My spouse has been diagnosed with ALZ for about 5 years. He is now starting to question everything I do. He accuses me of doing things I am not doing. He watches me on camera we have at house, looks for me on app on phone. Then he questions everything even though I keep him informed about what I am doing. When I tell him he says that is not what is on camera or on app on phone. I am not the kind of person that takes this kind of stuff good. Bad ghost in closet if you know what I mean. How do I get over this, I keep telling myself it is the diease but I am so tired of this. I feel my love for him is going away but I can't leave him because I know this is not the man I married. I am so done with everything. I work 10 hours a day then have to go home to this crap. I just feel so alone and defeated.
LIz, this stage will pass. In the meantime try to find strategies to get through it. Others will be along to let you know what worked for them. For some it is medication for the patient, or medication for the caregiver, or respite to give yourself a break, hiring someone in for a few hours to take the patient for a walk, TV, play games; or a combination. I'm trying to remember back to what I did. I know it got to the point where I was afraid to go to sleep because he was so angry and trying to find some way to blame it on me. I think now it was dh's way of feeling some control. He didn't know what dread thing was happening to him, only that it was, and I was handy. Now I remember. He had a spontaneous decompressive fracture of his coccyx (he was 88) and was in an acute care hospital for a month. From there he went to a private hospital and then to a care facility.
Hello Liz from another Liz--I think you just have to realize (easier said than done) that it is the disease talking...not him. He is not the same person as the one you married...because the disease is in control He's just never going to be the way he used to be--that boat has sailed. Try not to take all the "spying" personally--just blow it off. Just try to do things you like to do-- to get a break from him--even if you are doing simple, inexpensive things at home to relax and get your mind off it while you watch him. ("Supervise his safety" as the jargon goes.) Trashy paperbacks, needlework, word find books--whatever. I don't know what you do for a living, but perhaps it is easier to put on an outfit, go to work, and be with non-demented people through the day. As annoying as co-workers can be, at least they probably don't have AD. There's no question it's a lonely life--as anyone here can tell you. Your spouse is there, but yet they're not there. Outsiders don't get it, but those of us on this forum do. Swing by and "talk" with us when you need to--I know you'll get a lot of support and good advice from others who have been through it.
If he is spying on you, could you turn to the camera once in a while, wave, say "Hi ____, see I'm cleaning the garage floor (or whatever you are doing)," "Hi, remember me, I'm LIz your wife and I love you," "Hi, Liz here, isn't this camera stuff fun? I have a load of dirty clothes here in the basket. Are you going to help put them away?" Perhaps make a game of it, by talking to him through the camera.
Just like the Winter Lodge and the Lake Cottage, imagination can sometimes deflect the stress of the situation. Hang in there, we know this all too well.
Hi Liz. I have been trying to figure out how to describe how I have been feeling. You got it to a tee. Problem is I can't quite figure out what to do about it. I feel like I am a widow. The guy I married went away sometime in 2013. I don't know who this person is who is living in my house. I have fixed a bunch of broken stuff. The pool and sprinklers are now finally working the way they should. So I am trying to think of things he might enjoy doing and maybe I could have some fun getting out of the house once in awhile. But, just when I start feeling magnanimous about it he has a temper tantrum and raises his fist or pushes me around. In the Air Force we call this "shitting in your mess kit". So I am upstairs cleaning and shampooing carpets before the hot weather deserts us. I want to play golf! I feel like I am descending into madness. Sorry I have no solution. Just to know we are in the same boat. This place helps me get through it sometimes. I am just stuck right now.
Sorry you are going through this. I am fortunately in that my husband has not shown behaviors like that - yet and hopefully won't. I like the suggestion to make it a game that Marche gave. If you are like me, I get so tired of hearing it is the disease. After a while I don't care - I don't like it and want to escape.
I have come to the realization my depression is worse than I thought. I had rotator cuff surgery last October so the winter I was mostly stuck inside because of so much ice and snow. So during the winter my only contact was occasionally talking to the couple next door. I have continued that throughout the summer. I have a friend that use to live in the RV park but now lives in an apartment. I know I should go visit her but I don't. Why? Because I have nothing to talk about. My life revolves around the AD world (over 9 years). I have nothing going on to discuss with others. When I visit people for a long time it has been they talk and I listen. I am tired of one sided 'friendships' so I stay home with my computer.
Welcome to the site, Liz. The best piece of advice I ever got about having a spouse with this disease was, "If you don't take control of the situation, it will take control of you." In this regard, my attention was immediately drawn to your saying that you work 10 hours a day and then go home. IMO, that schedule is not sustainable for a full-time caregiver, much less for a caregiver of an Alz patient. Working so many hours is always tiring and often stressful. Then you get home and deal with his craziness, which is standard with Alz. In addition, your being away from your husband for such long stretches of time makes him even more insecure, so he is using the technology to follow you.
I worked full-time for most of the 10 years of my husband's illness. It took a lot out of me and the quality of my work suffered. I ended up using day care and home health aides to manage him but it was still horribly stressful trying to juggle everything. By the time he went into full-time care, I was physically and mentally exhausted. Maybe you are better at this than I was, but you still need to have a plan.
Hi LIZ, Thanks for sharing. I am not sure why AD causes paranoia but, I too k ow how it feels. When my wife sneaks up to look over my shoulder at the computer or my Kindle or my "dumb" phone I want to slap her but, I don't. We can be on the couch watching you tube videos I am selecting (they are sent via my Wi-Fi to our TV), then my wife will ask who you emailing. Remember their cognitive powers will decrease, and that you WILL be able to out smart their efforts, at least for the most part. So maybe there is some hope for us. It is just tiring.
Hi LIZ, Thanks for sharing. I am not sure why AD causes paranoia but, I too k ow how it feels. When my wife sneaks up to look over my shoulder at the computer or my Kindle or my "dumb" phone I want to slap her but, I don't. We can be on the couch watching you tube videos I am selecting (they are sent via my Wi-Fi to our TV), then my wife will ask who you emailing. Remember their cognitive powers will decrease, and that you WILL be able to out smart their efforts, at least for the most part. So maybe there is some hope for us. It is just tiring.
Another thought, I am not afraid to admit possible shortcomings in the mental health area. For example I met with my psychiatrist last week to talk about my meds and today, I met with my counselor and unloaded - again. My wife slept thru most of it in the waiting area. Ask your doctor. Don't be afraid to say you feel Depressed. Professional mental health professionals should not be over looked in this battle. Never fear that some marbles may be loose. After all, this will be one of the biggest mental battles in your life.
Another thought, I am not afraid to admit possible shortcomings in the mental health area. For example I met with my psychiatrist last week to talk about my meds and today, I met with my counselor and unloaded - again. My wife slept thru most of it in the waiting area. Ask your doctor. Don't be afraid to say you feel Depressed. Professional mental health professionals should not be over looked in this battle. Never fear that some marbles may be loose. After all, this will be one of the biggest mental battles in your life.
Liz, what everyone has said here is true but I have an additional thought: is there any way you can disable the camera at home and then claim that it must be some cable issue ... or something like that? Maybe you could even "send it out to get serviced" and then continue to tell him that "they are waiting for a part" or something like that.
As far as disabling the app on the phone, you can always blame it on the phone or, if it's a company phone (or even if it's not), perhaps you can tell him that the company won't allow you to have that app activated anymore, due to legal issues.
If your husband is not at a point where he will believe the 'cable issue' story and he's capable of calling the cable company and having a service person come to work on it, then this fib will not work. But I'm sure we can all think of an alternative story for you.
At this point in my husband's disease, I started lying (therapeutic fibbing) to him whenever I felt that it would be the best option to calm him down, reduce his stress/fear, make him feel safe, and help me retain my sanity and some semblance of control of the situation. Some people feel that they cannot break that bond with their spouse by lying to them, but I never felt bad about it because it worked exactly as I needed it to work.
Myrtle's adage "if you don't take control of the situation, it will take control of you" is spot on and you will find that you need to become quite creative in keeping peace and diminishing his paranoia/delusions/accusations through this stage. You can also search through past discussion threads on this site for those key words and may find ideas from others who have dealt with these same issues that might help you.
Please come back here often to rant, ask advice, and share your journey & pain. We are all here for you.
Another recurring problem. My DW forgets our adult children's telephone calls. They could call every day and by evening she forgets, then gets all worked up because "they never call". I can't help myself, I want and do defend our kids. She gets emotionally upset over this non-issue. Any suggestions?
Sometimes it works to say something like "Dontcha remember, so.and so called this morning, or just yesterday... and talked about xxxxx. He/she is going to be very busy for the next few days with a project at work... This kind of story seems to work with my DH.when he says.his sister never calls. I tell him I got an email.and we are trying to find a date to have lunch soon. Or I tell him she is out of town this week. Or I.ask him dontcha.remember,.she called yesterday and told us about her horse? Doesn't matter if it is true or not. Like Fiona said, it takes.awhile to feel comfy lying, but sometimes it is the best.solution. BTW, Hi Fiona, I think you were the one that taught me that a year or so ago. Good to see your name.
This has been noted on other threads but is worth repeating. At some point most patients will start asking about family members who have died. When they are reminded that the person is deceased they become agitated with grieving and not remembering. Thirty minutes later the whole scenario can play out again with renewed grieving and agitation, until the caregiver is as agitated as the patient.
Members on this board (including me) found it helpful to play along and say, "I heard from your brother while you were in the back yard and he may be stopping by sometime this week (be very vague)." That answers the question, does not bring up death, and gives a vague 'sometime in the future you will see them' answer.
Reasoning is impossible, as is expecting the AD patient to remember. The GOAL is to create the least amount of stress possible for both of you. A creative little fib can work wonders for both of you.
Rodstar 43, would it help if a written chart was kept of the phone calls? Maybe on a calendar or just a special piece of paper? Could your wife record the call as it happens? or would she need help to do that? Then there would be something tangible to refer back to.
Liz, I know that surrounding myself with supportive friends helped me through. I know you are working and it might be more difficult for you. But I had friends and family who were willing to come here for supper - enough friends so I had people over approximately once a week. My partner still had the ability to behave socially appropriately in social occasions. And it relieved my stress just to be able to converse with friends. I did not feel isolated. It was not too hard because they would bring part of the meal too. For some on this site it has been more difficult - friends have vanished. I know I was blessed, but I know that if I had not reached out for help I would not have found it. Friends near home, far away on the phone, and on this website kept me sane.
I am with Fiona, if you can find a way to disable the camera and the app for a period of time he is quite likely to have forgotten how to use it by the time you get around to having it fixed.
Another thing. Take care of you because you have to take care of you. Not just for his sake and for his care. Take care of you because you are a very important person. I will be keeping you in my thought and prayers, Liz. There is good information on this page, there is much more information on the many pages of this forum. Hugs.
I sure like the term therapeutic fibbing. I have tried not to lie to her but now that I know there is a good medical reason, then maybe I can be More creative. Goes against the grain though.
I think most of us had trouble telling our spouse "fiblets" and not feeling guilty. Goes against the marriage relationship we have had for so long. And many it goes against our value system. But we need to for our own sanity. It also often makes life less stressful for our spouse.
On this site I have heard them called fiblets. It becomes necessary sometimes for both your partner's sake and your own. Two examples:
When my love was looking for her "Nana" I would tell her that she was on Cape Cod with her aunt, that we would go see Nana when she got back. Both grandmother and aunt had passed.
I would get out of the car we had been riding in and by the time I got to the passenger side she would greet me with "I haven't seen you in so long". I'd answer with "Well I'm here now, my love."
Multiply that by ten or twelve each day. As long as what is said is said in love,it is okay. It will be forgotten in a moment anyway.
Maybe because I worked with the frail elderly for much of my life, I never minded repeating myself. And repeating myself. And repeating myself. That is one thing that never bothered me. And neither did the fibs.
Liz, we haven't heard back from you. Are you okay?
When my husband started with the "I want to go home." 10,000 times every evening--meaning his childhood home with his parents (long gone of course, parents dead for many years)--I would say something like this: "Well, we certainly aren't going to start driving at this time of night!"...not actually saying that we weren't going to go, just saying that we weren't leaving for a long trip in the evening. It helped somewhat.
All that brings to another thought, about every night my DW asks, after we went to bed, my mom has passed away right?, what about my dad, my brother, sister, your mother, your uncle, your aunt, my nephew etc. I answer Yes to each one. Is this just the sundowner syndrome? Should I answer differently? It gets old.
I can't believe how some computer program changes words. Church doubled check and the. Next day can hardly recognize my writing. Eeeeeeeeeeeerrrrrrrrrrrrrrrrr
I turned off spell check and few other things on the Kindle Fire HD and on ny "dumb" phone. Now I have to watch too close. errrrrrrrrrrrrrrrrree!!!!!!!!