The Caregivers' Guilt Dumpster - Open for business

@joedeb
I am sorry! I know regret too—I don’t always meet my dad with positivity if he is complaining, etc, and then feel so guilty later. Sometimes I wake up in the middle of the night, thinking about how I could have said something better, or not said something, or had a nicer expression on my face. (Don’t misunderstand—no arguing, name calling, guilting him, yelling or anything even close to any of that. Just impatience on my face or snippiness in response to something he said in HIS humanness (yes, I need to extend grace to him too, as well as myself!). But you know what? We are HUMAN. Yes, our goal is perfect performance (and YES, the people we care for even deserve perfection). Walking in kindness and patience and all the fruits of the Spirit. But we are inevitably going to mess up. Now disrespect, abuse, etc is never never ok. But what you spoke of, and what I’m talking about, is pure human. We are doing life with the people we are caring for. We can’t expect anybody—including ourselves—to have perfect performance 24/7 for years and years.

I have to get off the guilt bus, and hope you will let yourself off too. I know I am doing my very best to provide everything I can for my dad, and give up a lot to do it. I know that for the most part, I’m doing a darn good job. I’ll bet the same of you. And if for no other reason than it will benefit them as much as us. This whole gig is exhausting and wild and emotional enough, without me exhausting myself over every occasional little lapse of perfection……Blessings to you!

Call the Alzheimer’s association for info in your area. They are available to talk 24/7! They have given me comfort and guidance a couple times when i was feeling bleak. Also attending a ALZ support group will put you face to face with others who have all kinds of local recommendations for assistance.
Good Luck to you

Thank YOU!!!

My mom has been experiencing cognitive decline, mood, changes for the past few years. It's hard for me to let go of the worry. It's been very difficult grieving this, she is very different. I'm not even 40 and I never expected this so soon. I feel guilt for wanting to have my own life but in the position of knowing no one will handle this. How can I just leave? I've tried to help and that doesn't seem to make much difference. She won't or can't take care of herself.
I'm depressed and not equipped to handle this all on my own.
My parents have little money, no plan.
My father has poor mental health and has absolute no capacity to take care of anyone.
I feel lost, alone and my heart is broken.

Thank you for your wise words; my husband had a liver transplant just a mi th ago at the Mayo Clinic in Jacksonville; we just came back home last week. I try to take care of all his needs and he gets mad at me. I’m so exhausted physically and emotionally. He is my love and I just wish him the best. I know that the anti- rejection medicines cause mood changes but and try my best but isn’t an easy task. I think that I have to stay calm and not answer him back when he gets irritated. True love has to be tested ! Blessings to all !

When the situation is hypoxic I have to breathe some oxygen--get out of my head & just be fully in the moment & focus on my breathing, repeat a calming & empowering phrase to myself. I have to build this in as I go through each day, also some physical activity, especially lots of stretching. In Dante's inferno the journey is from hell to purgatory to paradise. You don't have to be of any faith or no faith to journey through the pain, sadness, grief, rage, exhaustion, despair. Giving & getting emotional (& practical) support is huge during this journey. The perfect is the enemy of the good.

People are like elevators. Every elevator has its maximum capacity (& it is whatever it is--there's nothing wrong with an elevator that can carry "only" 2000 lbs or that one that can carry 4000 lbs. is "better"). We have to adjust the load to our capacity, & we exceed the max at our peril. We got to learn & respect our limits. Feeling guilty never helped make me a better person, act better & never did anyone else good. I try to acknowledge my feelings and use them to make choices that help feed & sustain me. I can be my own worst enemy--the woulda, coulda, shoulda stuff. I run off ingrained ways of thinking, feeling, acting that are not good. To hell with judging myself & concern about others perceptions & judgments about me--be they positive or negative. Be gentle with yourself. Onward!

The analogy of the load capacity of the elevator is perfect. Thank you. I think I've hit the “anger” phase - Do we go thru the same phases as grieving, because that is what is happening.
I can look at those ads on TV for medicine or facilities for memory care and it seems like a country club on steroids. Yeah, right....
I was feeling down (and it wasn’t the chronic, controlled depression I live with) but couldn’t identify it. The PC ordered labs to rule out anything physical. All perfect.
Then, I realized I’m angry. I have nothing in my life to look forward to. No travel, hardly any getting out to concerts, galleries, classes. Just being responsible for everything. My husband is profoundly hard of hearing and has micro colitis, and when flared up he will not leave the house, which is understandable.
Most of the time I have grace, and sometimes I don’t, and I say a lot of things he can’t hear. But, like one of the comments above, it’s all over my face. I remember a saying from AlAnon about being sarcastic - it comes from the root word tearing of flesh. I don’t know if this is true, but I remind myself and clean up my behavior fairly quickly.
Thank you for this Dipsy Dumpster

I noticed this entry was written in 2016. This only proves a point that Scott's sense of humor is timeless. We all deal with caregiving in many ways.
Thank you very much for giving me a good chuckle and a big smile on my face with your post. I host support groups for those caring for a person with Parkinson's. (Public Educator/Ambassador for the Parkinson's Foundation and Boxer Relations Coordinator for Rock Steady Boxing (Exercise program for People With Parkinson's).
One thing that is a constant battle is to keep our sense of humor. To coin a saying, " laughter is the best medicine" is still a great tool in the mental tool box!
Parkinson's is a personal battle but touches anyone that cares for a PWP
(Person with Parkinson's). We cannot necessarily find anything funny about
a chronic disease but we can still have a laugh at ourselves once in a while.
Example: My husband has been living on his Parkinson's journey for 15 years. Things are changing for him and I have become "over vigil" at times as he has dizzy spells ( blood pressure drops when he gets up too quickly) and can take a fall. While he was trimming the yard (which is pretty big) recently, I looked outside and saw the edger lying on the ground. Well, I started to make my rounds of looking for him without looking panicked. As I got closer to the edger, there was a small sign stuck on the handle with these words " Relax. Breath. I am in the bathroom." It was just the right touch to give us both a moment of laughter.
He sees my worry (which I try to hide along with my guilt of not being able to be there 24/7 if he needs me). I am lucky enough to have a husband who has the ability to still observe my actions and keep me laughing! Thank you again for your article. It was much appreciated. Keep smiling!!

I have caregiver guilt. I am exhausted and my life and husband's life has been shaken like shake n bake and thrown into an iron skillet. My husband is my entire life and we have little family support who live in 2 different states and we dont have kids. My husband has parkinsons and some cognitive decline. He doesnt want to follow dr instructions. He gets so frustrated with me. We have been at this for 4 years and i am exhausted giving orders. I have to constantly tell him to drink water to prevent dehydration and contipation. Neurologist stated that he needs to participate in his treatment plan. It is so frustrating when if he would drink fluids he could prevent multiple ER visits. He doesnt cooperate much and it is tough on me. Thanks for letting me vent

I understand. This has been a long time for me but my first husband passed away in 2012. He had type 2 diabetes and other issues. Non compliant. All I could do was hold his hand through his last breath.