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    • CommentAuthorSedgly
    • CommentTimeMar 17th 2018
     
    Hi all, I went to the new members introduction page and posted, someone there suggested I start a new discussion....

    Wasn't sure what to write about so thought about what bothers me the most.....and I guess it's that he hates me.

    If you've got time and inclination to read a bit grab a drink and a chair, I tend to ramble when at a keyboard..sorry..here's the highlights of our journey...

    Jim is 67, I am 59...we've been together 40 years. 5 years ago he was diagnosed with EOAD and forced to stop working.

    When he was diagnosed his neuropsych had a hard time categorizing him between EOAD and fronto temperal....

    His short term memory is pretty good... he forgets other things...Ex..we met our daughter for lunch and he had no idea who she was or her name....but...can tear down a carburetor and rebuild it flawlessly...

    I have given up the battle to get him to change clothes..and no, I can't take them at night....He changes his clothes once every week or two...

    He hates me....He calls me the warden and says it's my fault he has Alzheimer's...says I have to be in charge of everything...and it's true I do....but not by choice.

    I was trying bribes to get him to do stuff but it didn't work...I have threatened him twice with surprisingly good out comes...the first time was when driving he saw something he wanted and threw off his seat belt and opened the door.. I grabbed him and hit the breaks simultaneously...and explained he had to tell me and wait for the car to stop....a few days later I turned onto our street 3 blocks from home and again seat belt off, door opened, grabbing, braking...He thought it was time to get out....so I threatened him if it happened again he had to ride in the back seat with the child safety locks on...that was months ago..He will not get in or out of the car unless I do it first...

    The 2nd thing was more recent...He decided to begin calling me names...vulgar names....in all the years we've been together this has never happened....after a few weeks of it I got desperate...(there's nothing like having people stare at you while shopping when he does this....there is no appropriate way to react).so one day he called me bitch and I took the remote to the only tv he knows how to operate and hid it. (In my bra) and told him if he called names he couldn't have it..He searched for it..didn't find it..and finally agreed if he could have the remote he would not call names.....His Dr says he can't help it...His filter is broken etc etc......it's been a month and I have not been called anything....so I count that as a win....

    The most heartbreaking, brutal thing that has happened to him was the loss of driving privileges....He has not driven for over a year...but still holds a current license....

    I'm not sure where this journey will take us...if he were my parent or sibling it would be different..i would feel a blood bond to take care of them. He is not,... He is supposed to be my husband....and any husband who treats a spouse the way he does should probably be divorced.....

    He use to be himself most of the time, ...He would have times of being upset but he could usually be distracted out of it....the bad times use to be just an hour or so....then got to be a day or two, I can remember having our son come over to visit with him to help get him back....now he is gone almost continually...for the first time in months he was here a week ago Wednesday for about five hours..it was wonderful.....then he was gone....it's brutal to live with.. like having your heart ripped out over and over.

    The VA offered daycare,or someone to come to our home...He adamantly refuses both..and can't be tricked into it..... his social worker last week advised me it is considered adult abuse to leave a person with Alzheimer's home alone and there could be legal ramifications......I told her I have an excellent attorney and not to call here anymore...the thing is... I don't leave him alone... ever....wherever I go he goes....I haven't been apart from him for months......the kids don't like him or don't want to see him......the friends we had,..have for the most part vanished...so basically I'm going it alone....

    Just picked up cameras to install so I can check on him with out actually going in the room...hoping when the weather finally breaks..(another foot of snow last night with more coming tomorrow) I can get out and work in my flower garden and check on him through my cell...

    I miss so much....i need someone to share my life with....someone to love who can love me back....someone to have fun with...to live with..

    The day begins....
    Sedge
    •  
      CommentAuthorCharlotte
    • CommentTimeMar 17th 2018
     
    Yes, this becomes a lonely, horrible time for us. (((hugs))) Many of us are left alone - abandoned by family and friends.

    First, if the doctor says there is nothing they can do about his behavior, ask for another one. I now with the VA that can be hard especially if you live where what they have to offer is limited. My husband has only a choice of one of two PA. His neurologist is 250 miles away - VA doesn't have a closer one. Thankfully he doesn't have the behavior problems yours does which is probably part of the FTD. There are others here whose spouse has FTD that will able to identify with the nightmare behavior you are going through.

    You definitely need to take care of yourself but we all know that is usually easier said than done. At 65 my body is letting me down. I believe it is all the stress from the last 10 years.

    Is that the VA social worker? I have not had that said to me by anyone. If that is true, then they could be arresting almost every caregiver here because I will guarantee we have all left our spouse alone when they were able to be left alone. If she threatens it again I would be tempted to say - OK you force him to go to day care then!
  1.  
    Welcome, Sedgly, to the Merry Band here in Happy Hollow. I'm wondering if the VA can send someone to your home, if your husband can gradually be edged into accepting this service. I think others here have done this by using white lies until the worker can establish some rapport with your husband. Like maybe, she isn't here for him, she is here to help you...or something like that. Then you leave the house and go do something you want to do, and let the worker deal with your husband. Maybe she can go through the motions of doing some cleaning or something like that, while she is actually keeping an eye on him. You are going to have to get a break, especially with his behaviors being what they are. Most of us have experienced the disappearance of family and friends. It does seem to go with the territory, unfortunately. You didn't mention finances, advance directives, or any of that...but you did say you have a good attorney. So I hope you have control of the money and the property, and can get your husband's name off of things...keep him out of the computer business things, if he is computer-literate. You will get a lot of support and common-sense advice on this forum. I know others will be along.
    • CommentAuthorNicky
    • CommentTimeMar 17th 2018
     
    I'm sorry to hear about your problem Sedgly. I agree with Elizabeth about little white lies to get the worker into the house. My husband belonged to a drug trial & use to go to the Memory Clinic, every 4 - 6 weeks. So, when I got a worker from the Alzheimer Society to come to the house, I told him she was part of the program from the Memory Clinic - the worker told him the same thing. He wasn't happy, but since it came from the Memory Clinic, he probably felt he had no choice. And he couldn't be mad at me, since he thought it was a request from the clinic. At least I got a bit of respite & you certainly need that.
    • CommentAuthorNicky
    • CommentTimeMar 17th 2018
     
    Sedgly, forgot to mention. When I went out & left him with the worker, I told him I had a doctor's app't. This way he knew I had to go out. Any other reason would not have been accepted by him. A few times he got upset & told me that I was always going to the doctor. I told him I belonged to a menopause group set up by the doctor & had to attend or else I'd be kicked out... He believed me.
    • CommentAuthorbhv
    • CommentTimeMar 17th 2018
     
    Hi Sedgly, Glad you found us. We don't mind sitting back and reading what you have to say. I find that even though I just want to vent about a particularly trying day someone will come up with sometimes a simple, but brilliant thought. Sometimes complaining pays dividends here. But at the very least this is a group who GET IT.

    Your hb's behavior is interesting, to say the least. It is interesting that your bribes work. My hb doesn't have short term memory,but sometimes after I got mad about something several times he seems to have learned.

    Notice I talk about my husband (hb). I do not use Dear Husband (DH) because since he now thinks it is ok to curse at me and threaten me and once even landed two punches, there is not one dear thing about this situation. I am 63, he is 74. We've been married 35 years. He is retired Air Force and Viet Nam service qualified him for VA health care. We have a co payment. I have an appointment with them in two weeks. In Dec they said the in home services and day care programs were frozen, but that was when they were talking about shutting down the government. He doesn't have service connected disability. But now with the Alzheimers I am wondering if their geriatric services might be better for us.

    I am sorry I don't have much to tell you. I recently got a motion activated sensor for the bathroom. I made myself a little back pack to carry cell phone, home phone and monitor when I go work out in the field. If the monitor indicates he is spending too long in the bathroom I run inside to try to limit the mess. Frequently he will watch western shows or something else and I can go work for awhile. The he will get lonely and come find me and "help". That generally means undoing what I have done or putting my tools away even though I am still using them. If I complain he curses me out and goes back inside to pout.

    Last summer I went to an adult day care place but didn't think he would tolerate that. Recently his personality has changed and I just signed all the paperwork. He will start there on Tuesday, for three days a week. I am so stressed out worrying that this is not going to work it is ridiculous. I think he will tolerate it now. I was going to have in home care, but decided to try this first because lately he seems to be bored and pacing and shadowing me. So being around different people may be a good thing. I am not warning him. I did take him there two weeks ago when I went to a support group and he stayed on the day care side. It was weird cause they had a window and he could see me there. He either paced back and forth or sat watching me through the window. I don't know what will happen, but I am just going to tell him we are going to try something new and go there on Tuesday and see what happens. They say their bus should be able to pick him up on Wed morning and take him home. That will be another adventure. I have no idea how he will react to the bus. The social workers say it is worth a try.

    I have a lot of questions about legal issues like the person telling you you could be charged with abuse for leaving him alone. I took him for a ride this morning because he was driving me crazy in the house. Then I got so annoyed on the ride that I was sorely tempted to just leave him on the side of the road somewhere. Wondering what would happen if Idid that kept my brain entertained for awhile. But what about his physical and emotional abuse of me? Some say I should place him, but he is physically healthy. What if he lives for twenty more years? And what if he is abusive at the memory care place? Someone here had to hire one on one care to prevent his wife from abusing the other people. Hugely expensive. So for now, I try to keep my tone of voice positive or matter of fact. I have a safe room where I can lock myself in. I have friends houses I can go to. One night I turned off what I was cooking because he woukdnt leave the kitchen and I was afraid to have my back to him. I drove around the neighborhood and then parked my car and read a book for awhile. Next time I will park so I can watch my house.

    Enough for now.
    • CommentAuthorpaulc
    • CommentTimeMar 18th 2018 edited
     
    Yes, if you leave someone home alone with a significant cognitive impairment you can be charged with abuse. Legally it is like leaving a 7 old year alone. Chances are that this will not be an issue unless something happens, but sometimes neighbors may report to the police if they suspect something is amiss. There are cases in the news where adults are terribly mistreated (e.g. locked in a room all day with no access to bathroom). No one here is doing this but it is an issue.

    But what to do when they will not accept an aide. It took a plea bargain with my wife where she was ordered by the court to have a companion. Once that happened she accepted it (though we went through a few companions) and I didn’t have to argue with her about having someone with her.
    • CommentAuthorSedgly
    • CommentTimeMar 20th 2018
     
    Charlotte: I do like his VA doctor. Not sure what they could recommend for his behavior. Is there something besides drugs to help with it? Yes, SW is through the VA... I have spoken with her many times on the phone but haven't met her...don't care for her or her attitude...kind of like her mission is to look out for Jim and I am irrelevant... We are lucky in that the VA is within an hour and has all the drs he needs, he has geripysch, neurologist, MD, etc.

    I do believe the stress from this is brutal.. i use to enjoy have 5-6 balls in the air...after they told him last year he could no longer drive I ended up in hospital with graves disease, spending 10 days on the cardiac ward... when they told me it was usually precipitated by a stress I knew exactly what the stress was...thankfully I am a very healthy person and am almost back to 100%.. but I did learn, stress is not my friend...

    Elizabeth: it's been a year since his MD referred a SW. she offered daycare or someone to come in..Jim is very highly functional.. and I did talk with the daycare, they advised they would pick him up and drop him off..but when they began talking about the crafts they had for their patients to do, I knew it wasn't for Jim...he's not there yet..
    As to legalities, yes, we have most all of the planning in place, (poas, heathcare directives, wills, etc)though I now want to change some of it.. the attorney is left over from when we had money...unfortunately I didn't realize how bad financial problems were with Jim until he had emptied most all of our accounts.... almost everything we had was in joint accounts..i have no idea how I will fund his care when it comes to it......his name is still on all of the real estate we own... but he has no debit cards or charge cards and I don't think he could withdraw money even if he wanted to...he hasn't in 5-6 years.....I was making sure he had a hundred dollars in his pocket but it would vanish so I dropped it to 50..then to 20...now to a few ones...I keep hoping I will come across envelopes of cash...so far I have found receipts where he has given " friends" thousands of dollars but no cash....the missing money and empty accounts was one of the 1st things that drove us to the doctor, that was eight years ago that he was diagnosed with MCI... I need to do an attorney sit down to try and figure out how to protect myself... I just don't have the drive to do it...
    He can do nothing with a computer.

    Nicky: I will keep your advice for the future.

    Bhv: Jim was drafted in '70... he spent 2 years... we also do copays as he is rated 0%..I had not heard of anything being frozen, but there's no reason I would have. It has been just over a year since they offered help. His next appointment is the first week of April so I may check then and see what they say... sw also offered some type of group phone call type support but I wasn't interested.. Jim too will watch the b/w westerns, but I discovered another oddity with him...Netflix had an Iranian series on, it had some ridiculous 127 episodes per season...he watched them all... subtitled in English...he watched it and I thought WOW, he can read that..then next day I happened in while he was watching it and the subtitles were in French... he doesn't speak French...so I asked him about it and "he didn't need it in English to know what was going on...."he could tell"..which fits with a lot of his misperceptions in life, he can just tell so it must be so....

    Please write about how the daycare experience went, I would like to know...

    Paulc: yes, that is what the SW said. Adult abuse because he is considered incompetent...

    All: thanks for your responses. I have decided I will bite the bullet and hire a friend of ours to come for 2 hours... just once, to see how it goes...both with me and him...no idea what I will do but have a fantasy of simply driving away....to where I'm not sure..
  2.  
    Sedgly, you need to get his name off the real estate. He can't own anything. You aren't going to be able to (for example) sell the properties if he still is a legal owner--you need to be free to handle the estate and make the decisions.
    • CommentAuthorpaulc
    • CommentTimeMar 21st 2018
     
    I agree with getting his name off of real estate. Check with your local land office about what to do. You probably have to register your POA with the land office. I had to do that in order to simply get a new line of credit on our house (not using it, it is for emergencies). It was simple but I don't know what is involved in removing his name.

    You need a Medicaid Certified Eldercare Lawyer. This person will help guide you on preparing when he will need a nursing home and how to protect your remaining assets. I suspect you will have to sell your real estate (other than your home). However, if the real estate is generating income you may be able to keep it. But this is why you need a lawyer who is intimately knowledgeable with Medicaid in your state.

    With my wife her behavior is controlled by my medication and environment. Medication is a moving target, what works today may not work next year. My wife is in a memory care only ALF. It has taken time but her being in a very regulated environment helps a lot. But in the case of FTD it is a matter of time. We talk about the "rage stage" and it eventually passes. But life is heck until it does.
    • CommentAuthorbhv
    • CommentTimeMar 23rd 2018 edited
     
    Hi Sedgly,
    The first week of day care was pretty good. Very interesting. Hb won't participate in the artsy crafty activities, but there is another room with comfy chairs where he can just sit, or talk to some of the other men who don't participate either. He can sit with the social workers and they will talk with him. Sometimes they have movies in the afternoon. Yesterday they got him to play WII bowling.

    He tries to escape and paces in the afternoon. That is one reason I wanted this. On their advice I asked doctor for something to calm him. I got the prescription but I don't want to give it in the morning because he is calm and happy then. I think they should give it with lunch but they need yet another form from the doctor to let them do that or I need to be there at lunch. I am dropping him off and picking him up I am NOT going there at lunch time!

    For a number of reasons the bus didn't work out for now. There is a new director, new bus routes, bus broke down on first day, aggressive big guy on the bus already, yadayadayada. Will ask about it again after next week. We have a VA appointment on Wed with a new doctor.

    I thought he would fight about staying there, but he didn't. I thought he would refuse to go the second day but he seemed to be looking forward to it. I thought after he pushed the nurse around the first afternoon that either they would refuse to have him back or he would lash out at me for taking him there. They say he will adjust and are happy to have him continue. He didn't lash out at me. He said he had a good time!

    Today we are staying home and he seems to be calm so far. Last night he kept coming downstairs wanting me to go to bed with him. I refused. He kept coming down and going back up about 49 times in an hour. I decided it was good exercise for him. I finally relented and then he kept touching me. No no no. Finally he went to sleep.

    Glad someone can sleep in this house. I got up at 3 am and, probably cause of the storm, there was no internet! I am so frustrated this morning can hardly bear it but am trying to appear calm. I don't think I am going to get anything productive done today.