Hi, my name is Linda, and today I finally decided I needed some support. My husband of 27 years was diagnosed 2 years ago with EOAD, he will be 60 in a couple of months. Unfortunately, his disposition is totally hard to live with. He has been "punishing" me for about a week now, not talking much, real cold and totally to himself. Only talks when he has to. We go through some of the strangest things. I have been in denial for quite some time, but it is occuring to me that in fact it must be the disease. He has been on meds the whole time, so doesn't seem to be progressing very fast, at least for now. Sometimes...this sounds awful, I almost wish for the time when he can no longer talk or remember things, because it seems like it would hurt less than the awful things he says now. I try to tell myself it is the disease, but my emotions just get the best of me at times. I am only 54, and like most of you, had no idea I would be facing this along with taking care of aging parents, grandchildren, and everything else that needs to be handled. I am so thankful to all who share their experiences, as it has helped me not to feel so alone, and to know there are others facing the same and worse. Thanks again!
Linda you are definitely not alone....we all face situations very similiar to yours...and yes they are capable of saying some very nasty things that can devastate you. I constantly have to remind myself that it is the disease talking (but I don't always believe it. We are all here to provide whatever support we can, and I am glad that you found this place...pretty soon it will become home...
Welcome to my website. I left your post in the Welcome New Members section, but added it here, so everyone would find you.
You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 3 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
I have written a lot of blogs about the hateful things my husband has said to me, and to others about me, and the deep pain it has caused. Thankfully, the meds. have calmed those rages, but I fully understand how stressful and damaging it can be. For a glimpse into how similar spousal problems are, please log onto the home page - www.thealzheimerspouse.com, click on Previous Blogs on the left, and check these out - #87, 129, 138, 167, 209, 231, 261,262. The earlier ones will take a long time to load because the ad links are outdated, and I have not had a chance to update them. The others will load quickly and easily.
Welome Linda I am quite a new member myself,sorry your husband is EOAD and you are having to face this at so young an age ,yes they do say hurtful things at times.Don also got fixations on people and used to say things about them in a loud voice which was very embarrassing.Sometimes he loves me sometimes he hates me .I too have to remember its the disease talking but it is hard to do.Don is in full time care now since last Sept hugs Rosie
Good morning Linda and welcome. it just crushes you when they say/do such hurtful things to us. we rationalize and say they'd never do or say that in their right minds. then our minds start playing tricks and try to complicate matters by confusing us more. is it the disease or do they really feel this way? there are many of us here in our 50's who have been caregiving for some time. me- a decade now. so i was in my late 40's when i started. i also wish i had suppport like this group from day one. i would have been a much better caregiver from the learning curves that can be had from those before us. hope you find your peace here among friends who walk the walk right by your side. divvi
Welcome to our world. I am also an EOAD spouse, facing all the challenges you listed. I'm determined to survive this ordeal intact (I hope) and I know that this website will have a lot to do with it. My husband was dx 4 yrs ago at age 60, when I was 56. As you know, EOAD brings its own special issues--giving up work, driving, friends/family still working, along with possible multigenerational caregiving, as you mentioned. I'm glad you found this resource.
Hi & Welcome Linda, As the others have mentioned, I am sorry for your need to join our family, however, I am sure you will find comfort here. My husband is 58 years old with FTD. His memory problems started about 8 years ago. Please don't beat yourself up about wishing he could no longer speak, I know I have had that wish in the past. Unless you are a Saint, we are all human & can only take so much. Even though your brain knows it is the disease speaking, you heart still hurts. Please feel free to post at anytime. I believe this website was a godsend to me. Hugs, Kadee
Thank you all again, as I sit here reading this with tears, I so wish I had done this sooner. I may be asking this in the wrong spot, but, I am wondering if it is mean to stay away, or ignore my DH when he is in a funk. He hasn't really talked to me in a week, as I said seems to be sort of a punishment, so after trying several times to approach him, give him a kiss, talk to him, I finally just feel like Okay, whatever you want. But there is a part of me that feels so mean. I have always been the one to approach him with problems between us, communication has never been one of his strong points, so not doing that makes me feel guilty. But, then if I do I have a feeling it will escalate to a huge problem, which has happened in the past. One night he went out and locked himself in the truck for hours in the middle of the night. He had packed his bags and said he was leaving me, but I hid the keys. BAD NIGHT!!! So my question is, although he feels I am awful, I just don't know if talking or trying to see what his problem is this time even works for us. Maybe some of you have experienced the same thing, and I know there is not an answer the covers everyone, but any feedback would be appreciated. Thanks again, Linda
Linda, its not unusual for us to want to keep the peace and have ease of mind sometimes that means avoiding issues. i see you said DH was diagnosed 2 yrs ago. is his Dx AD or FTD or vascular dementia, do you know for sure.? some alz meds we find do not work well with certain dementias. if your DH is on AD meds and hes trying to leave and pack his bags etc in the middle of the nite, i think that warrants a talk with his dr and maybe he could need a tweaking of his medicines to help him smoothe thru this easier? i know many have success with the seroquel and or an antidepressant. just a thought. divvi
Linda I am so glad you are here. My husband did take off for parts unknown for over 24 hours. Make copies of your husband's license and car registration in case he does get a hold of the keys and drives off.
thanks bluedaze, I'll do that. This is still so new to me, I don't think of all those things. Divvi, DH was diagnosed with EOAD, he is on the Exelon patch. I did talk to the doc, and had some med changes, and also started him on antidepressants. So far things have been calmer. I really do try however to not let it get to that point somehow, it just still doesn't feel right to ignore him and not try to work it out, but sort of getting the idea that is impossible. Thanks Linda
Linda, a belated welcome to you! I see that the others have quickly given you hugs and welcomes and advice, so at this point I'll just add my hugs to the stack! You can never have too many hugs! (((((HUGS))))
One thing you have to learn to remember - and it is a difficult one - is that their reasoning button is broken. We say that around here all of the time. It's broken, and it can't be fixed. So you do have to learn to never, ever argue with them or try to reason with them. If it is clearly a zebra, and he says it's an elephant, it's an elephant. End of discussion. When I told that to our neurologist, he congratulated me. He said I had finally "gotten it". I have had so many hard lessons to learn through this journey, and that was one of the hardest. None of this is easy, and none of it will come to you all at once. It's a process.
It's been really tough for me to learn all of this, but anxiety attacks, high blood pressure attacks, and losing my breath from stress, finally made me give up the fight. If he says it's a moose, and it's a frog, okay, fine, it's a moose. It's not worth my health to argue about it.
Linda--It's a cliche, but you really will have to "pick your battles". Unless it involves safety issues, as Joan said above, they are always right! In the beginning, I know I made it harder on both of us by expecting him to react the way he always had. Then, somehow, I realized that I could "manage" his behavior--with some help from Seroquel--by never saying anything that would trigger bad behavior. If you are lucky, you will be able to figure out what the triggers are and stay away from them at all costs! You say communication has never been his strong point--even in people who were good communicators--this disease throws up tremendous roadblocks in that area. My gut tells me "talking or seeing what his problem is" will not produce the results you are looking for.
Just adding my little note of welcome too. This place has been a saving grace for me. Am continually thankful for the wise suggestions here and for the support. Again, welcome.
Linda: I felt the same way you are now feeling when I found this website. What a relief to find out that others were experiencing the same thing that I was and they understood. A real blessing.
My only complaint is that these folks express my complaints and feelings before I do. Oh well.....
This website has been a sanity saver for me. Welcome
thanks for all the advice, I decided to tell DH that I realized he was right, and I apologized, end of discussion. He then told me he thought he needed to up his meds, which was good in my book. He hates meds, and so getting him to take or increase meds is pretty difficult. It being his decision was wonderful. Seems much more at ease and back to...normal?????? :)
Mimi, I too would like to welcome you to our "forum family". Great news that he feels his medications need to be adjusted. I am glad he seems more "normal" today. How are you feeling? It is difficult when you realize nothing will ever be as it once was. We all understand ((hugs))
Linda, Welcome. I am also relatively new here. My husband was diagnosed over a year ago at age 60. He is on Aricept, Namenda, Cymbalta and Clonazepam. He gets quiet and moody, but he is more angry at the circumstances than at me, but I am the only one here, so sometimes it feels like he is angry at me. I try to remind myself frequently that he is not himself any more and not to take it personally. I know you will find good advice and comfort here, as I have. Elena
Nikki, thank you for asking, I am relieved today, cause the air has been so tense around here I was about to loose it. I have many other stresses in my life, I am taking care of my father who is 85, my son has had a brain tumor and is not very stable mentally, (has tried suicide a couple times), my daughter just found out my grandchildren were abused by their grandfather, on her husbands side. Horrible situation I can't even go into, and now her husband appears to have a bleeding ulcer, and it goes on and on. We moved to a very remote place when my husband was diagnosed because we couldn't afford to make the payments on our house we owned, which now is worth less than we owe, so my daughter is living in it for now and making the payments. I had to move away from the grandchildren I cared for and come up here to a place that we can live free. But it is a far cry from where I lived, very small mobile, way out in the country, and about 1 1/2 hours from my kids/grandkids. DH can't handle the kids, so we don't see them too often, and all in all it is just hard, as everyone here well knows. NOW I feel better, I unloaded all that garbage. :) Eleana, its funny, after reading your relpy this morning, I can see my DH feels the same. He is angry at the circumstances, he had two years till retirement from the Laborers Union, and had to stop working. We lost quite a bit of our retirement money because of it. He brings that up all the time, because he was always a good provider. Think those things really bother him. I need to remind myself of that too, and not take it personally. That is a big problem with me, because I have always mentally blamed myself for everything...thanks for the reminder.
Linda, have you read Joan's blog on her home page about Richard Taylor? JOAN’S BLOG – THURS/FRI, JULY 23/24, 2009 – RICHARD TAYLOR EXPLAINS THE AD ANGER
Mr Taylor (an AD patient) talks about his own anger and explains how it is fueled by fear (fear of the future, fear of losing control, etc). It always helps me to think not "it's the disease speaking" but "It's my dh's terrible, deep-rooted fear that he can't admit even to himself, lashing out in the only way it knows how."
Welcome Linda, it is a strange community that we live in. It is truly our own world that only those of us who live within it understand. My husband has FTD, begain with some problems somewhere around 1998/99. He was misdiagnosed with just Depression and Anxiety for a few years before having a Contrast PET Scan which showed the areas that were/are deteriorating. Has your DH had one? This is one of the only ways, short of an autopsy of seeing where the disease is, thus giving a decent dx. The reason this is so important is that the behaviors for EOAD and FTD are similiar at first then AD meds can make FTD worse. My DH is on Paxil and Welbutrin and Seroquel is our best friend, have you tried it? He also takes Ativan for his anxiety. He cannot stand commotion, he very easily and frequently gets sensory overload. We all are here and understand what a mess life can be. I am raising two little grandsons, ages 6 & 9 and have my Mom who has Pulmonary Fibrosis, in remission, living with me. When she is healthy she is a Godsend. Hang in their friend. We are here....................................
What on earth is a contrast PET Scan? I went to the UCSF, Alzheimers center, and they did so many tests, but I don't remember that one. I haven't read about FTD yet, need to find out what that is. But again, thanks to all, what a difference this has made.
((Mimi)) I am relieved you have found a place to help you unload some of the tremendous burdens you are trying to carry. It is amazing what being surrounded by people who truly understand can do for ones spirit isn't it? So glad you found us ((hugs))
mimiS Welcome to our world. We are happy to have a new voice but sorry for your circumstances. You will find that everyone here is at different stages of the disease and they will all have wonderful imput. The best part of this website is that no matter when you are in need, you can post and most of the time someone will be online to respond. It is a website worth its weight in gold. We are all so grateful to Joang for having the ability to start the site and being very generous with her time.
A contrast pet scan is a scan of whatever part of the body that is necessary to be reviewed (in this case, the brain) and the person either drinks a fluid or has an iv or both that helps the radiologist see the brain in better detail. It is a fabulous test. I'm not a medical person but have had enough experience with pet scans recently to explain it reasonably well. If I am wrong, someone will correct me. Thanks
Okay, well I looked up his test info that we had done, and he did have a CT scan, but not the PET scan. We are supposed to go next month for a re-evaluation, and I am going to ask about that then. I am learning more and more about this site, how to navigate etc...wasn't sure where to add comments etc...and Nikki, you are so right, this made a temendous difference, just having people to talk to that are going through the same thing and understand. It helped me to look at the situation differently, and react better to my poor DH when he is out of line. I'm sure I will still fail miserably, but I'll be here to get help. Thank you all! Hugs to you all!!!