Sick of being a care giver

Post Reply New Topic

I'm just so tired and sick of being the one who takes care of everybody. We're stuck with my old grandma for 9 years. She's getting really old and I've been taking her to hospital everyday for therapy last week. My mom's in town and agreed to take her tomorrow. Then she asked so many questions I almost told her to just drop it. I hate talking, especially to her. She called again later and told me she's so busy she won't be able to send grandma back, so she'll take her to see doctor, but I need to go pick her up after.

I just wanna cry. It's a long and stressful week. I'm so tired. Didn't have a good sleep for many days and didn't have much fun at all. DH worked overtime everyday in the last two weeks and need to work this weekend, too. All I have to look forward to is grocery shopping. Nobody cares that I'm autistic and can't even stand talking to people. They expect me to do everything "normal" people do plus more. We're supporting grandma financially as well as physically. She drive me nuts as we have nothing in common, never got along well, and now her mind is going and often talks nonsense. She doesn't eat the same kind of food my family eat so I often need to cook separately for her, as well as making stuff my kids can eat, due to their food allergies and sensory issues. She doesn't even drink the same kind of water. I'm sick of this situation, but I never said anything to her. I always told her she's welcome to stay for as long as she wants to. Sometimes I wonder if I'm unlucky because I'm her 13th grandchild.

I wonder if it's just me, or do other AS people have trouble with being a care giver, too? Is it hard because is IS hard, or just because I'm an anti-social aspie?

Being a caregiver is hard. Being an AS caregiver moreso.

My wife spent two months in the ICU, and a month at the Rehabilitation Institute after that. I was a jerk the whole time. If it wasn't for a friend of ours who was staying with us at the time, I would have been much worse (this friend ran interference for me with everybody else so I could focus on managing my wife's health situation; I was still a jerk, just less of one than I would have been otherwise). You can read about it on her blog at offthemap.eu.

Even though things are much improved these days, I have basically been her caregiver for the past ten years. Before that, we were both taking care of my father who was dying from cancer. I used to make music, read books, play video games, and genally "have fun" once in a while before all of this happened, but I have essentially forgotten how to do any of that in the intervening years. Not being able to feed one's Special Interest-- indeed, losing touch with all of one's Special Interests of any kind -- really takes its toll on the soul of an Aspie. It always feels as if there are more urgent things that I have to manage instead, and we don't even have any children (fortunately). I cannot imagine how you keep it together.

My wife finds time to feed her own interests (making art, planning trips, visiting friends, etc.). To her credit, she is much better at taking care of herself in that regard than I am. Sometimes, though, I do resent her "having a good time" (by any definition) while it feels to me as though all I do is manage the sh_tty aspects of our life. When do I get a break? It's hard, to say the least.

I find some solace in our animals (though care-taking of them is sometimes a chore, too), and I tend to go to bed early these days. I don't really have any advice for you, unfortunately -- not that you were asking! -- but just wanted to let you know that you are not alone, and having AS makes it much much harder for us than it does for the NTs who do not become exhausted by things like the endless small talk required for interacting with the rest of the world.

It is very hard for anybody giving care, It is hard work, very stressful and emotionally draining.
Worse care givers are seriously underrated.
It is essential you get some help wherever you can, you need to have time for yourself you need someone who can take over when you need a break. I don't know the situation in Canada but here in the UK we have several charity's that provide such a service for carers.

I wish you luck and hope very much you get assistance.

Sis and I were carers for Mom (Alzheimer's). I hope you won't think I'm being silly or disrespectful - we did not buy a copy of the Alzheimer's for Dummies book. I've since discovered much in that book that would have helped us so much at the time. There are others: Eldercare for Dummies etc.

One of the big problems is family dynamics. Another is community support. I hope that you could improve your situation - and yes, you must think of yourself.

The older my mother got, the more she wanted only her daughters to help her. That's a terrible trap - please get all the advice you can.

Agreed.
get all the advice u get can your hands on.

and find time for you. If u do find time for you it will make things better for others as well because spending time on yourself will make you a better person to be around.

i would also not like to be a caretaker.

Sounds like a very difficult situation. If I were you (depending on your financial situation) I'd either get her an in-home (at least part-time) caretaker or arrange for her to live in a nursing home. I'd talk with your other relatives about how to financially arrange it.

But the little bit I've been a "caretaker" vs. the one being cared for I prefer being the caretaker in some situations.

Thank you for the kind words! It means a lot to know I'm not alone. As an update, my mom didn't take grandma to hospital today. She said she had to do shopping. Now I still have to take her myself, and skip my own grocery shopping. Isn't it wonderful to have family who always drag you down? I hope I don't explode at her (mom) next time I talk to her.

I'd just ditch her. If she is nothing but a burden and you don't like her then get gone. Good bye gramma

Caregiving is extrordinarily draining, even for normal folks. For people who have problems with social interaction and become overwhelmed easily, it's a nightmare. I do terribly in those situations and make everyone around me suffer, so I try to stay out of them as much as possible, but even that has to be moderated otherwise everything is pushed off onto someone else. It sounds like your mother is frankly shirking her responsibility to her own mother in this case and it's very unfair, both to you and to your grandmother.

That said, there are usually volunteer groups or public health options available to help people who are in these situations. Is your grandmother a member of a religious community? Sometimes the ladies from the church or temple can offer some assistance, like the shuttle service to the doctor's appointments or fixing some meals or simply visiting with her so you can get out and take care of yourself from time to time. Most religious communities have some sort of shut-in ministry. You could also ask at the doctor's office about secular assistance through volunteer groups or to see if her insurance would cover some sort of home-health option. They may have to refer you to another party, like a hospital social worker, but they can usually get you started in the right direction.

Just read back through your post -- if you are number 13, where the heck are the other 12 during all of this? Not to mention their parents? Sounds like it's time to call a family meeting and tell them to get off their lazy tail-ends and stop leaving all the heavy lifting to you! Set up a rotation schedule for helping out with Grandma and hold them to it.

Thank you for the sympathy! My grandma is my dad's mother, so my mom never got along with her. Everybody else is in China, except my parents who are in US and my brother who's in Canada. They got grandma to Canada so she can have free health care and social benefit, but then everybody left Canada and we got stuck with grandma.

I am hoping that she'll eventually go to her daughters in China. But she won't have any health care there. At age 91 that's a big concern. My parents keep telling her if she ends up with a huge hospital bill they won't pay for it. My only hope is for my brother to get a better job so grandma will go live with him. She'd vastly prefer him over me, if he can afford a decent place to live. He's also an Aspie and is always underemployed and quite poor. My parents help him here and there.

I guess I should be glad we're not taking in my brother as well. That'll be a nightmare. I'll take care of grandma as best as I can, and consider that the most charitable thing I do in my life. Then we'll not make such a mistake again.

You may not have her for much longer- sorry to sound like so much doom and gloom, but statistics are not on her side at such an advanced age. I know it must be frustrating, but try to hang in there because you will miss her when she is gone. If you know you did everything you could to keep her comfortable and healthy in her last years, it will make it easier to move on. Otherwise, you may feel a bit guilty, if you know what I mean.

I am not chastising you- hope it doesn't sound like that- you should vent here all you want because it helps keep you from snapping at others in the home. At least I hope it does.