Emergency Emotional Support | Caregiver Action Network

Emergency Emotional Support

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Emergency Emotional Support

Thank you so much in advance for all the support I already feel that I am receiving just from joining a large group of fellow caregivers. Just a quick intro... I'm 25 and just moved in with my Aunt who was diagnosed with colon cancer in October. I feel very fortunate that I am able to adjust my life so easily to help her out and relieve a large amount of stress and worry from the rest of my family. I have a huge support group in my family and friends. But... when I continue to talk about my aunt to everyone I start to feel that my words are taken as me being overwhelmed or too stressed and complaining.... So I need a place to turn where my words will be just what they are (things that are constantly running through my mind) and will not make anyone think I'm in dire need of help. Today for instance my Aunt is having a very bad day and while home here I can vent online where she can't hear me like on the phone. In about twenty minutes we will head to the doctor's to have her chemo pump removed and receive fluids. I am wondering if anyone has heard of a support group that uses texting. That is something I can take everywhere with me and will not be noticed by anyone else. Please let me know if anyone has heard of such a resource. Thanks for the time and any thought out towards us!

Hi Keri,
Hi Keri, Welcome and vent away. Most people who have not done this don't really understand. It doesn't seem so bad until you live it.
LOL understand completely and
LOL understand completely and really if a person has not been a caregiver they will never understand.We no longer have normal conversations about weather, how the camping trip went or what you doing tomorrow. Between arranging doctors appointments,hospital vists or picking up meds our conversations are...range from good morning how you feeling,whats hurting to when was your last bowel movement! There is no site I know of for us to have instant messaging like text or even twitter for the alone time we actually have to talk or vent is always few and far between or late at night. But awesome concept something to think about which would be way cool!
Grammy2girls's picture
A place to be heard

I'm new here - my name is Debbie and I care for my husband who has Parkinson's Disease (PD). We've had a good run of ten plus years with no progression or very little but life has drastically changed in the last six months. Our life as we knew it is gone! Every day it's anyone's guess what kind of a day it will be from good - he can shower and dress himself to bad he can't and his blood pressure bottoms out so he falls. Lots of doctors visits and pharmacy runs. Trying to figure out what helps what doesn't and what else to try. I'm so very weary. This is very isolating and overwhelming. Everyone wants to help but how do you know what help to take? I think it's just what most people say. I do have a core set of people that I can turn to in difficult times but it's the day to day feelings that I left with - how can they fully understand what I, we, are going through? And yet I so desperately need someone to understand!!!  I'm really hoping this is a place I can find this.

NicholeGoble's picture
Hi Debbie - 

Hi Debbie - 

Welcome! Just wanted to say thank you for being here and sharing about some of the day-to-day difficulties that can come with caregiving. Isolation and loneliness are aspects of caregiving so many experience but it can be really hard to talk about. Hopefully this can be a place to connect with others to feel less isolated or alone, and find answers/guidance to questions. 

Regarding your question about knowing what help to take - a tip that has worked for me personally is to make lists. I never know how to respomd in the moment when someone asks me, "How can I help?" and making a list of things I feel comfortable asking someone to assist with has been great in giving me a response. 

Just something that has helped me. Hope othes chime in here with their thoughts and tips.

Welcome again, Debbie!


Amy Korn
In the same boat


My father has Parkinson's as well as a permanent catheter.

He lives in an assisted living facility with 24 hour care, yet I manage everythign for him.

He was in the hospital last month, followed by 2 weeks in rehab and since he has come back to AL facilty, he won't get back on the care routine that I have arranged for him.

It is very frustrating and overwhelming.

I say that you should take any and all help that is offered.



(((((((((((KeriAllison))))))))))))) I sometimes listen to music on the computer at night and browse the forums and/or post here. My husband thinks I'm listening to music... I understand the dilemma with talking on the phone. There are many ears here as well, and they latch on to one word or phrase and blow it out of the water. That's what happens when you have a big family with good hearing, I suppose... ;-) Welcome! Gaby
Welcome Keri!
Welcome Keri! Having an 'on the go' support network you could access via cell phone is an awesome idea! I know there are support forums who use email and email is accessible by phone but I don't know the name of any off-hand. But they're out there. I joined one after our original support network was shut down but the name of it escapes me. Try a Google search....

Anyone have experience with their LO being intermittently incontinent?  He doesn't have "accidents" outside of the bathroom, but he has frequent urine accidents near the toilet (before he gets his pants down) and bowel accidents that I think are the result of getting off the toilet before he is done.  Given that he is typically in the bathroom, I don't think depends would help.  At first it was one time a month, now he has had 5 bowel accidents in the last 2 weeks.    

I tried to stop his dairy intake but that didn't seem to help.  Tried to increase fiber intake, no change.  The neurologist said his stage of MCI should not be causing this but I am at wits end.  Anyone have any suggestions?