I've been hearing for two years now about "taking care of the caregiver." So, finally, I take a three day, two night trip, a wonderful one I might add, and I am greeted with selfishness on the part of my spouse both before and after the trip. He has been angry at me since I returned home last weekend. He told me today I should never go anywhere without him, that I am married to him, and he will NEVER stand for me doing it again. I left him alone, he said, and that was wrong of me.
Bev, one of the first signs of Alzheimer's is the "putting oneself first" and selfishness is right up there at the top. My husband was always wanting to do whatever I wanted, and always shared everything as I did with him. After AD, he hid food, he insisted on watching only what he wanted to watch and would throw the remote on the floor if we asked him to wait another 5 minutes until our show was over to change stations.
Yes, it will get worse. All you can do is keep telling yourself it is the AD and not him and not feel guilty and continue to take those trips. He'll live through it. Just remember don't respond to his outbursts - just start talking about something totally unrelated. It throws them off...and then they will eventually forget. If he starts to get violent, that is different...you will need to see his doctor and get medication.
The changes in their personality hurts like the devil...
Ditto what Mary said. Believe me, I know how hurtful the "me, me, me, all about me" behavior can be. You just have to keep saying to yourself (through clenched teeth) - "It's brain damage. It's brain damage. It's brain damage."
Bev, I know what you mean. Every night my DH asks if we are going to sleep together & I say,"Haven't we slept together every night?' & when I don't want to go to bed exactly when he does he says, "I thought we were husband & wife, you know how much I love you." It's smothering me. I know I should appreciate the fact that he still knows that we love each other, but he is like a little puppy following me around most of the time & like I said it is smothering me.
I can attest to what Mary said. That behavior is true Alzheimer's... Pouting, tantrums, and oh yes! wanting the change the channel the last ten minutes of a show...OR ELSE. I wish these words could make you feel better.I can only promise you that as time goes on, you'll understand more deeply that that is NOT your husband, that's the disease talking. Only when I reached that stage, did his words stop affecting me so much. We, too, go through stages of learning and acceptance as the disease changes our loved one. I'm so sorry.
If I thought it was all dementia I wouldn't feel this way, but he has always acted awful whenever I've gone on a trip without him, and those I can account on two fingers, both of which were with my daughter. I thought he would forget about this trip but it's not happening. He says I'm not acting like I love or care for him anymore, that I'm acting distant from him, just because I went on that trip. I don't think I can go through this again, it'll be a long time before I do this again.
I know that most of you still want to attribute all of this to his dementia, but I don't. I do think it has escalated it though. I'm afraid I've been living with a very controlling man for most of my marriage and his disease is just making it worse.
bev- there are other posts and topics about how dementia brings out the old personality triple fold. as in. if your husband was controlling or abusive or aggressive prior to dementia, they usuallly are that way only worse once the disease sets in. some have total personality changes with meds too. i think alot of us have been thru what you are seeing. not just the dementia but the egotistical= narcistic type personality that is only referencing the 'me' syndrome. no apathy whatsoever for the spouse or what we go thru. i always got this type of behaviour and the guilt trip over phone calls from my family while DH was aware of what i was doing. they dont want to share anything or anyone. security issues may be starting to form which will begin the shadowing stage. that will drive you nuts too but with time we all do our best to adjust. good luck divvi
My husband keeps saying I'm not loving any more and I feel guilty because I don't feel he is my partner any more so I don't want to be close. But what helped me is something that Emily wrote: the idea that even if I act loving he can't take it in because his receiver is broken. He thinks I am not giving it, but it is actually that he can't receive it. http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=172
Yes, this all hits home. DH is very changeable: one moment he's eating all the meat (I've taken to filling our plates from the stove instead of putting food on the table). The next moment he will refuse to eat something he likes because he'a afraid I haven't had enough. But mostly yes, the selfishness, very uncharactistic for him.
Elaine, I had the going to bed together issue too. I WILL NOT go to bed at 9 pm. So I started telling him when I tucked him in that I had to call my Mom and would join him soon. He knows that those are hour-long conversations, very boring for him, so he was OK with it and then falls asleep much faster than if I get in beside him and wait till he's sleeping to get out again. Once in a while he will say "But you called her last night" and I'll tell him she didn't answer last night. FIblets, fiblets.
DO NOT get into the habit of going to bed when they go to bed. The deeper into the disease, the earlier they need to go to bed because they need the sleep. The time will come when the only alone time you have is the few hours between when they go to bed and when you do and you will treasure those hours. Get out of the habit NOW.
Thanks to all for your suggestions. I should mention that my husband was never physically abusive but he was controlling. I got used to it, of course, as we went further into marriage and was able to get my way even if he didn't always like it. I really thought I could handle whatever happens with this disease. I'd been able to answer his questions over and over and never get upset. But this is really upsetting me, the idea that I won't be able to go anywhere without him getting angry for days. I even thought he would forget all about it since he sometimes doesn't remember what happened or what was said 10 minutes ago. I do appreciate being able to come here for advice. I suppose yesterday was just a really bad day and I wasn't myself at all.
JeanetteB & Starling, Thanks for your comments. My problem is that when I refuse to go to bed when he wants he will (begrudingly) go by himself, but then 10 minutes later he'll come looking for me wondering why I don't want to come to bed ("Aren't we married? Aren't we husband & wife?") He just doesn't fall asleep easily like he used to. Same if I get up during the night. I can't even roll over in bed & he wakes up. To be truthful, sometimes by 9 pm I am so exhausted that I am ready to go to bed. But I know that I need my alone time & I know I will treasure that time.
Between the hours of midnight or so and anywhere up to 4 or 5 in the morning I sit here and write to the forums or the blogs or comment on articles in the various newspapers. I love hobgobling with the Economist online, a British newspaper that draws a lot of one supposes Eton grad-u-ates. I even feel human sometimes although when you put me to your ear you can hear the ocean roar.
Two nights ago I went to bed at 1am because I was being a good boy. I listened to myself that I have to come around better on what's happening. Well. Within minutes my wife who never snores started landing a 747 in the middle of a war. There was so much weird noise coming out of that small face I just stared at her in disbelief.
I shrugged, got up, made a pot of coffee and turned the computer back on. Coffee doesn't affect me at all. Coffee doesn't affect me at all. It's all in the power naps. I always hated naps because I never felt right after. Now I'm a power nap trapeze artist. My head drops, I sleep for anywhere between 7 to 20 minutes and my head bobs back up.
Once thing is abundantly clear. Women have it much tougher. Not just the size. The roles. When my wife says occasionally are you coming to bed I just say no and she doesn't question it. I'm not sure if it's because I have a penis or testosterone or hair on my chest. As a politician recently said, "I'm the decider" and I always have been. So I tuck her in and she accepts it.
I have no idea whatsoever what I would do if I needed this time and my husband was acting like a typical male. I have to think about that. The only thought I have is "if you think I'm getting into bed with that thing..." and that's not terribly helpful.
Speaking of that, my wife who's always been loving and responsive though never initiating now likes to pull up her nightgown or top and show off various parts. She tells me I'm handsome and looks at me with that "ah ha I like what I see" look. The times I took her up on that she either wondered what I was doing or was a little taken aback. None of that is her personality or the woman I know.
Yesterday we went for a walk in one of the city parks we both liked and I saw this dog trying to hump the leg of one of the people standing around talking. They laughed and brushed him away. I wanted to give him the thumbs up. You go girl. I feel your pain. At least I remember your pain.
It's a wonderful life. Sometimes more like a cheap sitcom shot in Bolivia with a bad camera and non union amateurs who would rather be somewhere else and the director is someone with money's idiot son who's already failed at everything else. "Ok people! Let's try it one more time!" It beats being slave labor building the pyramids. At least I hope it does.
Wolf, You ar a RIOT! (but then, who likes riots?) I hope this isn't TMI, but my DH still likes to "get intimate". So we do, but more for him than me. I feel that it is at least one pleasure that he can have & that we don't argue about. Did you say that your DW is in her 50"s? well my DH is only 63 & I am 61 so this is definitel happening wayyyy to soon in our lives. Maybe we'll get our reward in heaven!
Bev, I sure can relate to you when you said, " I'm afraid I've been living with a very controlling man for most of my marriage and his disease is just making it worse". Oldlady
Pamsc: My husband did what you say above just a few days ago. He kept on asking me if I loved him anymore, because he had the feeling I didn't. This went on for a whole day and into the night. He was actually scaring me because he was getting confrontational and shouting, saying I was his wife and I was supposed to do certain things for him (if you get what I mean). This came out of nowhere and occurred until nearly 1 a.m. The next day he didn't remember any of it, but I was so shaken it was difficult to act like nothing happened. He has calmed down and seems okay, but I'm so afraid it'll happen again. Your saying "his receiver is broken" may be true. He never questioned my love for him before and those threats have really gotten to me.
oldlady: How bad is it now? And, how does it make you feel? Do you feel loving towards him, or does this control issue pose a problem for you and your feelings? He really scared me the other night. I threatened to call the police if he didn't stop. He seems fine now, but is slightly different than before the other day. When I do things for him he thanks me every time and tells me how grateful he is. It's strange....
Bev, It sounds like your DH is going thru what mine is. Sometimes if we aren't in the same room he thnks we aren't together & that I don't love him. I try to tell him that just because we aren't in the same room that we are still together, after all we are in the same house, but silly me.....I can tell by the look on his face that he just can't process what I am trying to tell him. But on the other hand, like your DH, mine thanks me at times for doing things for him. It isn't strange......it's the disease!
I am fortunate in that we have always gone to bed at different times so he does not expect me to go to bed with him. If this will change remains to be seen. I am a night owl and he is early to bed. Use to be early to rise but now he sleep later than me. He goes to bed at the latest 10 and sleeps until 9 or 10. I go to bed at midnight and watch my recorded soap opera then to sleep and am awake about 8.
elaineH you are fortunate your husband can still get an erection. My hb, and many here, has had ED problems since his 40s (now 62). Once in a while he wants to try, but he can't keep it up. The last time he started foreplay but stopped - I think he forgot what he was wanting to do.
Charlotte, you are right, I am fortunate. But like I said it's more for him than me. We pretty much have always gone to bed at the same time, but I could wake up in the middle of the night & he wouldn't wake up. Now it's different. Charlotte, on another note, I see from other posts that you have an RV. Have you been RVing a long time? The reason I ask is that I (or I should say we) just bought a small travel trailer (called an r-pod...look it up on the internet) & we are going camping this weekend. We have never done anything like this so my neighbor is going to the campground with us (it's local) to show us (or I should say ME) how to set up the hose hookups & everything. I am looking forward to it because I am hoping that once I know how to do all that, that we can go camping & sightseeing. We have a lot of good places to go camping within a few hours from here. How does you DH do with camping?
Elaine - we have been camping all our lives. I was a girl scout and farm girl, hb was a boy scout. We bought a glorified tent trailer the year we were married and have progressed up to a motorhome. In the mid 90s we lived full time in a travel trailer with a teenage boy and girl. We bought the MH in 2002 and moved into it in 2004. So yes, I do have lots of rv-ing experience. email me if you want to ask more. Your small trailer will be more challenging than my MH - I have a separate shower, your shower and toilet are one and the same. Just plan on easy meals this first time like sandwiches, frozen meals, etc. - nothing that takes a lot of cooking. Less stress and clean up that way.