Exhaustion and Gratitude


Exhaustion and Gratitude

800px-Flat_TireI've been trying to figure out what to write since I joined this group. I've been reading what others have written, the questions others have asked, exploring the forums to see what others are discussing - and relating to all of it.

I could write something flowery and positive, or inspirational for my first post, but if we're honest, if everything were rainbows and lollipops we wouldn't be seeking out support in the first place.

My daughter is almost 22, and is entirely dependent on us. Physically she can take care of herself, but she won't unless I am on top of her prompting her to take care of her hygiene or her diet or safety etc. etc. etc. Even if I could get her to the point where I could leave her alone for short periods it's not possible because of the epilepsy. Because of this I can't work, so when Mom needed someone to take over her care I was experienced and available, and she moved in last October. I have already raised two other children, one who thankfully is through college already and one in his second year now.

Truth is, I'm tired. Sometimes exhausted. Sometimes I go on strike and refuse to do the dishes, or fold the laundry. Sometimes (more often than I like to admit) I refuse to cook, and my poor but understanding husband works his regular 10-hour days and then stops to bring dinner home. Sometimes I think I can't clean this mess us one more time or do one more load of laundry and I would really like to run away from it. Then I realize my husband and I just really need a break, overnight, with someone else waiting on us and no one yelling "Hey Mom" every 10 seconds, or "I'm hungry." Then I also realize it's not feasible, financially or logistically, while we're taking care of everyone else.

Sometimes I'm sad. I still have to deal with what my daughter can't do, and make decisions in no-win situations. I know the best thing for her is to work to get her into a residential setting where she can gain independence and confidence, and where I know she will be taken care of when I'm gone. Part of being sad is being afraid too, and a special-needs parents greatest fear is who will take care of their children when they're gone. I know it's best, but it will tear my heart out to let her go. Literally, I think she is a piece of my heart and I don't know how I will take it. And I'm sad watching mom become less and less independent. I took care of both her and my dad before he passed away, and I watched it happen after an awful stroke and two bleeds in his brain, and I don't know how I can go through watching something that again with mom.

Sometimes I am resentful. I have three brothers, all close enough to help. While I don't expect their wives to feel obligated to take care of their mother-in-law, I don't want to hear how badly they feel that they aren't. I'm resentful that everyone assumes the daughter is going to take care of everything every day because sons aren't going to do the "gross" stuff. I'm resentful that no one or agency has ever helped with care for my daughter so that I could work and have a little slice of life outside of caregiving and some modicum of financial stability. Sometimes I think I'll just go get a job and whatever happens, happens, I need to work for my own sanity. But I never do, it's just not feasible when people need you.

I am, however, grateful - that my daughter has come as far as she has, that I am available when she and Mom need me, that God gives me the strength and patience to get through every day and keep going. That in keeping me going He has made me stronger and brought my husband and me closer, and our relationship is stronger than it ever was after 29 years of marriage and all of the obstacles we have behind us. I am grateful that I have found this group, and discovered that there are people who understand instead of judge, and that no matter what comes up, I am not alone.

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I am in awe, Sandy, that you understand your emotions so well, that you can say why you feel the way you do. That is fabulous. You have done your homework and then some. Your serious and considerate post is welcome here, in addition to the ones that need a censor! Glad to have you in the Fold.


I just wanted to thank you all so much! I was nervous! :)


Sandy, thank you for sharing your story. You have a lot going on and you can depend on our support and encouragement. I like your idea of a residential setting for your daughter, we have those here in my town which is connected with our church denomination. You do have to pick and choose what you do during your day so you can get through! Dirty dishes or unfolded laundry are natural consequences of caregiving! I too look forward to reading more from you :)


Hi Sandy--If I were to offer a sample of what a first post could look like, this would be it!! It's perfect! We love the truth, which is where our flowers bloom. :)\r\n\r\nYour post reminded me of our Free Pass for Family Caregivers, which happened on Dec. 29. In essence, we gave ourselves a free pass from whatever feels like drudgery. Good for you for doing that when you need. Your sanity and your need for downtime are way more important than cooking and cleaning. \r\n\r\nI'm with John--so looking forward to more of your posts. And, I hope it felt better to just write it out.

John Parks-Coleman

Sandy, you are awesome! It CAN be frustrating, at times; however, it's also cathartic to write about it (and as well as you have). I look forward to reading more from you.