October 24, 2016 at 11:29 am #56069
I’m leaving this anonymous because I’m ashamed of how I feel. I love my mom and am happy to be there for her, no matter what she needs. I would never do anything to harm her, ever.
I’ve been taking care of my mom for the past 4 years, through cancer treatments and diabetes complications and other health issues. As well as plain old aging. It’s exhausting and time consuming. I retired early after flexible hours at work weren’t enough.
The thing is, when my 3 brothers come visit or her grandkids are here she perks up and is suddenly much more capable of taking care of herself. They have no idea how hard I work to take care of her and a lot of it is because whenever they’re here to help, she doesn’t appear to need much help.
I know she’s excited to see them, but I can’t help but feeling angry about it. If she doesn’t need their help, why does she need mine? When they’re here they don’t need to lift a finger, but as soon as they’ve gone she needs me to do everything for her again. I wish I could get them to stay longer so they could see what it’s really like, but why would they take FMLA time to stay with her when she says she’s fine and she seems fine whenever they are here?
It’s so frustrating and I’m so angry about it, but then I just feel awful for feeling that way. What’s wrong with me!?
October 25, 2016 at 2:43 pm #56137
That sounds like a really frustrating situation. There’s nothing wrong with you.
It’s normal for people to feel better when they’re excited and be able to push through and do more than usual for a few days. I know my grandmother’s abilities can vary dramatically from day to day and week to week. I’ve found that family members often prefer for daughters to take care of them, so she may be more self-sufficient to avoid having her sons help her. It’s not fair, but it’s common.
The way you feel is completely normal and justified. You’ve said you aren’t going to let your anger impact your mom’s care.
That means the only problem is how you react to your anger. Feeling angry — or any other negative emotion — is a healthy part of life as long as it isn’t causing problems for you. It doesn’t say anything about who you are as a person. You’re making big sacrifices for your mom — that’s what says a lot about how generous and caring you are.
When you’re upset, what helps you find your center again? I know it can feel impossible to get 5 minutes to yourself, but most people can be safely left alone for short periods. When you’re feeling angry it’s better to step out and clear your head than to stay and feel worse.
October 27, 2016 at 6:11 pm #56224
I have the same experience in my situation. I don’t know that anger has come into the situation, but certainly frustration does. My wife definitely prefers her daughter help her with certain chores and it is actually okay because it allows them both to have real time together. Her daughter is a medical student now and she is learning the very real hands on issues facing nurses on the job. But I notice when certain family friends or church members show up, my wife is very energetic and active and much more interactive. But I would agree with Cori on the asking guys for help. My wife is more open about her issues with female visitors than male. And one side effect of visitors on an invalid is that with all the energy they burn through during visits by people, they tend to overexert so when the visitors leave, they kind of run out of energy and are much more needy. Once I realized this, I decided to stop feeling so frustrated, because although the visits definitely take their toll, my wife really enjoys herself and she needs to have those times when she can be herself with friends. So now I make my efforts to help her afterward my gift to her extra happiness at those visits. She tends to want to rehash the conversations and the events which tells me she is savoring the experience. One final thought on this. We need time for ourselves as caregivers. Cori was right in suggesting you take short breaks. You need to. Otherwise you can become very stressed and that is where your health problems will start. Stress and frustration and stuffed anger spin off a lot of other issues emotionally and physically. So try to adjust your schedule with your mom and work out the me time for yourself.
October 28, 2016 at 4:51 pm #56253
Thank you for posting this! I feel ashamed that I’ve experienced so much anger during my husband’s battle with lung cancer. I took care of him night and day for years. His adult children didn’t see any of this. They were spared all of the details. With me he was terribly weak and ill, but then he’d be cheerfully talking on the phone about how he was just fine. I know he wanted to save face and appear strong, but I really resented it at times.
November 8, 2016 at 6:25 pm #56831
Don’t beat yourself up. My husband I live with my 92 year old father. We retired early and moved back to our home state to help him. My sister lived out of state as well and still had children in school, so there wasn’t anything she could do.
In the beginning it wasn’t too bad… he was still pretty independent and could drive etc… But we didn’t go anywhere for more than a couple of days. Last summer he had a heart attack and then a fall….he still was self sufficient but we no longer went anywhere for fear of him getting ill.
This summer after a hospitalization for pneumonia his mental capacity slid dramatically now he can no longer drive… So we make sure we get him to the mall for his walks daily and take him to all doctor appts etc.
But he is absolutely miserable and I understand, he has lost his independence.. but…. he’s just ugly, never has a nice thing to say to me. But when my sister or her kids come he’s Mr Congeniality. I try not to take it all to heart but it’s hard.
You are only human…and you can hurt too. I think if people are honest a lot of us caregivers go through this.
November 8, 2016 at 6:44 pm #56832
Your situation brought back so many memories of how I felt while caring for my mother for 10 years. I have one brother; he did not understand how I could feel so stressed about her dementia. Why I needed a day or 2 away at times. She was always happy, “with it” and seemed fine when he visited every month for an afternoon. He missed the anger, the pouting, the fears she exhibited at night, the nightly wandering, the hallucinations, etc. I was angry at her when she exhibited her best side while he visited, then felt guilty about it. I realize it is normal to have had those feelings, I know my brother had a job and a family, but…it all left me feeling so alone. She passed 6 years ago, my brother and I are still close, but I so wish he could have understood what I had to endure.
November 8, 2016 at 8:54 pm #56833
Barbara Lang, they do tend to put on a good front out of the house, and when people come to see them, don’t they? I took my mom to the lawyer for a legal matter just in the knick of time – she was starting to get really demented, but that day she was a bright as a new penny and chipper and talky as can be. Luckily, it went well! And it’s so maddening when the distant relatives call up and say, ‘so how is she? How is she? How is she?’ and if you dare say anything other than, ‘oh, doing OK, she’s in pretty good health’….if you speak the truth about the hallucinations, the falls, the food that burned up the microwave, the weird phone calls all hours of the day and night, and of course the taking a huge dump in the middle of the floor (‘the dog did that’ – and of course there is no dog) – there is that long, shocked silence…..But when they get there, it’s all sentimental trips down memory lane looking at pictures, smiles and hugs all around, an exciting trip to the diner! – and then, ‘goodbye, sweetheart, see you next month!
November 15, 2016 at 2:17 pm #57101
Sounds so familiar. I do get angry when I do so much and get so little help or appreciation. But then I stop and think about why I’m doing this. I don’t want mom in a nursing home. We tried that and it was a nightmare. So the best thing I can do is my best. Some days that means gritting my teeth and keeping my words to myself(or yelling in the basement, lol). There are gonna be bad days. Period. Just work through them in your own way. It is a phase of our lives. But just one phase. Hang in there and talk alot. It helps!
January 14, 2017 at 7:24 pm #60394
Hi, I’m Rosalind, and I care for my mother and brother (autism). Over the last 3 months, Mom has confused me for an aide. It was occasional at first and I didn’t pay much mind since she had an infection. After a procedure, her spirits were better, but the confusion was almost daily. Sometimes I am the aide in the morning, and her daughter at night. Or it would be 2 days before she recognizes me. Or she is fine for days, and would just ask “is that aide coming?” All the other relatives/neighbors and my brother – no problem. It’s only me this happens with.
The biggest concern now is Mom feels the “aide” is stealing. She has misplaced some items, and is frustrated and paranoid about her papers. (One night she woke me at midnight to open her strongbox. Said she couldn’t sleep unless she checked her items.) So when Mom’s in “your the aide” mode, money or anything relating to the home is off limits. If she doesn’t recognize me at night she demands to know when is her daughter coming home, and once woke me up in the middle of the night demanding to know “why are you in my daughter’s bed”.
When she questions me (as the aide) I try to keep things short and basic. I’d hoped her doctor would admit her at her last visit, but not yet. (Mom has other issues to address.) I keep my house keys in my pocket at all times and my phone near me in case she tries to lock me out. (If she does try I will not feel bad calling 911 and taking her to the hospital-I’m that ready.)As others have done, I had to give up my full time job. Trying to work from home, but when Mom is in “aide” mode she yells “you shouldn’t be using my daughter’s computer”. When it gets really bad, I run errands, or just stay in my office away from her. I love my mom, but not knowing who she’ll think I am is too much and not safe for either of us.
Caring for my brother is a breeze. Fortunately he is healthy, and has a stable dayhab program.
January 16, 2017 at 11:07 am #60443
Rosalind, I totally relate to your experience!
My grandmother is the same way, sometimes to hilarious effect. I’ll be different people in the span of an hour. There’s not much you can do about it, other than go along with it and try to keep her calm.
My grandmother also can’t recognize things, so she’ll ask for something and then insist that I’ve brought her the wrong thing, even when it’s clearly right. Once again, not much to do. I’ll distract her and bring it back out after and see if it works. She panics because she wants to go home, although she’s in the only house she’s ever lived in. She believes she’s somewhere else. If she gets upset enough we’ll take her around the block or out for lunch and usually it’ll calm her down for a bit.
I get the same thing — working from my grandmother’s house means she’s screaming at me the whole time. She’ll tell the hospice nurses I’ve left her alone all day when I was there the whole time. She expects me to give her my undivided attention and clean the house all day. Now that she’s forgotten who my parents are they get it, too. The answer for us was to install a motion sensor camera so whoever is on grandma duty can watch her from next door and still be able to keep an eye on her. We’re only a minute away so any time she stirs we’re there in a flash, but can actually get some work done.
I don’t know if any of this will be helpful, but maybe other people can chime in on how they manage it.
January 16, 2017 at 9:38 pm #60462
Cori, thanks for the support. It’s nice to know I’m not alone. What scares me is if it comes to Mom trying to do something. Every morning I pray she recognizes me before I wake her for breakfast. If she does, bullet dodged.