Caregivers and Stress

JustLovelyJenn · 04-03-2015, 09:38 PM

Today was such a hard day. I am so emotionally spent. Its hard to keep it together by the end of the day when things go this way.

I know... I'm a mom, kids have bad days... I get it. But I'm not just a mom... I'm an AUTISTIC MOM. That means I'm part mom, part caregiver, part behavior specialist, part psychologist, part special education teacher, part mediator, part enforcer...

Today I took my kids to swim at the YMCA, like we do every Friday. My son broke his goggles recently. He doesn't have a new pair yet. Well, today the Y didn't have a loaner pair. So he stood and waited for someone to return a pair, he tried to fix a broken pair, he hovered by the stairs watching for another pair to appear, and finally... he started harassing the kids who got to them first to find out when they would be done with them so he could have them. We talked about it, I reminded him that Easter was soon and he got all his summer toys in his basket so he might get a pair then. I gave directions for him to do something else and finally I gave an ultimatum that if he couldn't play and stop bothering people he would have to leave. He refused. He was totally fixated on the goggles and nothing else existed. Finally after almost 20 minutes of trying to get him back on track I told him we needed to go change and grandma would come and get him. That he could try again on Wednesday. He started SCREAMING... he screamed and threw a tantrum loud enough that the Y attendant came and shut the door to the family room. I know I had other parents looking at us and wondering why I was letting my child behave this way. It took an addition 20 minutes of him screaming and crying and pulling at me and refusing... to get him out of the building and into his grandmothers waiting van (my daughter was still inside playing). That last few steps out the door as I am standing behind him pushing him forward a gentleman opened the door and held it for me with an understanding look. I almost broke down in tears on the spot.

He hasn't had meltdowns like this in a long time. I know things have been harder for him lately, and we are dealing with med changes again. But its physically and emotionally exhausting to have to calmly try and convince someone who is being so aggressive to do what you need them to do. Especially because he's not a little boy any more. I can't move him, or restrain him on my own. If he doesn't go willingly, I'm stuck. He's always sorry after, he just can't control himself in that moment.

I really need a break.

Cailin · 04-08-2015, 09:25 PM

Flomax is a prescription that basically helps someone urinate.. and in some cases, urinate frequently.

My client has a prescription and he quite often makes funny quips about Flomax

One day he said (in his South African accent, which adds to the humor for me) "I thought of a new curse," he said. "Oh yea, what's that?". He goes "May you ever have to take Flomax"

So today, city workers were outside cause a major raucous (he likes his quiet.. he calls the police on barking dogs). He says "When they get off work, they should all have to take 20 Flomax's each"

smh.

Kelt · 04-14-2015, 09:54 PM

We'll see how this works posting from my phone, please forgive any errors.

Today I pulled the plug on my father for the second time. As I mentioned in a previous post, a couple of months ago when all of this started I signed him off to hospice and had his IV removed, and then he went and woke up.

It's been two horrible months in a nursing home. He is basically starving himself, and now he is at a state where he just sort of fades in and out of consciousness. A little while back I put him in hospice care and three days ago I took him off of all medications other than pain and anxiety. (It's not like he needs his blood pressure meds now). About a week and a half ago, he was having a hard time breathing but his blood oxygen was still staying high enough. At the time I had to make the decision to give him a little extra oxygen just as a comfort measure, not to be sustaining, so that he wouldn't have to work so hard. Now that some time has gone by, and he hasn't had even fluids for four days I've decided to remove the oxygen just in case it is now acting as an artificial support.

I feel like I live in a barbaric country, there is no way anyone could ever consider this humane, he looks like something straight out of a concentration camp. This is tearing my mother to pieces, and it's not doing me any good either. If this is how nature takes it's course with a stroke victim, shouldn't we be humane enough with all of our medical advances to help them just a little at the end? Rhetorical question of course.

I would, (and could), treat a dog better.

(If anyone is wondering, all of the attorneys carefully crafted words can't help in this situation, the paperwork is in order to prevent this from happening, yet it is.)

I had planned to drive home last Saturday and I am getting to the point where I really will not be able to stay here much past tomorrow as I have kept pushing off my own obligations at home. Today was especially fun, I got to take my mother to the funeral home so that we could fill out all of the paperwork and pay for the things we are going to have done in advance since she can't deal with it by herself if for some reason I cannot be here long enough.

Mother is a whole other story entirely, and I won't go into it today. Suffice to say, my ideas of what kind of help she needs going forward are changing the more time I spend with her. I'm trying not to kill her about nine times a day, but it just isn't her fault. She really is that confused.

I'm afraid this is a jumbled mess, but trying to do this on the phone isn't working. I'll wait until I get home to post more. Thanks for listening.

04-03-2015, 09:38 PM	#1
JustLovelyJenn Senior Member How Do You Identify?: Femme Preferred Pronoun?: She/her Relationship Status: That's Need to Know Join Date: Nov 2009 Location: Aberdeen, WA Posts: 4,478 My Photo Gallery Thanks: 12,464 Thanked 13,991 Times in 3,684 Posts Rep Power: 21474856	Today was such a hard day. I am so emotionally spent. Its hard to keep it together by the end of the day when things go this way. I know... I'm a mom, kids have bad days... I get it. But I'm not just a mom... I'm an AUTISTIC MOM. That means I'm part mom, part caregiver, part behavior specialist, part psychologist, part special education teacher, part mediator, part enforcer... Today I took my kids to swim at the YMCA, like we do every Friday. My son broke his goggles recently. He doesn't have a new pair yet. Well, today the Y didn't have a loaner pair. So he stood and waited for someone to return a pair, he tried to fix a broken pair, he hovered by the stairs watching for another pair to appear, and finally... he started harassing the kids who got to them first to find out when they would be done with them so he could have them. We talked about it, I reminded him that Easter was soon and he got all his summer toys in his basket so he might get a pair then. I gave directions for him to do something else and finally I gave an ultimatum that if he couldn't play and stop bothering people he would have to leave. He refused. He was totally fixated on the goggles and nothing else existed. Finally after almost 20 minutes of trying to get him back on track I told him we needed to go change and grandma would come and get him. That he could try again on Wednesday. He started SCREAMING... he screamed and threw a tantrum loud enough that the Y attendant came and shut the door to the family room. I know I had other parents looking at us and wondering why I was letting my child behave this way. It took an addition 20 minutes of him screaming and crying and pulling at me and refusing... to get him out of the building and into his grandmothers waiting van (my daughter was still inside playing). That last few steps out the door as I am standing behind him pushing him forward a gentleman opened the door and held it for me with an understanding look. I almost broke down in tears on the spot. He hasn't had meltdowns like this in a long time. I know things have been harder for him lately, and we are dealing with med changes again. But its physically and emotionally exhausting to have to calmly try and convince someone who is being so aggressive to do what you need them to do. Especially because he's not a little boy any more. I can't move him, or restrain him on my own. If he doesn't go willingly, I'm stuck. He's always sorry after, he just can't control himself in that moment. I really need a break. __________________ --Jenn Last edited by JustLovelyJenn; 04-03-2015 at 09:41 PM. Reason: i forgot something

04-08-2015, 09:25 PM	#2
Cailin Member How Do You Identify?: Female.. and it's pronounced "cah-leen", not cay-lin Preferred Pronoun?: You Relationship Status: In one Join Date: Feb 2012 Location: Texas Posts: 872 My Photo Gallery Thanks: 979 Thanked 2,630 Times in 739 Posts Rep Power: 15791749	Flomax is a prescription that basically helps someone urinate.. and in some cases, urinate frequently. My client has a prescription and he quite often makes funny quips about Flomax One day he said (in his South African accent, which adds to the humor for me) "I thought of a new curse," he said. "Oh yea, what's that?". He goes "May you ever have to take Flomax" So today, city workers were outside cause a major raucous (he likes his quiet.. he calls the police on barking dogs). He says "When they get off work, they should all have to take 20 Flomax's each" smh. __________________ De reir a cheile a thogtar na caisleain

04-14-2015, 09:54 PM	#3
Kelt Senior Member How Do You Identify?: Beach Butch Join Date: Oct 2010 Location: SoCal Posts: 2,751 My Photo Gallery Thanks: 19,765 Thanked 15,279 Times in 2,538 Posts Rep Power: 21474852	Trigger Warning: Dying We'll see how this works posting from my phone, please forgive any errors. Today I pulled the plug on my father for the second time. As I mentioned in a previous post, a couple of months ago when all of this started I signed him off to hospice and had his IV removed, and then he went and woke up. It's been two horrible months in a nursing home. He is basically starving himself, and now he is at a state where he just sort of fades in and out of consciousness. A little while back I put him in hospice care and three days ago I took him off of all medications other than pain and anxiety. (It's not like he needs his blood pressure meds now). About a week and a half ago, he was having a hard time breathing but his blood oxygen was still staying high enough. At the time I had to make the decision to give him a little extra oxygen just as a comfort measure, not to be sustaining, so that he wouldn't have to work so hard. Now that some time has gone by, and he hasn't had even fluids for four days I've decided to remove the oxygen just in case it is now acting as an artificial support. I feel like I live in a barbaric country, there is no way anyone could ever consider this humane, he looks like something straight out of a concentration camp. This is tearing my mother to pieces, and it's not doing me any good either. If this is how nature takes it's course with a stroke victim, shouldn't we be humane enough with all of our medical advances to help them just a little at the end? Rhetorical question of course. I would, (and could), treat a dog better. (If anyone is wondering, all of the attorneys carefully crafted words can't help in this situation, the paperwork is in order to prevent this from happening, yet it is.) I had planned to drive home last Saturday and I am getting to the point where I really will not be able to stay here much past tomorrow as I have kept pushing off my own obligations at home. Today was especially fun, I got to take my mother to the funeral home so that we could fill out all of the paperwork and pay for the things we are going to have done in advance since she can't deal with it by herself if for some reason I cannot be here long enough. Mother is a whole other story entirely, and I won't go into it today. Suffice to say, my ideas of what kind of help she needs going forward are changing the more time I spend with her. I'm trying not to kill her about nine times a day, but it just isn't her fault. She really is that confused. I'm afraid this is a jumbled mess, but trying to do this on the phone isn't working. I'll wait until I get home to post more. Thanks for listening.