How do you do this?

Kathy, I'm sorry it's so hard. Your emotions are those that are felt by a lot of caregivers. This disease really sucks.

You said "Argues with me about how to care for dogs, horses. I know it’s the disease but that doesn’t mean it’s not destroying me." Is there a way you could make him feel that you think he is probably right, and that you'll try to remember to do it his way? He doesn't have to know if you actually did it his way, and if he asks, of course you did it his way, and he was right. Of course you don't have to wait for him to ask. You take the lead, and tell him you tried it his way, and it was better. If you can do that, that should make things much easier. I'm not saying it's easy to do, but if you can do it, it's worth the effort. Just remember it takes two to argue. Small wins lead to big wins.

I know what you mean, and when you constantly have to let them think they're right and doing nothing wrong, it wears you down too. I can watch my DH chug down 2 cans of pop and if I say anything to him he'll just look at me and tell me he didn't do it. I too know it's just the disease, but when you're isolated and its just the two of you, it is definitely a struggle to have to go against absolutely everything you've always believed and done. Lately he has spent hours having long conversations with the pillows. He has more social interaction than I do, even if his are with imaginary people!

Kathy I could have written your post. I'm living the same life at times. My DH can act the same way. He was always a proud, born leader with amazing talents that people always gravitated to. In the early stages he would count on me to help him cover up his deficits. I would find myself laying out on the ground putting new twine on the baler or reminding him how to operate the tractor and I have never been the handy one. He took care of it all before. When I would hire help he would get so crazy that I started to let things go just to avoid the conflict and illusion that these people were ripping us off and still lurking around. Finally, I had to buck up and take a stand and get things done. I tried to contact people that he didn't know so he wasn't so embarrassed at not completing the work himself. I continue to assure him that he is retired from such. It's been a struggle even finding good help as we never needed it with all of his talents, so I wasn't sure where to start. There are days when I have visions of hauling him to a facility and dropping him off at the door so that I can have some time to myself but then he snaps out of it and is his sweet polite self again. Everyone says to ask for help but what can they do? His sis was here so I treated myself to an hour coffee with friends that I had not seen for months. As soon as i left he took off on her and hid in the barn. It's hard to imagine the in-home health care workers chasing him around the farm in my absence if I were to contact them. I try to make him feel important. He used to do the chores but couldn't remember what to do so I asked him to just give the barn cats a little food and later I found horse feed in their dish with some sad looking cats wondering how they were supposed to eat that. And yes it would be so much easier if they had some sort of acknowledgement of their limitations so that you could have an adult conversation about it and the future. And I don't know if it's some type of protective shell that it provides like shock that keeps them from knowing how bad they are and thinking that the rest of us are the crazy ones. If you can hang on, I'll try to do the same!!

My life exactly!

The moment we show impatience then all h*ll breaks loose. Am I doing OK? No but that changes nothing. You said it perfectly, we are always the bad guy, it's never their fault, they do not understand what we are going through and they never do anything wrong. Always guilt for something, always.

OMG! You are so not alone. For a while, my DH refused all help. I finally told him straight out that he needed to accept care from someone other than me. Not sure if that ever even sunk in. He refused to go to adult day care even after we visited and he consented. The day of, he just stayed in bed and refused to go. He's forever asking me what he can do to help, and truthfully, the best answer may be just to leave me alone. Sigh. He also has angry outbursts, which worry me. I've been lucky because when my son took the car away, he really wanted to get out more, so he finally accepted a caregiver as a "driver". It's only 3 afternoons a week, but I am so grateful. He now wants to get the DMV to test him because he really thinks he can drive again. I just nod and say, sure, when you pass that test, I'll be fine with it. Sadly, his executive functioning seems to have left him, so I doubt he'll be able to set it up. Sorry to have rambled so much, but just encouraging you to continue as best you can.

Shadowing behavior is unnerving. On paper it seems like no big deal, but to have someone on your heels 24/7 is exhausting. Extend yourself some grace and make a plan to get some regular breaks.

The flip side of him being "blameless" because his brain is damaged is you making all the care decisions because he no longer can. My dad wouldn't tolerate caregivers in the home either. At least not until I brought them in under the guise of them being there to help mom who'd just had knee replacement. You can create your own fiblet-- you're helping someone out of work, she's a cleaner, a friend has come to visit, etc. He unpleasant as a baseline, but he did adjust and when we found the right person he actually enjoyed his time with her.

My mom became a much better caregiver with breaks which meant dad was able to remain in his own home until a few weeks before he passed.

HB

I know exactly how you feel with his following you all the time and not giving you the "alone" time you need. My 62 year old husband was diagnosed with FTD in August 2021 after several months of testing (MRI, EEG, spinal tap) and the last few months have been quite the struggle. My "alone" time is when i wake up and have my coffee while he's still sleeping. It gives me about 2 hours to do whatever i need or want to do (at home). I can no longer leave him alone in the house, so he goes with me everywhere. And i enjoy EVERY minute of my alone time, even when i check on him several times before he finally wakes up. I used to get annoyed at him always following me and saying to me "I just want to be around you. I want us to be together". For me, I figured out that he wants to constantly be around me ( and sometimes right on my heels) because I am the one constant familiar/person in his life on a daily basis and he recognizes me! And I now embrace his wanting to be around me all the time because at some point he won't recognize me and might not want to be around me anymore. I know our experiences thru this journey are different AND the same, and that we are struggling and sad and angry and frustrated and confused but i just keep praying for me and my sweet dear husband and for all those suffering with the awful disease. May God bless you and yours

Bubba, we've had a lot of posts on that. Try to do a search to see what you find.