I cannot do this anymore.
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What would happen to them if you died? Someone would take up the slack. Please, please, all of you take care of yourselves first. Feelingtired, your husband probably isn't working 7 days a week. on his day off, get out of the house. It is his father, just stand in the door with your keys in your hand and when he walks in, run out. I literally did this with my ex-husband when the kids got too much for me.
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What would happen to them if you died? Someone would take up the slack. Please, please, all of you take care of yourselves first. Feelingtired, your husband probably isn't working 7 days a week. on his day off, get out of the house. It is his father, just stand in the door with your keys in your hand and when he walks in, run out. I literally did this with my ex-husband when the kids got too much for me.

GrannieAnnie, When you are in a crisis mode you can't think rationally. it may be time for your aunt to move to a care facility. Maybe even your husband. What will happen to them if you die? Don't they say 30% of caregivers die before the one they are caring for? I am so concerned for everyone here who feels trapped. My heart goes out to all of you. (((HUGS))). Tears are running down my face and my heart aches for all of you.
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Thank you for all you replies. Tears ran down my face, too, as I read them. First as relief, for being heard and understood without having to spell out all the details, or without being judged. And then for concern for you, too.

I'd already decided where my line was with my aunt. When she fell and injured her back, I didn't know till the next morning, when she couldn't lift herself to get up for the bathroom. She was soaking wet, and I couldn't even roll her over to get her into dry clothes before the ambulance arrived. She is taller than me, and I cannot lift her. If she gets that way again, and it is not temporary, I cannot keep her here.

My husband is another story. his bad health has sneaked up on him and me too. I need time away to be able to think clearly. MaryKathleen was right about not being able to think rationally in a crisis mode!
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Grannie Annie, you have an opportunity right now. The thing that caught my attention is that you couldn't lift her. You are risking your back plus your aunt needs more than you alone can provide. Your aunt is in hospital? Time to speak with a social worker about her condition and your inability to continue to care for her. Three days or more in hospital, you then send her to rehab/nursing home (try to pick a good one that is close by) so that if she clinically qualifies to stay after rehab ends, she stays. Then, you can focus on your husband and yourself. To be sure, you will remain quite busy because you will regularly visit and advocate for your aunt, but some of the pressure will go away.
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linina2 - I didn't say when, but her hospital stay was over a year ago, and she was out for a week, then in-home rehab. She gets around with a walker. A few months ago it was the ER because she passed out. You are right, I could hurt my back, so I don't try. Glad for 911! I am trying to get her in-house visiting nurse for blood tests and health checks, but that will be discussed at the well-ness check-up.
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I burned out a couple of months ago. I saw it coming, but had no options for planning any sort of respite.

Respite came regardless. I'm still dealing with consequences.

I knew I was getting burned out when I sought out this forum, started obsessing over finding support, tried to [micro] manage aspects of caregiving that were completely out of my control.

Then nightmares, insomnia, overscheduling myself to accommodate and try to control caregiving. Lost 12 pounds.

Then, on my way to take mom to doctor's appointment, narrowly missed an SUV that lost control and flipped in front of me. Two weeks later, I rear ended a car and lost my spare keys the same day. A week later a speeding ticket. (Clean driving record for 20 years prior.)

Two and a half months later:
Can't manage my bills with the sudden influx of financial obligations to keep my license. Unmanageable guilt from being unable to keep any commitments or any communication with my parents. Missed Mother's Day, Fathers Day, Stepdad's birthday, my mom broke her foot- couldn't even get my stepfather to get a haircut. It's been quite the spiral...

If you think you are burned out- you are. Take a respite before it takes you.

❤️💕🙏🏻😞
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