The Caregivers' Guilt Dumpster - Open for business

@krisingle1 My Mom (dementia) has been having issues of late with her BMs, but she's also been on an antibiotic, so it could be that.

I am sorry that I have missed all of you but I am not getting notifications that someone has responded. Today it said I did under three threads but I can't find anything. I want to continue to chat with you all, I was told about a program called Charlie Health. I just started it but have no feedback yet since I was only introduced to it.

Things have not been going well since the cancer is in my husbands brain and he broke his femur bone last month and he was moved from the hospital to nursing home for rehab. I cant get motivated to get anything done. It is so lonely with just the dog and I can't think straight missing him so much but when I visit him I feel rejected.

I cant even think about Christmas but was glad some of you have people to spend it with. I don't. These psychiatric medicines don't really help me. Not sure about you all. Someone mentioned about the patient needing the meds for depression and that is important. The problem is these need to really be monitored and I have been on quite a few. They are helpful sometimes and not other times.

@jehjeh I'm grateful for the Guilt dump. My husband has unrealistic expectations when he wants to attend events, due to his disease. He over estimates his abilities and mine. I have to be careful not to confuse my disappointment of not being able to comply, by feeling guilty, realizing I am the voice of reason and his disease/decline is dictating our inability to attend, not me.

@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".

@bigbon Thanks for adding the comment about the well meaning family and friends that give suggestions that require unrealistic energy to achieve! I have recently answered them with "if I could just snap my fingers and make it happen that would be wonderful, but the effort to make it happen would take an army of people, and the expense is beyond our means!" They do mean well, but you can't truly imagine it until you live it, right?

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
Hello. You post really caught my attention..Since January my spouse has either been in the hospital, rehab or back to the hospital.I just found out that he has LBD and Metabolic Encephalopathy. I am devasted .Our Anniversary is tomorrow. He is confused and sometimes know me. He definately has Sundowners/ LBD. He does not make sence or even no what to say. He has become paranoid , combative and delusional. He was so different as if it happened in a dream and I would wake up and I would have my husband back. I am so very sad. He is in Pallative/ Hospice as of a couple of days ago. It is the hardest decision I have ever had to make. All of you please look at your love one and love them and know this is inevitable. Tears have been shed and sometimes I wonder is this the day he goes to end of his journey of Life. Sad but not giving up hope that he will smile or ask for his favorite candy or say " Honey, I love you" .

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.]

@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.