The Caregivers' Guilt Dumpster - Open for business

The Airplane Trip. We're snowbirds, so after Christmas we return to Las Vegas. There is no reason to pack, but she spends hours building a carry on that weighs a ton. Then there is the purse that weighs 20-pounds (full of coins). Even though I have us both signed up for 'known traveler' and 'pre-check' she gets to the TSA facial recognition and shows her 2-year expired drivers license. "Do you have a something with a photo ID?" I know this will be a problem. I whisper in the TSA lady's ear, "She has Alzheimer's and this will take time." We go through two supervisors and then 20-minutes going through EVERYTHING in bag and purse. I patiently wait on the other side of the 'ropes. When she exits I say, "We're going to clean out that purse." The next day, when she getting ready for the day, I clean out all the stuff, coins, old pieces of paper with written 'reminders,' and junk. I find the essential IDs, passport, current photo drivers license, insurance cards.....and get the purse down to 2-pounds. I hand the purse back to her and say, "Here's your purse, I got rid of the coins and old papers, and organized the important stuff." She picked it up and noticed it was much lighter. She said, "Thank you!." Caregiver lesson learned: 'Just do it, don't ask to do it.'

You don't deserve guilt. You deserve a halo.

My husband is dying of lung cancer. It was diagnosed in september of last year and was already stage 4. They told him with treatments he may last 2 years but without, 6 months. He did two chemo/immunotherapy treatments and decided that he could not do any more. HIs last one was in January. Hopsice got involved then and they are great. They come twice a week and are on call 24/7. Today his hospice nurse came to check on him. On her way out, she told me that he has declined since she saw him two weeks ago. She said her guess was he has about 2 months. My guilt comes from sometimes getting grumpy with him as he is constantly calling me for things. I do my best to stay nice and happy but sometimes he just makes me so frustrated. He refused to use his walker and within the last 3 days, he fell 6 times. I am the only caregiver and have to pick him up. I am so afraid that he is going to really hurt himself or I will hurt myself. I will be 70 next month. Thank God he doesn't weigh much or I would not be able to get him up. I have told him time and time again to use his walker, but he refused. Now he finally started to use it. Anything the hospice nurses or I suggest something that may help him, he snorts and says that he doesn't need it or want it. He is his own worst enemy. He also is an addict and tends to take too many of his pain meds. Finally hospice had to only give him a 3 day supply of meds so he would not do that anymore. He will then call around and ask people if they have pain meds. He even called and asked my two sons. I just get so tired of this behavior and it makes me irritated to say the least. Then I have to remind myself that he is dying and then I feel ashamed of myself. I apologize every time if I get a little short with him. But trying to help someone and they fight or argue with you on every front makes for a tiring life. So, I really try hard not to be rude because I know as hard as it is for me, it is much worse for him. It is so hard to watch someone you love slip away day by day.

Hi@denise96, caregiving can take its toll on the caregivers. We're all human, including you, and your husband sounds like a handful. He's asking you to do things that are beyond your limits. It's okay to be grumpy once in a while. Maybe he will become aware of how his behavior is impacting you.
Is it possible you could get some help for yourself? An aid that would stay with him and cater to his needs while you get some rest or get out for a while? Can hospice suggest anyone?
When my husband broke his hip, a physical therapist showed us how he could get up if he fell. It involved bringing a sturdy chair to him, him getting on his knees, facing the chair, putting his arms on the seat and using it to get himself up, then sitting down.
Have you spoken to the hospice nurses about his falling? You need to be careful and not injure yourself when you're helping him, as you know.
You are so dedicated and caring. He's fortunate to have you there for him.

I love this “Guilt Dumpster”.
Today has been a bite my tongue day. I see something different everyday. My husband has never been diagnosed, I know he knows that things are changing but I don’t want to bring this to his attention it just makes him feel worse. He’s started to say negative things about his self and I say we all forget. But it has been a rough week as I had an ear infection and today started with a UTI. I am mentally tired today and feel like I could sleep for days but know tomorrow will be a better day. Going to doctors appointments takes up a lot of time since we both have had cancer 3 times but we are doing great in that respect. My sister wants to come for a visit she lives in the UK and we live in California but as much as I would like to see her I know it will be more work for me as she is high maintenance and will not wear a mask, she knows our situation but when I mentioned helping she said she wouldn’t. Then her daughter who I haven’t spoken to in years said she would come with her and a I got a message from a cousin I hadn’t seen in over 30 years who wants to visit.
I’m beginning to think there may be a flyer out inviting everyone. 😂If it was my mother who has passed I would jump at it for she always cooked etc when she came.
Okay enough from me today until the next time. Be safe everyone and stay away from the flu.

Hello. This is my first post on this site and I am so thankful for the “dumpster “. After reading everyone’s comments, I am so glad I am not alone - even though most days it feels that way. So I have to do some dumping starting with a big SCREAM! Moving on to the “why me” guilt trip and last for today🤦🏻‍♀️, I can’t do anything right.

So my husband of 11 years was diagnosed with Wernicke's encephalopathy due to chronic alcoholism. He had trouble walking, standing, memory and vision loss and can no longer work, drive, or do anything around the house. He eats, sleeps, has vestibular therapy and creates plenty of work for me. Sometimes it is difficult to keep up. He has two sons and neither are able to help out so my daughter will stay with him when I need to go out. He is sleeping now, so some respite until we start again tomorrow.

Last dump (or compliant) for today, I am drowning here and can’t seem to find my life vest😥!

Thanks so much for providing a safe place to ‘dump’.

Oh my goodness- so very sorry that you have this overwhelming responsibility.
Both you and your daughter definitely need help.
If you are in the U.S. I’m wondering if there are healthcare helpers available?
The other organization that may be able to give you advice & support could be Al-Anon groups in your area. Very helpful.

I know what you mean about guilt. It's the gift that keeps on giving, for sure. And the preemptive guilt, where we anticipate some upcoming challenge or event and feel guilty because we doubt we will handle it effectively for all involved. And when we have many, good hearted, loving children and grandchildren who could make things easier for the 24/7 caregiving spouse, they mostly refuse to do so. So I feel guilty about that, because somehow it must be my fault that these loving relatives refuse to help in any meaningful way. What have I done wrong? I say I need a week or two to get some things done that have been on hold for years, and the refusals are adamant. They are afraid her separation anxiety, being away from me, will be too uncomfortable for her. So, we just wait until one of us passes??
I am reading "Travelers to Unimaginable Lands" by Dasha Kiper. It's remarkable how many caregivers of relatives with dementia have similar daily struggles with little or no relief. A line from the book: "How is Mitch? How's he doing? Let me tell you something, the patient is fine it's the caregiver who's going crazy."
Now of course, the "patient " isn't really fine, but you get the point. The author explains how the caregivers' expectations influence their distress over the changes in the loved one. We can explore hundreds of strategies, books, advice, insights and yet still be in the same rut with no light at the end of the tunnel.

Great posting! I’m not saying much just driving by & dumping my load! Thanks for sharing!

I totally agree and I understand. Kudos and Hugs your way!