The Caregivers' Guilt Dumpster - Open for business

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’.

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.

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 to Chris 20. It is hell on earth. You'd know what I'm saying. Whatever you do, whatever you say, nothing is going to be the same ever again. That wonderful person we married, had a life, a good life, is gone. Total dependence both physically, mentally and emotionally and gives no hint that she is aware of what is going on, so I cannot imagine even after almost 50 years of knowing her, what is going on in her mind. She won't talk about it at all, for reasons that may have to do with the illness or whether by personal choice. I am, and I presume most carers are, given grand advice to go out, find other activities, be with friends etc. My activities are related to my health problems and I am "allowed" to go to those, with a huge amount of "thank God you are home". Any other "outing" has to be negotiated and accepted with "if you have to". She is always accompanied by paid carers 24/24 who are great and very caring. But I am the one she always calls to do whatever is necessary. Guilt, plenty to have and share if anyone would take it. Trying to protect children and grandchildren, but gladly they are all wonderful and will visit whenever possible when work or school or their various activities will allow. I love sympathy but much prefer physical company. WhatsApp helps interact with the kids and the very few friends. Psychiatrist, Psychologist help one hours at a time and with meds. And yes, i want to feel that I did everything possible to make her life comfortable until the end and for her sake, she should go first, then I think "for my sake as well" and of course the guilt comes in. Sometimes more than the guilt is the anger, usually directed to my wife, which provokes more guilt. I keep wondering why such a slow dying process. I do not feel inclined to accelerate it, but the suffering for her must be awful (or not, who knows), and for me, well one gets used to it (or not). I did not mean to ramble, but this seems to be an acceptable place to do it. I wish all a huge ☺ smile (bigger than the one that appears), a good laugh (bellyaching laugh) and a big dose of patience (which wears out rather quicky, so we need a lot!). Think of the past (I am doing that with genealogy of the complicated family) and be satisfied that all are doing what it takes and never thought we could. We are stronger than we think, and hope that the rut we find ourself in will reach a calm sea with gentle waves to caress us with a feeling of a job well done.