Caregivers and Stress

[JustLovelyJenn]

I have never really thought about the fact that I act as a caregiver until recently, when a specialist we were seeing suggested I might look into getting a caregiver to help give me a break.... I have a 9 year old son with high functioning Autism Spectrum Disorder, ADHD, and an impulse control disorder.

Its a lot of work, and a whole lot of stress... I am just going to follow along for now.

[TruTexan]

I just had some ideas Dee:
what if you talked with your mom and designated certain days she can come over and you two can play board games or card games together or regular dominoes? Maybe you can set up a few days a week that you can get your mom to start playing those games with you and in time, if she enjoys it, then you can ease her into going out to the local community center to play them with others her age group?

Or get her to volunteer with meals on wheels. If she doesn't drive she might be able to get someone in the area that does this, to pick her up and she can help prepare meals or even deliver food with someone, for those that need it.??
Just a couple Ideas that I hope might work for ya.

[Redsunflower]

I wanted to send out some hugs to all the carers around here just now.

[TruTexan]

I"m lucky my mom still does things on her own without me. She's pretty independent in that regard to getting around and doing stuff . I do however have to drive her to doctor appts out of town, she becomes a nervous wreck when in major traffic or going long distances. I take care of her needs when things with the home are concerned, if she needs anything personal and cannot afford it, mom comes first for me. I am the only one here that is willing to stay here and help her when she needs someone. My older sister lives 5 hrs away and is stubborn and hardly even calls mom anymore. My younger sister lives in TN and takes care of everything else mom needs such as roofing materials I need to put on the house to stop leaks, etc, and any major stuff like that that I cannot afford to do, but I do the labor work in return. I work to keep mom's car up to date and check it all the time, change the oil, tune it up, rotate the tires, etc. I just went through an ordeal with her losing all her major benefits and getting them reinstated. Finally, they seem to be alright for now, but we'll see come next month if they get screwed up again. Geeze I hope not. That was a nightmare to take care of. Anywho, I do what I do for my mom because she's the only mom I have and I love her, but I just can't live with her. We don't get along in that regard living together. Mom has OCD really bad and anything I do like wear socks or shoes in the house drives her mad crazy and she just loses it. LOL, so I live 15 miles from her, and keep my own sanity, and give her her own space she needs. It's best this way.

[Redsunflower]

Thank you for the welcome TruTexan.

Everything you describe sounds so familiar to me, I read your posts about the benefits mistake, I feel like I'm reliving all that frustration just hearing about your situation. Keeping calm and continually doing what needs done, in addition to all your own stuff, is not easy.

Keeping her car ok, I used to wonder why I did that for my ex when she didn't drive it for years but I did it anyway, the hospital appointments, always so many of them, one of the good things about all my ex's stays in hospital was that at least I didn't have to keep driving her there, how messed up is that?

Sounds like you and your mum living apart is a more manageable arrangement for you, that's great, you need your space.

As for the guilt...there's a conversation or 10 I need to have with my therapist.

Thanks for a great thread, I'll keep dropping by.

xx

[TruTexan]

I know that being a caregiver causes a lot of stress on each ourselves, we just have to remember that all of us need time to ourselves and sometimes therapy to cope with things that we are living with doing for our loved ones. I hope if any of you are feeling overwhelmed, that you seek out a therapist that you can trust to help you cope.
I know I had to after my stepfather died and I got the brunt end of mom's anger issues with losing him. It was aweful hateful on me and I about lost my sanity until I sought out help from my psych. doc that set me up to see a therapist so I could learn new coping skills to deal with my mom and her behavior towards me. It's better now that I don't live with her. At least now I can just get in my truck and go home to get away from her anger issues and yelling at me for things beyond my control or hers. She gets in moods where she's so angry and bitter about her life and how hard it is on her to survive and the loss of my stepfather and his help. I understand it but it doesn't make it right for me to have to be mom's target. It makes me nuts when she does that stuff. So now I just get in my truck and leave and go home to my own peace and serenity here in my little apt. just 15 miles from her.
Makes me sad that I have to do that, but I cannot be that target for her anymore.
I learned not to have any guilt about leaving her when she' s so angry and going home. It used to tear me up inside, but now I do not let it get to me that way anymore.

Keep coming back Redsunflower. Thanks for your input and story.

[Medusa]

I am the primary health advocate for my Pops.

We spent several years playing tug-o-war with one another about his health. Him refusing to get treatment and me getting angry, sad, resentful, hurt, anguished, and every manner of feeling in between. He agreed to get treatment back in August and we have spent the last few months going through various VA programs, getting him registered, getting his diagnosis, and rebuilding the tiny part of our relationship that suffered for the last few years.

This might be unfair but my stress level dropped 100 points when he walked in to the VA for the first time. Just knowing that he was willing to try. Willing to hope. Willing to take value of his life. Willing to WANT to be around for me, my Sister, his grandchildren.

It's still hard. Re-arranging my schedule at work has been blessedly easy due to having an amazingly good unit administrator but the VA is 35 miles each direction and it's a lot of driving.

He has 6 appointments scheduled so far for January and more will be coming.

The bright spot with all of that driving is that we get 2 hours of time with one another to chit-chat and shoot the shit, catch up on family business, and basically just love on one another.

I am getting to be the parent right now. Instead of it being really stressful anymore, I have found it joyous and such a deep blessing that I probably will label this past year with my Pops as some of the sweetest time we have ever spent with one another. I know it won't always be this easy and that it will be harder as we go on but right now, I'm just grateful for the tiny little miracles.

Peace and blessings to everyone in this thread going through the hard stuff with parents. Hug them hard and remember to be kind to yourself as well. <3

[TruTexan]

Medusa, great post by the way. I'm so glad your dad has you to help take care of him and that he is making the true effort to take better care of his health. I hope it all gets better for his health from today on. Good to see you posting here. Keep coming back.

[girl_dee]

Originally Posted by TruTexan

I just had some ideas Dee:
what if you talked with your mom and designated certain days she can come over and you two can play board games or card games together or regular dominoes? Maybe you can set up a few days a week that you can get your mom to start playing those games with you and in time, if she enjoys it, then you can ease her into going out to the local community center to play them with others her age group?

Or get her to volunteer with meals on wheels. If she doesn't drive she might be able to get someone in the area that does this, to pick her up and she can help prepare meals or even deliver food with someone, for those that need it.??
Just a couple Ideas that I hope might work for ya.

Thank you for the suggestions. i'm working on getting some sort of pattern going with her.

[girl_dee]

tonite my mom and i were invited to a friends birthday party. She really likes this lady and wanted to go. it was for 6:30.

At 3:30 she started stressing about when we were leaving. Then it started raining so she was stressing about that. Frantic even. My mother has been deathly afraid of bad weather since i was a kid, (like hide in the bathroom with a flashlight and a radio until it stops raining) .... we finally left and she was chattering about how bad things are, and the rain OMG if it doesn't stop raining and why did we go out and the restaraunt had nothing she wanted so she didn't eat, she wouldn't touch the napkin because she may get a rash, sooooo she just sat there not eating... and it was too cold and the people were too loud and the little kids were being mean to each other (being normal) and and and...

Then when we left she wanted to stop and get something to eat.

my poor mom just cannot relax, she jumps out of her skin for just about everything and at times she feels like a complete stranger.

i was a bit stressed out when we got there after all that but then i just let it go and said screw it and had a great time.

[Redsunflower]

Originally Posted by girl_dee

i was a bit stressed out when we got there after all that but then i just let it go and said screw it and had a great time.

Well done for getting through all the stress stuff and managing to have a good time anyway, it's much easier said than done.
:-)

[JustLovelyJenn]

Has anyone every had to fight to get proper care for their loved one... whether in a home or a school? I fear this is the path I am headed down right now, and I am not sure how much of a fight its worth... Or how much of a fight I can handle.

My son is in 4th grade... he has severe behavior needs due to autism, adhd, and an impulse disorder... and I found out this last week that they are restraining him unneccessarily, and doing it improperly at that. I don't know how much of a fight this is going to be... and I am wondering if it will even be worth it, or if I should just find somewhere else for him to go to school...

[Redsunflower]

Originally Posted by JustLovelyJenn

Has anyone every had to fight to get proper care for their loved one... whether in a home or a school? I fear this is the path I am headed down right now, and I am not sure how much of a fight its worth... Or how much of a fight I can handle.

My son is in 4th grade... he has severe behavior needs due to autism, adhd, and an impulse disorder... and I found out this last week that they are restraining him unneccessarily, and doing it improperly at that. I don't know how much of a fight this is going to be... and I am wondering if it will even be worth it, or if I should just find somewhere else for him to go to school...

Hi there JustLovelyJenn

So sorry to hear you're having a difficult time with your son's school. How difficult for you, and him. I'm not sure how much help I can be; I live in Britain and I'm guessing you're in the states. However, if you lived here, this is what would happen.

An educational psychologist would be involved who has a good understanding of the educational needs of children with adhd, asd and associated behavioural difficulties. They would co-ordinate a consistent approach, in consultation with yourself, and follow this up throughout your child's schooling. Does his school have one of those?

Failing that, you could go back to the psychologist that diagnosed him. If he's on meds you may have contact with that person anyway, and ask them to help by contacting the school.

If it's all too much and nobody is listening, in Britain you could contact a social worker to fight those battles for you.

It's all so stressful but will be so worth it once your son is more settled. Best of luck with it and let me know how you get on.

Rxx

[girl_dee]

Originally Posted by JustLovelyJenn

I have never really thought about the fact that I act as a caregiver until recently, when a specialist we were seeing suggested I might look into getting a caregiver to help give me a break.... I have a 9 year old son with high functioning Autism Spectrum Disorder, ADHD, and an impulse control disorder.

Its a lot of work, and a whole lot of stress... I am just going to follow along for now.

i was hoping some that are taking care of young folks would chime in. Sometimes i don't think those who do give themselves credit. It's stressful caring for a healthy child, it must be completely overwhelming (however rewarding) taking care of a high needs child.

you get to feel tired and stressed out when it happens!