The Caregivers' Guilt Dumpster - Open for business

@cjme You are "preaching to the choir" with your post. I also have to weigh my emotions about unrealistic expecations about attending events, traveling, etc. Well meaning family and friends offer suggestions about going somewhere warm now that it's winter. But the thought of me handling everything is out of the question. Driving, packing all the medications, bringing the oxygen compresser and tanks, finding bathrooms . . . too much. Thank you for letting me add to your "dumpster guilt".

@looneyjm1956 - Your description resonated so much with my experience. So no, absolutely no kick in the butt from me. Your feelings are real. They're yours. And (as unpleasant as they may be) you're entitled to them. My wife has metastatic breast cancer, having difficulty with treatment and not responding well. Like you, depending how things are doing, beyond everything I need to do, I have to take over her household chores, chauffeur her, bearing the brunt of her anger. Like you, we can't travel or even make plans. (She's in the midst of changing treatment, and until we see how she responds, we can't risk being away. Last treatment resulted in an unexpected ER visit and 10 day hospitalization.) Like you, our intimacy has disappeared. And, like you, yes, I'm angry, frustrated, irritated. And oh, just for fun and games, I have cancer too. (Leukemia, CLL to be precise. I'm in active treatment but don't have side effects from it - but I relapse far faster than either I or my oncologist want).

How do I deal with all of this. Honestly, I struggle. We always thought I'd die first (we're in our 70's). Now I'm facing I'm likely going to be a widower - and sooner rather than later. We had all sorts of plans for doing things in retirement that are on hold, and may never come to pass. I'm mourning my dreams for what we were going to have, to do. I desperately miss any kind of intimacy. (I'd love just hugs.) My coping - well, to be honest mindfulness (ie meditation) helps a lot. I make a conscious effort to spend time with friends (coffee, facetime calls, etc.). I make a conscious effort to do things I enjoy. And, yes, I mourn. As much as my wife is facing real loss, so are you and I -- and it's okay to acknowledge that and accept it.

So, a strong virtual hug - and acknowledgement that what you're experiencing is real.

I was a happy, self-realized person, loving retirement (though it is boring, but in a good way), and then I noticed the changes in cognitive ability in my spouse with a 140 IQ. Instead of being a 'equal' she wasn't able to do much. I went into a sharp depression trying to figure it out and my life as I knew it was gone. The worst was the loss of the relationship, the connection, the love. We are use to losing people in our life, but not the 'slow [ever painful] goodbye.'

An experienced psychology nurse recommended, "Man's Search for Meaning" by Viktor Frankl. It wasn't what I expected. That book along with CBT has helped me come to grip with my path. I remember telling my children when they had a 'crisis,' growing up---'It's not what happens to you, but how you react to it that matters.' --Epictetus. Well, I use to say it, "In life, its not what happens to you, but how you handle what happens to you." My new job is to be a caregiver, which I'm getting good at, and live my dreams as much as possible. [Have to go, my puppy terrier just woke up to greet me.]

I've read a lot of these comments and, although I have not yet lost my spouse to cancer, I have been living with her disease for over 4 years. I feel guilt because I am so angry about having lost my traveling companion, my best friend, our intimacy. Basically, I am angry because I feel that I've lost my freedom. And then I suppose I get hit with guilt again because I remember that at least I am not sick. She is and has lost so much more.

So anyone out there have a way to temper...hopefully get rid of...this anger? We are at the point where I need to be around to drive to appointments, do the daily living tasks, etc. so hopping on a plane, train or automobile for a longer break isn't a reality. We have friends who want to help but she doesn't want them around for great lengths of time. Hours, not days...although I gladly take those hours and encourage any offers of visits.

Appreciate any advice this group can give me. Kick me in the butt if I should just shut my mouth and be glad for the time we do have together. Maybe that is exactly what I need to hear!

@looneyjm1956 Do not shut your mouth. Please come back and post on this site. It has helped me so much just to be able to share what I am feeling with people that "get it". Expressing your very real anger is so important to your mental health. You have every right to have your feelings be they anger or guilt or grief. I am well into 5 years of dementia caregiving for my husband. I can so relate to your feelings.
The feelings that you are expressing in your post are what I have felt and continue to feel. If you look at the stages of grief (over the loss of life you had been expecting) you will see that you are probably experiencing what is called "anticipatory grief". I didn't know what this was until my husband started his dementia journey. When I am angry, I do something physical like mop the floor, wash the car,( and they get REALLY clean), go for a walk or and this is the best- beat a pillow ( that has a paper written with what ever I am angry at pinned to it) with a waffle ( child's plastic) bat. It is very satisfying and releases a lot of held in anger and tension. Usually by the time I am done, the paper is confetti. You are not alone, my friend. I hope to see you posting here again.

This is free floating & garbled, so “dig in your spurs, Snuffy, it’s going to be a wild ride”.
There will never be any backside kicks from me or criticisms. Dementia (LBD) is the pits, there is no getting around it. I’m angry, sad, and actually worried that people I know will think I didn’t do enough. We are a long way from my husband transitioning into what comes next in the journey to the other side - but honestly, sometimes I wish it were closer - because most of all he doesn’t deserve to have the end of his life be like this. He is “gone” except for those brief shining moments when his personality comes blasting through.
We both thought we’d get old and one of us would get cancer or a stroke or a heart attack that we would die from. Not so, this is the death of a thousand cuts.
I know it’s hard, you don’t even know how to do this, but refrain from self criticism, you do not deserve it.
I also worry about who I will be when this is finished? Will I have enough health or time or even money to do some of the things I had planned. And, yep, I can get really angry, about everything because the root is anger at what happened to us.
Peace, Cheryl
PS:
This is a little story I will share about a friend of mine that died last year.
He got lucky - he had pneumonia that took him before the dementia had progressed.
He was an atheist. He worked in high security nuclear industry with a lot of brilliant folks and one day a secretary asked him since he was an atheist what did he think would happen when he died. And, his own fashion, he told her he supposed he would just be in oblivion. She was hard of hearing and she thought he said he would go to Bolivia. So, when he died, his partner found a clay vessel from Bolivia that she had his ashes placed in. We all had such a good laugh at his wake.

Just put my husband in memory care facility and feel so much guilt, sadness and loneliness. It got too much for me with the no sleep and aggression and diapers that I thought I would go first. He seems to be adjusting and will see how long the money lasts then I guess Medicaid. So very much stress in what is supposed to be golden years!