He has a meeting with his Lions club tonight and he wants me to go because it's pot luck and spouses are invited. Now I get only 2 evening for several hours alone without him per month....some resprite and house to myself time. When I said I didn't want to go because I need some alone time and I just worked a 24 hour shift he had a fit! I also had made something for him to take. He informed me that I was selfish and SELF ABSORBED! Now I don't need to tell anyone here how much of our time and energy we spend on them and their needs, with them only seeing their own small world.
I am so pi**ed off right now. Time to find some rum and have a couple!
I think he got it wrong - he is self absorbed, but you knew that. Thought I would just confirm that it is him not you. Stay home, enjoy yourself and tell him to go enjoy himself.
I do believe most of the time many of our spouses only think about themselves. They just don't seem to understand we are part of the picture and all the things that have been added to what use to be our "normal" routine. And, the thought that we need time alone without them seldom seems to be a part of their understanding at all.
You certainly need your alone time and I can understand that and I would never question why some one feels the importance of down time especailly when we are so tired. As the saying goes..."this too shall pass" Hopefully he won't remember you didn't go. Have a few rum and coke or whatever and put it on my tab.
yes they tend to become quite absorbed and tolerant to their own needs alone. it can make for a very trying time to have to deal with it. introverts! sorry you are feeling low!
Interesting discussion in my support group during one gathering last year. We drop spouses off at 10 a.m. for music, art, games, visiting, etc., while spouses shop, return home to clean, go to the library or whatever and return for them about 12:30. Not one of our spouses ever asks(ed) what we did while they were with their friends. I'm not sure I'd call it self-absorption because I think that takes some "thinking"; I don't think they're capable of that. Of course, perhaps in the earliest stages if one were already self-seeking......
I just find DH becoming incapable of understanding any of my needs. I don't think it's a deliberate thing - I just don't think it occurs to him that I have feelings.
I totally agree...my dh is incapable of understanding. The only hope I have that there is still a place in his heart for my welfare is when we go to bed and most of the time he tells me "Thank You" for all you do for me.
Agree. We are dealing with childlike behavior....it's all about me. I used to be very hurt by comments and his total lack of empathy until I realized not to take it personally. It was all he was capable of expressing. Now I did not say that I still did not consider murdering him at times, LOL, it just made it easier to accept. Funny now that we are in the later stages often he will ask if I am okay and most of the time says thank you. The mind is an awesome thing!
It is interesting that L accepts my monthly support group (been going for 2.5 years). It thought there would be an argument when I said I was going, but there was none. She has never asked me about what we do. She doesn't complain that I come home late (sometimes she can't sleep until I am in bed with her). So she accepts it, accepts that I need it, and (thankfully) has never asked me about it.
I think as their world becomes smaller and smaller, it does become "all about me". I don't mind for the most part because I know there is no way in hell I would want to trade places. How sad for them...all the limits on everything. I try to tell myself to enjoy the time I have with him because it will end and I will have all that time to myself whether I want it or not.
Usually I get told I am "stupid" followed with "I use to think you were smart" and for the added kicker of "you do nothing". Ok so inside I actually laugh to myself and in my mind I say "stupid for staying" ......"Still I am at least presently smarter than you"......"and try to nothing without me". And actually none of those comments bothers me but what does effect me is he just plain can't understand anything. Now we are at the not being able to swollow pills, can't understand how to do it past the first morning pills. How do you explain swollow them. Tried crusing up in applesauce, yogurt and that causes faces at the taste. See PCP tomorrow going to check on liquid choices of his drugs
Terry, I have the same thing with Lloyd and his pills. The doctor changed his Neurontin to liquid, but he still takes Marinol and Coumadin and I am currently trying to eliminate the Namenda since the neuro says it no longer does anything for him. I put the pills in his mouth and give him a drink and he gets those pills in his cheek that fast. I ask "are they down?" and he says "yes" and proceeds to chew them up. I've done the applesauce and ice cream and yogurt, too. As long as I get them in him, I've done my "job". I guess we're the only ones to take their abuse when they become frustrated and angry. And some of it can be comical in a twisted sort of way. I had to giggle at the "try to do anything without me".
Terry54, I also went through the verbal abuse of being called stupid & other names I won't write here. He doesn't do that anymore, in fact he often thanks me & tells me he loves me. I know I should be thankful, but a lot of the time I say I love you to him it is without any emotion in my voice. I'm fortunate that he can still swallow his pills & he doesn't give me any grief about taking them.
Linda Mc, my DH has been on Namenda for almost 6 years & when I took him off a year & a half ago his behavior changed & he became a bit aggressive again, so I started him back on & he calmed right down (someone here said that it is known to help with aggression). I also took him off at the beginning of this year & within a week he seemed to be in a decline so I got him back on them. I know that they” say that Aricept & Namenda aren't effective after 3 years, but I am convinced that at least the Namenda is still helping him. So I guess what I am saying is, after you take him off see if he has any reaction either aggression or decline.
Elaine good to know your feedback on Namenda, we see PCP on Wednesday and that's one he was thinking of stopping. I never thought the Aricept did anything for Hubby but that night time Namenda hasn't been getting down in the swollow dance at night. The tiny risperal pill fits in the yogurt strawberry and the ativan crushes easy.....it's the Melatonin that must taste bad ? And Mary when he calls me stupid, I say to myself, I must be .......I am still here while you call me stupid. Look I am grateful he's not calling me fat, then I would lose it !!! :) I keep thinking he's my brick wall, I can't move him so how can I get around him .........my daily question
My neuro told me the reason they say Namenda and other drugs like that are only affective for 3 years...is because they quit the testing of the drugs after 2 or 3 years and they don't really know how long they can be affective. I too wanted to take my dh off those drugs because he has been on them for 6 years and his neuro said ...NO NO NO.
I know for me when he calls me names it really contribute to the emotional divorce. Yes.....stupid for staying but then most of us just couldn't walk away....I still love him but I definetly do NOT like him.
And you know Amber we don't have to like them ! And a big Yes to loving him. In this journey when he's good, he's the best and when he's bad he's the best at it !!! And definately going to insist on the Namenda continuance, don't need any thing to help Rage issues. Thanks again Judith as well for info.
My hb is still on Namenda after 7 years because his neuro says it helps with agitation. I will go to the moon and back to avoid agitation!
I remember the early stage, when I told my husband that he was becoming self-centered, didn't act anything like he used to (a waste of breath). His response was "You are the one who has changed." Interesting, huh? In retrospect, he was right--I was no longer the happy, easygoing person I was when he was well. It was impossible to be that person while coping with his illness.
Marilyn...that's EXACTLY what Jeff said. That I had changed. Unquestionably this IS the case, both for the reason you state, and because--whomever we are--we are being experienced through the new and unimproved filter of Alzheimer's.
Amber, is he entering the stage where he could be "lost" without you? That you are his anchor? That he is lashing out from fear of being away from you? They do get that way - this might not be the case with him right now. I have no way of knowing.
It kills us when they forget our names, that we are their wives (or husbands), that they say other things that hurt us and they forget it in minutes, where we remember it forever. This disease is so horrible for everyone!!!
Mary.....I think you are right. When I was gone for several days and my daughter was here, he had to say he really loved me, to me each time I called and when I'm here, nothing.
Something to think about.....but can I still bang his head against a wall. :)
Elaine, I agree about the Namenda. I tried again to take him off the one 10mg he takes each day. I put him back on today. I have tried several times because his neuro said it wasn't doing anything for him. Well, I got news for him. Without it, he swings at the TV. He had to ride in the back seat with child locks on. And he hit me a couple times. I just smack him back so it stings a little and tell him we can both be mean. Amber---gently. It may knock some of that amyloid plaque loose. JUST KIDDING! Wish it were that easy!
Sobering PCP visit......increase of Rispwhatever .......Aricept gone, Namenda continued at my request. PCP remark on significant decline in 6 months. Hired a 2nd aid (male) to take him fishing (he thinks he's fishing) in the afternoons. Plan to give him the best summer I can .....I know it's the last of any knowing. Was told about my need for Respite ...blah blah blah couldn't hear anything past the stunning words ............"hospice within a year". I know they don't know and neither do I, what I do know is saddly he knows, crying gags of "I don't want to leave you". His brain/heart knows we just can't stop this train..............what a hell to know and not understand all at the same time.
Terry, Lloyd's neuro told us 18 months ago to put Lloyd in a nursing home. He wanted him in a wheelchair a year ago. I made up my mind that I would do things at my pace since I am the one doing everything. He is still at home and walking. Can't do much else. Only you will know when it is time to do anything that drastic. It is your decision and yours alone!
On wednesday I brought Dh home from the hospital...right up to the last minute they tried to talk me into sending him to a tightly locked prison like NH 2 hours away..I couldn't do it...i would hardly ever get to see him as i don't drive up the freeway, heavy traffic! All because they think he'll wear me out...because, at the hospital with all the noise and confusion there he couldn't sleep and was up at night getting into the other rooms and peoples stuff. I tried telling them he doesn't have all that stuff to get into at home, he sleeps all night.
They cleared up his UTI, and is back on respiridone, but this time .25mg only at bedtime, last time it was in the morning and it seemed to make him more agitated. So far so good, he's ALMOST like his old self...a little more confused, but not agitated. He's still looks after himself with showering, toileting and feeding He's back to day care 3 days a week...thank goodness for day care! I had to have him back...just didn't want to give up on him too soon, I have to kniow in my heart that I did my all and best...no regrets.
Not trying to be a wet blanket here but it was Namenda that made my husband violent. When we increased his dosage to 10 mg he became dillusional and physically violent. 25% of dementia patients become violent on Namenda.
LFL sorry to hear about your husband, but latest findings support that Namenda will reduce agressiveness, sorry it did not work in your situation. To those who wish to keep their loved ones home as long as we can....hang in there....familiar surroundings are special.
Keep in mind that Namenda was developed for AD; if it's used on a patient with another dx--FTD, for example--it may produce problems such as LFL described above.
So sorry for all you are experiencing. As Joan always says if you have seen one dementia patient you only have one view because each person is an individual. While they display similarities they may respond to medications differently. What is good for one may make another violent. Mary hit right on when she said that fear and the inability to reason may make him violent and unreasonable. The key is to remember that it is the illness coming out and not the real person that you knew and loved. If your to survive you need to remember sick people display their fears in many different ways. Dementia is an uncurable illness and fear is always there for the patient. May God bless you and give you strength. Bruce D *
When my dh comments about his illness he usually says: "I'm not that bad" and I always agree with him even though I know he is getting worse by the week. But, I always tell him, at least you don't have any pain. And, that makes him smile.