On Caregiver Burnout

Jen

On Caregiver Burnout

Jen
sun-rays-182170_640I didn’t set out to write this. Not tonight. Perhaps not ever. I was doing a Google search for something else and this site came up. I came back and revisited my words. Time heals.

To recap, my mom had a stroke. She was left paralyzed on one side and has cognitive issues as a result. Ultimately, I took over as her legal guardian while I was in the midst of a divorce. Eventually, I realized that I had to move my mom to my state. I couldn’t manage her care from across the country. I brought her to live with me and my three kids, ages 17, 3, and 7, at the time.

The wait to get her on disability was long, despite the fact that she was already considered disabled in her home state. No assistance was available. The ultimate goal was to get her into assisted living here, which I expected to take a month or two tops.  I knew caring for her would be a stretch, but what were the options? She had been hospitalized for neglect-related issues three or four times in one month. There was no choice. I had to make it work.

My mom started off sweet as sweet can be. She thanked me every time I changed her. We had heart to hearts. I cooked for her, bathed her, and handled everything related to her hygiene. One month turned to two. Two turned to three. We found ourselves at odds. I couldn’t please her for anything. She became combative and accusatory. She attacked my kids. She cursed at me. Still, we pressed on. We had no choice.

As we neared the six-month mark, with still no disability status in sight that would have qualified her for facility care, or would have allowed me some in-home help, she just stopped trying. I swear, I did everything I could. I have no regrets. I came when summoned, often every 10 minutes. Helping her in and out of her chair. Getting her snacks. Helping her with the computer. I catered to her every need. But, this came at a high cost. I worked from home and my paychecks were dwindling. I was digging quarters out of my car to be able to buy cheap hot dogs for dinner. I had to be present every moment to keep my mom separated from my kids so she didn’t hurt them… not easy when you have a three-year-old.

It wasn’t until she refused to do what she could do on her own that I said, “Enough. You will do what you can do.” I refused to budge. She was posing a danger to herself, throwing herself out of her chair, complaining that she couldn’t transfer at all without being lifted. I had even started paying a helper to come once a week to give me a break. My mom literally yanked the woman into bed and called the woman a wimp.

These things, these behavior issues, are something only a caregiver understands. We roll with it because we have to and out of love, but it takes a toll. Amid all this, my brother appeared on the scene. He accused me of mistreating my mom. He demanded that I keep catering to her because “It will only be a week or two more.” (She wasn’t covered for three months after that, BTW… nine months after I brought her here.) He didn’t care how she was or what she was doing. He just expected me to deal with it. He coddled her on the phone. Told her what a bad person I was. Meanwhile, I spoke to my other brother in our home state. I told him what was going on and he told me to stick to my guns. My local brother would have to support us or he would have to take on the responsibility. I couldn’t do it anymore. Not with him encouraging the bad behavior from her.

In hindsight, this was the burnout talking. I see this. I can look at all my previous words here and I see it so clearly. Even still, I can look back and I have no idea how I hung in there as long as I did. I know in my heart of hearts that I did the best I could. I have no regrets.

My brother lasted a couple of days with my mom before he decided he would pay out of his own pocket to get her into an assisted living facility. Within a week, she moved from his home. But still, he blamed me, as if I was some family kicking post that was just supposed to keep going when there was nothing left of me. I worked and cared for my mom and three kids 24/7, seven days a week. I had no money to feed my kids. I slept three hours a night because my mom refused to accept that a 4 a.m. to 5 a.m. wake-up was unreasonable. I did this even when I had pneumonia. When I was tired. When I would have given anything to crawl back into bed and just pretend the world didn’t exist. I asked for help. Nothing. I begged for help. Nothing. I demanded help. Nothing.

Here we are, a year later. I am my mom’s guardian here in my state now. My brother decided not to fight for it. He took over managing much of her care… for a while. I took her for an appointment once and came back to find him in her room, trying to set up her meds. He was tossing bottles around the room and cursing. He called her unreasonable and was furious with her demands. She was calling him several times a week and asking for things. Her pills were messed up. She “lost” the nicotine patches he left for her. And on, and on, and on. It only took a couple of months before he finally realized what he had done and just how much work she was, and he wasn’t even providing her daily care. Oh, how I wanted to shout “I told you so!” Instead, I said nothing, and offered to arrange for the residence to handle my mom’s meds.

Before that change took effect, my mom’s meds got messed up and she went without her anti-seizure meds for a week or more. She was hospitalized. He blamed the pharmacy and said it was their fault that they were out, but I called the pharmacy and nothing had been called in. The hospital said it had to have been a week or more that she went without it in order to start having convulsions. I never said a word. He knew she was out. He knew she needed it. That was his responsibility and he pretended as if he did nothing wrong and to this day, he still has animosity towards me about refusing to lift my mom out of bed when she could do it on her own.

Issues like this, they can bring out the worst in people. These days, my brother and I act more like a divorced couple with child custody issues. My mom is in a residence. I oversee the care, manage physicians, and set up the med schedule. He visits her when he’s free. From time to time, we exchange notes on her care. It’s curt and professional. It’s the best we can hope for. Someday, I know he is going to look back at this and realize what happened. FYI, it turns out that while I was begging in for help with my mom, he was a gambling addict. That’s why he didn’t help. He’s never apologized and I don’t expect him to, but I do think some day the depth of his abandonment will sink in and he will feel it. Until then, amicable is okay in my book. I’m glad for the peace, even if we have no relationship.

As for my mom, she needs to move again. The home she’s in isn’t good. She calls for help repeatedly throughout the day and overwhelms the staff. They started triaging and seeing to her last. Only, this means that they may let her sit for 45 minutes or more at a time, waiting for help to the restroom or whatever. She’s had several falls. She still talks about how she doesn’t need a guardian and how she’s going to move home. At first, she was going back to her husband. When he stated dating again and their divorce was finalized, she switched to moving in with my brother in our home state. Then, she decided she was going to go live with the woman who stole the money from the funds that were raised in my mom’s name. My mom doesn’t realize her brain isn’t going to get better. Every month, she and I have the same arguments. She wants more cigarettes. Okay, Mom. A carton of cigarettes costs you $55. Your underpads for the bed cost $35 to $40. You get $100 after your housing is paid for. She also has a phone that I mostly pay for and hygiene supplies that I mostly pay for, but every month, she tells me there’s more money in the account. “Mom, between your one carton and your underpads, you have, at most $10 left before we even look at the other things you buy.” She accuses me of stealing money. She tells me life isn’t worth living if she can’t have more cigarettes. She tells me to short her residence because “They aren’t doing anything to earn the money.”  She’s also going to get a job, so she can buy her ticket home.

This is our present chapter and, frankly, I think this is as good as it’s going to get. She’s healthy. She’s cared for. My kids and I are on our own schedule again and they’re doing well. I see all these stories here of medical mishaps and hospital visits and I count my blessings. We’re all okay and I am not burned out anymore. I can smile and nod and say, “Okay, Mom” when she’s being difficult.

Thank you to everyone who supported me and sent warm wishes while I was sinking and a BIG thank you to Denise for keeping this place going. I won’t be a frequent flyer here, but you all touched my life and I am grateful that you guys and this site were here in my darkest hour.

The other reason why I wanted to write this is because I want other people who are in a situation like I was to know that this journey is not easy. It WILL test you in ways you cannot imagine. Everyone will tell you to get help and to accept help, and you should. But, you need to build your support system early and you need to have contingency plans set up before you have trouble. You need to know who you will go to for help when you can’t do it anymore. That day will come. Early on, you won’t believe it, but it will. Don’t feel guilty, but get help -- anywhere you can. Plan for the days when you’re sick and tired. Plan for the days when the money runs out, for when your caree turns against you. What you’re doing -- what you’re all doing is so incredibly noble and there is not enough support in place for family caregivers. I am humbled when I read these stories. You are all amazing people and I am honored to have known you.

Like this article? Share on social

4 Comments

Sign in to comment

shay

I just cried my eyes out, that was 6 months, that's all my mother could handle before she dropped me into full responsibility for the past 6 years with no help. I'm resentful of my brothers, they found love and got married, I can't even go on a date. I'm angry at the people who claim to love me but will cater to him (brain injured grandfather) but never even ask for real if I'm ok. Can relate so much..

Denise

I'm so glad to hear from you, Jen! And, I am relieved that solutions for both you and your mom fell into place for you. It's just soooooo hard when it seems that solutions and resolution are nowhere to be found. I'm particularly happy that you can sleep again!!\r\n\r\nI hope you will continue to update us as you can. You've got a great story and I hope you continue to share your chapters with us. The search for and move to another facility is a chapter that we all can benefit from reading. :)

Lisa

Wow, Jen! Thank you for sharing your journey. (((Hugs)))

LauraCT

Amazing, Jen. Thanks for sharing!