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    • CommentAuthorbarbarakay
    • CommentTimeDec 17th 2007 edited
    I looked back at the days when we first started. Every time I tried to repair or get things fixed, it seemed we ended up in an argument. I later realized it was about losing control. This was their territory and you are taking it over. The hardest part of the early stages, is losing control of their world.

    Yes, this was a bad weekend! I had a headache which finally became a full blown migraine after I made a wonderful dinner and he wouldn't even taste it! My blood pressure was way up. Imitrex and a darkroom fixed it.
    • CommentAuthoringe
    • CommentTimeDec 18th 2007
    Joan and barbarakay, can I ever relate to your Monday blog!
    I seem to go from anger and resentment to depression and I just don't know how I will cope when things get worse. It's the constant having to accommodate that drives me nuts. For example, we are invited to O's cousin in the country for today. They know that I have great difficulty with night driving so they suggested we stay overnight. O's response was a flat-out "no". Instead he suggested we stay at "one of those places that have beds". Since I would still have to drive in the dark to get to a hotel that made no sense to me but I could not get through.
    I decided we will go and I will take a chance on the night driving. I am in need of conversation and some laughter.
    In reading what others go through in the later stages I really get scared. I don't think I have the compassion to cope.
    I haven't been weighing in a lot on some of the latest threads, and I guess that's because I'm been quite lucky when it comes to AD and temperament. So far(!)
    Sometimes Jeff's passivity disturbs me, especially when he seems to spend so much time dozing in front of the tv, and I wish he could show a tiny bit of spark or initiative. But I guess I should be counting my blessings.
    • CommentAuthorAdmin
    • CommentTimeDec 18th 2007

    Oh, I absolutely, positively agree with you that, in the very beginning, it has to do with losing control. I used to discuss that with Sid back in 2004. He didn't agree, but that's it for sure. Especially when, in his case, he was used to running the show at work. He always managed a group of employees, and left the managing of the house to me. Once he had to retire, he had nothing to manage - couple that with being aware that he was losing his memory and his cognitive abilitities - he fought me on everything.

    Now, he doesn't fight me on most complex "thinking" issues, but when it comes to something "physical", like plumbing or household gadgets, we end up in a mess like yesterday.

    • CommentAuthorLeighanne
    • CommentTimeDec 18th 2007
    I agree with the fact that the feeling of not being in charge or responsible for anything is frustrating for them. Robert and I talked (and cried) last night. He said some things along those lines. Up until 2 years ago, he was a social worker who worked with juveniles. He provided alot of guidance for those kids and now he can't get his own 2 to talk to him. I know it's frustrating for him.

    He told me last night that he never wants me to have to pick out his clothes for him - and that he never wants to live in a nursing home. He said that he would not live like that. That's the first time in a while that it seems like he knows what might be coming with his illness. His Grandfather had dementia. He lived with Robert and his family until he had to be placed in a nursing home. Robert was always dilligent about visiting his Grandfather. At his Grandmother's funeral, Robert was responsible for getting Grandpa dressed and ready for the funeral. I think that's where his comments were based.

    It broke my heart. I didn't know what to say to him. Then he looked at me and cried "I've loved you with my whole heart". I just sobbed. It is so unfair.

    We had a better morning this morning. Hopefully, things will be on the upward swing for a while.

    • CommentAuthorJane*
    • CommentTimeDec 18th 2007
    Leighanne, it will be alright. You will have ups and downs, even before Robert had this illness I am sure it was that way. It is with all of us. The problem with this disease is that the reasoning goes and you feel you are all alone. Just remember though he cannot help that this has happened to him. You are the most important person in his life, try not to forget the good times you have had, and yes the love that you still share. Let no one cause you to forget that. Be there for each other, do not fail to stand beside him.
    • CommentAuthorfaith&hope
    • CommentTimeDec 18th 2007
    WE are in the early (?) stages of MCI - diagnosed two years ago. We had long drawn out arguments for several years up until about 6 months ago. I couldn't understand why he couldn't see black and white issues. No matter how I laid it out for him, he would argue, blame me for whatever, get in a bad mood for days. After reading these boards, going to support groups, I just don't go there anymore trying to get him to understand issues. I make the decisions, I will consult with him, if he doesn't "see" it, I do what needs to be done. Most of the time, once I have made the decision, he seems relieved. I know, tho, that if we had to come to an agreement, it would never happen. While I think control is a big part, for my husband I think the issue is more acknowledging that he has an illness. If I just go ahead and do it, he doesn't have to go through the process of not being able to "see" the issue and have to become defensive.
    • CommentAuthorlongyears
    • CommentTimeApr 20th 2008 edited
    Longyears, welcome!

    This is a great group! I'm glad I found it too! You haven't said whether or not a doctor has given your husband a diagnosis. Has your husband been tested for AD as yet? Has he had an MRI and a PET scan? Is he unwilling to be tested at this point and in denial that anything is wrong? The reason for my questions is that in your other discussion, you seem to be doing a lot of research to try to pinpoint what he has and what you can do to help your husband be back on an even keel. We would all love to be able to do that, believe me!

    As to whether or not to continue to travel by air, it depends on many factors - planning ahead and being prepared for any contingency (long lines; canceled flights; lost luggage; etc.). The main thing is patience. Our last trip was wonderful until we were on the way home. After two glorious weeks in England and Scotland, we got stuck in Dallas due to an airline's mechanical problems followed by a thunderstorm. After having been up for 13 hours, my husband wanted to go to bed; the airline kept putting us on standby and wouldn't help us by rescheduling a flight for the next day (at that point). He got mad and left and I couldn't stop him. He left the terminal (we discovered 5 hours later that he took a hotel shuttle - he really wanted to go to bed!) and it took the airport security 5 hours to find him. They told me to remain at the ticket counter in case he came back. He didn't. Needless to say, my having been up for 24 hours, the last 16 without food or rest and the last 5 not knowing where my husband was - made me state that I wasn't traveling with him again, even though I knew it was circumstances that caused the issue. It has been a year now, and I'm chancing a flight in July from Little Rock to Houston, with relatives meeting us at the airport. I'll let everyone know how it goes!

    As far as driving, we have all had totally different experiences, and none of us wanted to take that freedom away, but at some point, you have to. And that point is when they are a danger to themselves and others on the road. His doctor will help you decide when the time is right. Unless you live in a state that takes away the license upon diagnosis of AD. There are several discussions on driving here.

    Again, welcome!
    Dear Longyears: I'm glad you found this terrific site, just sorry it had to be. I hate to say this, but your husband should not be driving and it is your responsibility to have the doc report him to the DMV or do it yourself w/out his knowing. If he gets into an accident, you could lose everything because you know he has dementia. When he says can't you just TRUST me, the factual answer is 'no, you cannot be trusted, because you have AD,' but you can't say that to him because it will cause all sorts of conflicts until you realize what is happening.

    I really want to help here, it is so hard because AD is so hard, but Longyears, you are overthinking it logically and you have to realize that logic, reasoning, explaining--all such things--do not work when dealing w/AD. Leaving oranges out for his diabetes is very good, many AD patients have many other medical conditions that make things harder, but really don't impact the AD. Please, trust me and others who will hopefully post and agree, you have to learn to trick him, lie, use subterfuse, never, never agrue--he will always be right in his mind and you have to learn to go into his reality because he no longer lives in ours. He is frightened and confused, being defensive, trying to keep it together, he knows something is wrong. He's constantly under stress--and, no, adrenaline has little to do w/it. His brain cells are not connecting properly. Heat and driving may set him off, but so will a dish of pudding--we never know. Your main goal is to keep calm and serenity in the home, and you will not always be successful, but we try. None of this is easy, everyone on this board will agree to that, but bottom line is these are our only options, there is no way we can make things right, avoid conflicts, we are dealing w/a brain disease that makes no sense and altho our loved ones may look and sound the same, they no longer are the person we married. We have to accept that and learn to live w/it the best way that we can.

    Please go to and read 'What you need to Know.' It will help you to understand how to deal with the disease and what HE is going thru, and stay with us, ask questions, vent--whatever you need and feel, the people here will always help. We are the ones who understand, been there--done that.
    Bettyhere is totally right. She speaks from experience. Also, if you haven't read "The 36-Hour Day" you need to get a copy. It is out in paperback now, and it really helps explain a lot of things.

    I can't believe how sneaky I've become in order to get my husband to do what he needs to do! :)

    Mainly I talk to him in a soft voice, never ask him "why" he can't do what he could do yesterday, never bother to ask him where he put the dog's leash, and I believe the dogs over him when he says he fed them and they are telling me he hasn't! :)

    Joan and some of the others are fortunate enough that their spouses can still carry on a conversation. A three word sentence is all I get any more. He wants to talk more, he just can't get the words that are in his brain to come out of his mouth.
    • CommentAuthorlongyears
    • CommentTimeApr 22nd 2008 edited
    • CommentAuthorcarewife
    • CommentTimeApr 22nd 2008
    Mary and Bettyhere gave astute and needed advice. As to using subterfuge. being sneaky...most spouses of AD people learn they must resort to that manner of handling certain situations but I in a facetious way prefer to think of it as "creative thinking" . It is no longer needed with my husband, but in the past, I didn't hesitate to be "creative" when needed as I knew that I was more capable in making the correct decisions and was responsible for helping him now that he could not help himself.