Hi Michiganstressedlady, I realise your post was from fe. and I hope things have improved. I could relate to the feeling of everything coming down at once. At one point in my husbands illness, I felt it very appropriate to remind him and his family that the cost of a full time carer would be no less than 50k perineum, here in Australia. I am an American ex pat. At that time, I had been caring for him for 2 years. (I do still care for him). I proceeded to inform him and them that the amount owing me, if they wanted to look at in a monetary way, was 100k. That quieted everyone. To get to that point of me saying that, took me going through pain, heartache and being used. Until I did some research on carers and the cost of. I also reminded them, that I had not included holidays or overtime. Suddenly, the subject was dropped. I learned a big lesson that day: that looking at caring from a financial point of view, not to mention the re skilling that a carer may need once the patient has passed or improved, was important and that my care, even under the umbrella of love, had that aspect to it. I also began learning that I will not have may husband back the way he was before the illness returned. When he was diagnosed as terminal, I started to lose even more of him, as his personality began to change. My grieving started then and 2 years later , its continues like a passing wave. Sometimes I get moments or glimpses of his old self but that passes and I am reminded to keep letting of him and my expectations of him. That things were changing and I would be in more heartbreak if I didn't accept that. It is a very lonely aspect of caring. Watching the person leave you before they are gone. When I share this personality change, the docs wondered if it was the disease as well. He's on anti depressants which get adjusted from time to time and also diazepam when he starts to get real round up. I have even had to go so far as to say to him , in front of his doctor, and palliative care nurse that if his anger outbursts continue, to where I don't feel safe, I am calling the police and they will take you to jail or to a hospital. There is no excuse for abuse, emotional, mental , or the threat of physical. This is where we hit our rock bottom. It has since improved. He has not handled his terminal illness well mentally and emotionally. We still argue at time and I find myself having to get tough very fast. I can't get hurt or overwhelmed as it just gets worse. I get tough then I leave the room or leave the house, sometimes for hours or a couple days, still keeping in touch. He struggles with the ounce of spirituality that he has and is very ego and pride driven, he wasn't so before the illness.
The nurses tell me that becoming very self absorbed and trying to control all things possible is normal for a terminal ill patient who feels he now has no longer over his life and his future. A faith would bring him the peace he seeks. I continue to try to grow mine through this. May you have a gentle day of self care, mnina

Hi @mnina You bring up some very valid points here again!

One is the loss of control our patients endure. I look back on all the losses my wife had to endure and it amazes me. I don't have any idea how I would have coped with them. Not only the loss of control due to having an incurable, deadly disease, but then to lose over and over things in your life we all so take for granted. Early on it was driving, then walking, then her bed for a hospital bed, then diapers, and on and on. She too grasped for anything left in her control that she could possibly control.

You also make a good point of the fact we can only support our patients in their journey, but neither direct it nor force them to make the journey in a way we think they should. It took me a long time to go from thinking 'well, this is how I would do XXXX' to 'I am happy she is deciding to do XXXX her way'. One of the toughest in this area was when she wanted to make some amends with certain family members, but was perfectly content to not do so with some others.

As to the frustration you speak of, I can totally relate! I used to keep an old pillow on the sofa in our living room. There were many, many nights and days when I would collapse on that sofa and beat that pillow unmercifully! It helped relieve my stress, got rid of some weird kind of negative energy I must have been housing, plus I could cry into it and my wife couldn't hear me. She would get very depressed if she knew I was at one of those 'at the end of my rope' days so this helped me mask that for her.

I also hope @michiganstressedlady is doing as well as we can hope!

I wish all caregivers peace, courage, and strength!