I Am Going

Denise

I Am Going

Denise

My younger sister, Julie, attended the Second Annual National Caregiving Conference in November 2017 to learn more caregiving and to support me.

We met on Twitter today for our #carechat, which happens every Tuesday. Today, we talked about our perspectives on help. At one point, today's host for our chat posted this question:

Where can we go for help?

I shared my answer:

I ask siblings for help (I just asked a brother yesterday). I often ask Google for help ("how do I...").

Another tweeter replied that I am fortunate, that she does not have that kind of support, that she wished she had that support because of hard it is for her without that support and that many don't have that kind of support.

I can't tell you how much this pissed me off.

I do realize how many family caregivers don't have help because I've been surveying family caregivers for the past 20 years and interacting with them daily since 1996. (I interacted with them regularly between 1990 and 1995.) What I provide here, for some, is the only support they receive which is why I do my best to be here so much. It's why I host events like our 36-Hour Christmas chat and give up so much of my holiday for the past five years to be available for others who need support.

I also didn't like feeling like I had to apologize because I have siblings who help. (I also have a sibling who lives five minutes from my parents and who flat out refuses to help or have a relationship with my parents much less with my siblings and myself.)

The more I stewed about this, the madder I got. I am single. When my parents have some awful episode happen, I face the gore on my own. I clean up the gore while comforting the other parent who witnessed the gore. And, then I go home to process what just happened on my own. Sure, I'll call my siblings with an update. But, I'm in it on my own. I'm standing in it on my own. I'm in the car getting there on my own. I am feeling it on my own.

I do have siblings who help and I call on them to help because it's the right thing to do. And, I deserve their help.

Please, if someone has something good happening for them during a caregiving situation, celebrate it. I'm happy when a fellow family caregiver has a spouse or an adult child or a best friend or a family member who helps. I would never begrudge them that support. We need to always celebrate the good that's happening for another during caregiving. We can't resent it and turn it into our own personal pity party. We can only know 1% of what another endures during the day. Let's make sure we don't make the other 99% any harder than it has to be.

So, when I tell you I ask my siblings for help, please simply say, "You go girl."

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LilMagill

That was an unfortunate response! No one should have to apologize for getting the help they need. It's good when we can recognize the strengths we have and not take them for granted

Goldie

I would have been angry, too. I have siblings and I keep them updated. Most of the time they're out of state or out of the country. Sometimes it's harder to deal with their issues with mom and dad than it is to do the caregiving. I have a husband who is a wonderful, wonderful support - unless I would ask him to do something directly with my parents. Go with me? fine. Take them to the doctor himself? not comfortable with it. So, I'm the one who mops things up, too. \r\n\r\nI hope I haven't done that TO anyone. I hope I have never resented anyone for having the help they need. I have to admit, I am not sure. I know I've had times when people have given me advice - good advice, but advice which would require me to have lots more money than I have or the assumption I have lots more family support than I have. If the advice giver was insistent, I probably growled back.\r\n\r\nWhen my parents first started having such a struggle and I, admittedly, was quite negative about the whole situation, my spouse reminded me HIS parents were no longer alive. I was lucky to still have my parents. I won't say what I felt like doing right then. My mother was in a psychotic episode and dad was calling me several times a day, saying, \"I need you\", then hanging up.

jan

Thanks, Denise, for your honest response here, as well as the reminder for all of us to stand together in support and victory. I have to admit, tho, that so often I fell into the same cyclical pointless mind-loop of this other caregiver; this doesn't work, so that doesn't work, so this won't work, and I'm back to where I started. It's a mind-trap of negativity and hopelessness. I recall it vividly! If there is ever a place to break out of that, it would be here, with other caregivers sharing their stories.

frogger16

Boy, that twitter sounds crippled in their own little world and unable to relate beyond that.\r\n\r\nI love this site.....it was and still is where a lot of my emotional support comes. This site is where I can find help, new options, learn better ways any hour of the day! I appreciate all that you have put into this site Denise. I appreciate all you do that goes beyond this site. You've created a life line for me and so many others. its AWESOME! and yes, you do deserve help & support & not apologize for receiving it.\r\n\r\nI love it when other family caregivers share how a family member, friend or even stranger gave them support or a random act of kindness that made their day better. It renews my hope, strengthens me in some way and opens the doors to new opportunities I may not have been aware of. Hearing others share about their support fuels a thankfull heart in me and gratitude I may have overlooked.\r\nAnyways, \"You Go Girl\"!