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Caring for the Caregiver Support Group (Florida) Event Date: September 22, 2022 | 11:00am - 12:00pm ET

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@ess77

@baeph and all...My heart goes out to you and your husband. I'm so sorry you're having to deal with all these overwhelming emotions and physical issues as well. I cared for and oversaw my mother's care during 12 very long years with Alzheimer's. I'm now the caretaker/helper for my 53-year-old son with Dystonia, a movement disorder affecting his entire body and with acute and chronic pain. Very rare and difficult to diagnose and treat.

I hear in your message your husband is dealing with cancer on a moment-to-moment basis, daily is as long as he can handle. I suspect he isn't capable of at this time thinking he has a tomorrow, so will not go there in discussions or his mind. I understand that from my own experience and personal illnesses. It's a step in the right direction heading to acceptance of the diagnosis. I found it took me time to go through this part of the process. Then, as the treatments began to help, to ease discomfort, as I dealt internally with the facts and new life, I began to see a day ahead. I believe it has a lot to do with the issues of hope, and disappointment due to total loss of hope. We can't go forward in our thinking or lives if we have no hope for having a life. Perhaps he's still in that place.

I believe if that's correct it requires your understanding and patience, one of the toughest things we caregivers are asked to do. Be patient. Yuck! Hate that. It's so difficult to do in my life, much less in dealing with my ill loved one. But, he needs this time to develop his thoughts and see a light on the horizon. We tend to push forward with making things happen. He needs to sit quietly and allow his thoughts, his inner self to catch up to this thing that has hold of him. If you can accept this, you will find more peace, less frustration, and more hope for your life as well.

I'm a caregiver, a mother, a daughter, a person who wants to fix things. Some things I can't fix. Same with you. We must accept there are some things we can not fix. I've been in fight mode for so many years it's affecting my body tremendously with illness, and breakdowns of systems, so much damage is caused by this fighting for my loved ones. At this point, I have just gone through an enormously horrid weekend with my son and am now accepting the fact...the FACT... I can't fix this. I can't fix him. I can't do anything further to help. I must step out of the way and allow him to go through whatever is happening in his way. On his own. Tough. Not in my nature, but required of me as his mother and caregiver.

This is my acceptance journey. Also tough. Never-ending, either. We accept eventually and then can move on into our own next steps, our own lives. I'm getting ready right now to go to the mall and shop with my one friend still standing, and have lunch. First time I've done this in several years...about 10??? Wow, not good for me! So, I'm pulling up my big girl slacks and moving forward, leaving my son to deal with his issues for the moment.

Now, I have no idea if this is the way you must travel. I know it's my way and has been a terribly long and difficult journey getting to this place. I will survive and live. I will help my son. But, I must honor his wishes and allow him to deal with his personal hell in his way. You are getting help it seems, so let the help sink into you both. That's my suggestion. Not advice. Just my personal suggestion.

I'm thinking of you both. Be blessed. elizabeth

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Replies to "@baeph and all...My heart goes out to you and your husband. I'm so sorry you're having..."

I can’t begin to tell you how much your words have meant to me and how accurate your understanding of my situation is. Like you, I want to get him well and move forward. I guess forward for us remains to be seen. But your description of your journey gives me a benchmark of some sort. I meditate daily and this gives me something to think about.
I’m very fortunate in having support from a wonderful group of friends so I can get away almost daily for a while. I hope your lunch with a friend gave you some respite and a feeling of normalcy.
Thank you for taking the time to help me. I have to calm myself down and find a way to accept the things I can’t change (and the wisdom to know what they are). I hope your positive attitude and kindness bring you good things-you deserve them. Barbara