I am so fed up! I just want to lock my doors, not answer my phone and hide until this is over!!
I had to take Kevan to have his eyes measured for his carat acts and it was hell.
1. It's hot as hell here today 2. Parking garage full except for 6 th floor. 3. Had to wait 1/2 an hour after appointment time. Ok for normal folks but not him! 4. He had a file folder full of info for the day of his surgery but he thought it was for today. Wouldn't give them up, wouldn't listen to me or staff when we told him they were not for today. No he won't give me the papers. I would be taking away his independence. 5. Credit card rejected at garage payment machine. Tried three times while he was behind me telling me what I was doing wrong and trying to take the card from my hand. I said NO rather firm and he got mad. I paid cash. 6. He refused to speak to me all the way back to his residence. 6. I came home. I need an Ativan. Big dose!! I had ice cram instead. 7. He kept the papers. He says he is going to call the Dr. Himself tomorrow. I just want someone else to take over and let me live alone. No more stress. No more being treated like an idiot. I don't think I look stupid! I am not answering the phone now and he has already called and left a message apologizing for being mean. He says he should have seen how stressed I was.
Fronto with bv!! WOW!! 16 years and counting. I'm so tired. So sad! I was told it is verbal abuse. Right but there is nothing us caregivers can do about it. I think he will, as the staff have told " PUT ME IN MY GRAVE" before he goes!
Jazzy, I completely sympathize. I think we are often called on to handle jobs that are too much for one person. If an agency were handling this, it would probably assign two people - one to drive and park the car and another to escort Kevan when he was dropped off at the door. The heat was brutal today and I cannot imagine how you managed him. Thank goodness for ice cream.
My husband is cooperative but his disease is quite advanced and it's starting to be difficult to take him out for appointments. Just to lead him across the parking lot is hard and then I have to lead him around the car, get him to sit in the seat (which he often does not recognize), strap him in, etc. I keep going back to what Joan once said - that our spouses are like adult-sized special needs children. But most of us are not like the youngish parents of special needs children; given our ages, we are more like grandparents.
What a nightmare, Jazzy. It does sound like very soon if not already, these excursions are going to take more than one person to go with him. Could the facility transport him and have a staff member go with him, and you also attend the appointment, but follow the transportation (cab, ambulette, etc.) in your own car?
Our daughter lives close and last night she said she will be going with us to all appointments now. She said I will pick you up and then pick him up. You can deal with Doctors or such and i will take care of him. I wish I could get those papers away from him as I am concerned he will misplace them. He just jumps from good boy to bad boy in no time. He wouldn't speak to me when I drove him home but called an hour later to apologize. He said " I'm sorry I upset you as you were so stressed" . All about him. My fault for being stressed. Later he called to say good night and was back up high again. He is having difficulty with comprehension and getting things for out from his brain to his mouth but can write it down just fine if he takes his time. He is also having problems remembering computer functions. I really wish I had a few family members who could take over once in awhile. I get tired being the whipping post. I also had to go in yesterday, figured I would get all the nasty attitude done in one day, and try clothes on him and get rid of the to small ones. That was an experience. He was so sure it all fit. One argument from him every article of clothes. I left with two green garbage bags full. He gets really helpful if I tell him our daughter will be in to do these things for him as he knows she will not take his crap and he will have to behave. I guess it's alright to treat me bad but not anyone else. Any idea how much longer this stage will last? He is fighting so hard to maintain his independence. So hard to watch.
Wow, Jazzy. What a good description of FTD. I am at about 17 years of when I first noticed changes. DH is undiagonsed but I am 99.99% sure DH has FTD BV. My DH is so highly functional that it drives me crazy. He is ok to be at home and do some many normal things but can't handle the verbal and relationship things. I visited with his doctor several years back and he felt it was Picks which is the old name for FTD. The current thing that is driving me crazy is that I am corrected on every little thing that I said. The thing that I get corrected for the most is that he feels I am repeating what he has already said, and it is not necessary. Or that my response is that same as responses from other people. Usually people that he is mad at for something. I will be told that I am talking like these people just to upset DH. Either I keep quite, which usually causes more reaction from DH. Or I say something like, "I was just visiting with you." Really, it doesn't matter what my reaction/response is, it isn't right and I get in trouble.
You're right, it is so frusturating being the "whipping post" all the time. And his moving between good boy and bad boy is hard. I have to handle everything that I say as if he will have the bad boy reaction. I guess my first priority is to protect my feelings. If I can stay "up beat" it helps me a lot. I am an up beat and positive person by nature, so when I feel low, it is really hard on me.
I wish that I could just be gone a few days without it causing a big reaction. I would love to pull my camp trailer to some mountain park and just sit in it for three days.
Jazzy wow 17 yrs.!! You deserve to hide today...Ignore the phone the doorbell. We are starting to have similar problems. How have you survived all this time? I'm going crazy w dh hiding paperwork, will not sign his name on important documents. It will be 2 yrs this October and I'm exhausted. Dh dx Lewy body w Parkinsonism
onewife - do you have his power of attorney? You should and then you can sign for him.
Mary, when you said " his moving between good boy and bad boy is hard" brought back childhood memories. My dad was a 'dry' drunk and that was my life - he could flip moods in a second and I was his target. If my husband was that way, I would be out of here. In fact, there have been a few times when I get frustrated and his reaction is to blow up. Boy does that trigger me.
I so admire and respect you spouses that are going through the bad/horrible/abusive moods of your spouse. And to be going on so many years, hugs to you all.
Showers: my husband use to be the one who could not start a day without one. He started not taking them so I assigned two days a week and wrote it on his calendar. I need to redo the calendar because one falls on Friday - his day care day so he skips it. I try to get him to take it on Saturday but he is often up and dressed by the time I get back from walking the dog. He use to check his calendar when he got up before doing anything but not anymore. Now I am lucky if he takes one once a week. But I won't complain too loud because I know many of you have it worse and I know my sister can go weeks between showers.
Jazzy, I am glad your daughter is going to go with you. Maybe she can get the paperwork from him to make copies so he can keep his copy and you can keep one.
I am so sorry that you have to go through this pain. Another resident, while my husband was in LTC, had Lewy Body, and I shared lots with his wife, so I have some concept of what you are experiencing, plus all your input.
You have been a terrific wife, dealing with all the 'crap' and stress that comes with this disease. Please know that you are doing an outstanding job. This disease makes him incapable to understanding what he is doing to you!
Take care of you, and know that he is counting on you, even though he doesn't truly realize it, but knows it stresses you out.
Thanks everyone. It's so nice to be able to come here and know that you can let off steam and not be judged. Everyone here understands. Most of you have been there.
Marg you put it so well. It's what we feel and what we go through.
Mary you get it! Take care. Be good to you.
We need to have sound prof room so we can go there and scream and also not hear all the comments coming at us from our loved ones. One fellow I knew used to go out to his garage, turn up his radio and scream. Thanks